Jamie was born by planned caesarean.
It was an odd decision to try to make. My condition isn't such that the medical professionals involved were insisting that a c-section was the only way to go, but the option was on the table from the outset. The decision, however, was entirely down to me, which helped me feel a lot more in control of things.
Surgery is never something to take lightly. As operations go, c-sections are pretty safe, but they ultimately involve a slice through your abdomen big enough to haul out an entire wriggling baby - there's a lot of risks to be considered and it typically takes longer to recover from than a complication-free "natural" childbirth. But we felt that, for me and my body and what I know of my condition for the last decade, an attempt at "natural" labour would be likely to end up in an unplanned c-section anyway, that would happen while I was exhausted to the point of incoherence - and then I would have to recover from surgery AND labour simultaneously, instead of one or the other. Therefore the best way of ensuring things went smoothly, that I recovered as soon as possible, that I understood what was happening and was mentally present for the birth of my child, was a planned c-section.
A secondary factor was that if I attempted "natural" birth and failed, that failure would be very upsetting. I would feel that I'd let the baby down. If I'd been so exhausted that I couldn't understand what was happening when I went into theatre, then my consent would have been a fuzzy issue, and I would feel like my hoped-for "birth experience" had been taken from me. It seemed more emotionally sensible to set my expectations at an achievable level.
I have to admit that even now, two months post-partum, I'm still not entirely reconciled to the c-section on the emotional side of things. There is so much information out there about the many and varied reasons why a "natural" birth is better for both mother and child, if there are no other factors to be taken into consideration, but pretty much all the information leaves out that caveat. Pregnancy magazines cheerlead expectant mothers along with soundbites like "having a baby is what your body was designed to do!" and (quite apart from the feminist and anti-creationism problems I have with that statement) this approach really excludes those of us whose bodies struggle with certain things. Every magazine I read gave me exactly the same feeling of "this isn't for you; you're not our target audience and we'd rather not have to consider you" as a shop or service building that has steps out the front. Goodness knows what it does to women who need c-sections but aren't already used to finding themselves outside the dominant paradigm.
Anyway. A planned c-section it was. The planning extended to the date, but not the time of the surgery. The way our hospital runs it is: people scheduled for c-sections that day arrive at the labour ward at 8am, and then the day's theatre schedule is created in order of priority, to include the women who are already in labour and for some reason need or are likely to need an unplanned c-section. I think this is a really good way of organising it. Not only does it mean that the women most in need are prioritised, but also, it was nice having some unknown elements in what was quite a medicalised version of having a baby.
On the day, we turned up at 8am and I was given a theatre gown straight away and told there were only two of us in for surgery that day so we'd likely be meeting our baby quite soon. Unfortunately emergencies started to happen and after a while our midwife came back and told us to get my socks back on and bundle me up in our coats to keep warm during the delay.
A while after that we were moved to the post-natal ward to wait. It had been agreed ahead of time that the best way to deal with my mobility needs after the birth was to place me in one of the side rooms, which had solid walls rather than curtains and a bit more space either side of the bed than the cubicles on the ward. I think perhaps part of the reason we were moved was to make sure that the room the ward manager had felt would be most suitable didn't end up being reassigned to one of the emergency cases. It was a lovely and unexpected bonus to get the chance to relax and acclimatise to the post-natal environment while still being pre-natal. I think the only downside was that being pre-surgery I had to keep declining the offers of breakfast, tea, elevenses, lunch, more tea... Mostly we were just being thankful that we weren't an emergency.
I did have to send Steve to go and eat something. He'd been too nervous to eat first thing in the morning. By mid-morning he was hungry, but didn't dare go to the cafeteria in case we were called for theatre while he was gone. Eventually around lunchtime I convinced him that I'd rather have him be two minutes late into theatre, than risk him passing out while I was lying there immobilised on the operating table.
And then suddenly, mid-afternoon, our midwife appeared in the room wearing scrubs and asked if we were ready? We took the coats and jumpers off me, I got into my wheelchair, and we followed her to the corridor where the operating theatre was. At that point, Steve was directed to go put some scrubs on, and I went into the theatre. There were windows and natural light as well as the electric lighting, which I hadn't expected but quite liked. I was in my chair right up to the operating table.
First I had to sit on the table to have the spinal anaesthetic. The anaesthetist(?), who I think was called Scott, stood behind me, while another person (doctor? nurse? other? I think his name was Trevor, everyone introduced themselves to me by first names rather than titles) supported me to try and bend forward enough that the needle could go in between the correct vertebrae. This didn't work so well - I think my back muscles had tensed from sitting in slightly awkward positions and also from being suddenly cold, plus of course I had a massive baby bump to try and bend around. Another person joined in, and the combination of being manhandled, but so very carefully, and at such an emotional moment, meant it was a weird halfway point between wrestling and a group hug. Eventually the spinal was in, though, and I lay down on the table and realised that I had, after all, forgotten to take my socks off.
At that point Steve was allowed in, although his first job was to return my wheelchair (and, I presume, my socks) to the post-natal ward. It can't have taken him more than two minutes but it felt like a very long two minutes. Meanwhile, probably-Scott was adjusting my drip based on what I was telling him. I did feel a bit silly and complain-y saying things like "I feel cold," and "I don't think I'll throw up but I feel a bit nauseous," but since his response was invariably "okay, we'll take care of that," followed by whatever it was being resolved, I guess it's what I was supposed to tell him. Finally a can of spray was squirted first at my arm (where I felt it as freezing cold) and then all over the rest of my body (where I didn't feel it at all), and we were ready to go.
Steve came back in and was told to sit at my right shoulder, and probably-Scott was at my left shoulder. There was a sheet suspended over my chest, and everyone else was on the other side of the sheet. The people in the room did do a quick run-through of names and roles but my mind was otherwise occupied.
I did not feel the incision, but I could feel the baby still moving inside me, and I could feel that my lower body was being moved about, although I have no idea what position I ended up in. It's not exactly a delicate operation and there was a whole lot of pushing and tugging - sometimes enough that my upper body on "our" side of the sheet was visibly moving. There wasn't any pain at all, but having the rummaging-about sensations meant I didn't feel detached from what was happening. Steve kept talking to me, and I kept breathing and trying to relax, and then there was the sound of a baby crying, which seemed so... scripted? clichéd? but of course it's what happened, and then someone said "oh, he's gorgeous!" followed by "erm, did they know if it was a boy or a girl?" which Steve and I couldn't help laughing about.
Steve took pictures with my phone of Jamie being wiped off, weighed, en-nappied and wrapped in warm towels. Then as per our birth plan, he took the first cuddle while the various wires and monitors around my chest were moved to allow Jamie to be placed on my chest for skin-to-skin contact. Probably-Trevor came round the sheet and joined probably-Scott for this bit but I really wasn't paying attention to anything at that point except Jamie, who didn't yet have a name. He was just Baby, all tiny and warm and fragile. He looked so very much like a complete and individual person that I could hardly believe that just a few minutes previously he'd been inside me, effectively one of my internal organs, growing out of the things I ate. I was aware, on some level, that the operation was still continuing, but I couldn't feel a thing any more. We kept cuddling all the while that I was being sewn back up, and he even stayed on me while the two of us were transferred from the operating table to a hospital bed and wheeled through to the recovery room, where the midwife helped us with our first attempt at breastfeeding.
It was a lovely birth experience. I don't have a Natural Childbirth Top Trumps card (hours in labour, number of stitches, etc) but in many ways that's a relief. I just have the care and friendliness of the NHS helping us transition to being a family of three with a minimum amount of drama.
Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts
Sunday, December 13, 2015
Sunday, May 31, 2015
Wee!
Someone once told me that their overriding experience of pregnancy was going hither and yon with a handbag full of wee, ready to give to whoever asked for it next.
At the moment I'd say there are quite a few things registering rather more strongly on my radar, but I couldn't go so far as to say she was wrong.
Certainly the approach to wee seems to be quite different when it comes to obstetrics, compared to any other department I've dealt with. In obstetrics, it's all about the wee. Seriously. You must turn up to every appointment with a urine sample, or a full bladder, or both. I have an appointment coming up to discuss birth options with my consultant, but I had to contact the hospital to find out what the appointment was for and who it was with, because the only details anyone saw fit to include in the appointment letter were the time/date/location and the necessity of bringing wee. I'm not even sure why wee would be relevant to that appointment. Maybe it's just a standard line on their appointment letter template.
The response to a sample is different too. In other departments, you slightly shyly proffer your sample and say something like "do I give this to you?" and the doctor or nurse either says "yes, I can take that," or "no, hang on to that and give it to (person)." In obstetrics, almost without fail, the response is a gleeful "ooh, yes please! We love wee!" and do you know what's really upsetting? That's not even bothering me any more.
At the moment I'd say there are quite a few things registering rather more strongly on my radar, but I couldn't go so far as to say she was wrong.
Certainly the approach to wee seems to be quite different when it comes to obstetrics, compared to any other department I've dealt with. In obstetrics, it's all about the wee. Seriously. You must turn up to every appointment with a urine sample, or a full bladder, or both. I have an appointment coming up to discuss birth options with my consultant, but I had to contact the hospital to find out what the appointment was for and who it was with, because the only details anyone saw fit to include in the appointment letter were the time/date/location and the necessity of bringing wee. I'm not even sure why wee would be relevant to that appointment. Maybe it's just a standard line on their appointment letter template.
The response to a sample is different too. In other departments, you slightly shyly proffer your sample and say something like "do I give this to you?" and the doctor or nurse either says "yes, I can take that," or "no, hang on to that and give it to (person)." In obstetrics, almost without fail, the response is a gleeful "ooh, yes please! We love wee!" and do you know what's really upsetting? That's not even bothering me any more.
Friday, May 08, 2015
Testing
The other day I blogged about my private scan, and the joy of it, but also my misgivings about the way private healthcare uses fearmongering to boost profits - in this instance, by telling pregnant women that "time was running out" for them to get tests not routinely offered by the NHS.
These misgivings are reinforced when I'm on forums with parents-to-be from other countries who are dependent on less-than-stellar private healthcare packages and are having to approach all tests from a position of "can we afford it?"
So I feel wonderfully lucky to have the NHS, offering testing and screening and scanning and measuring for all sorts of things. Obviously (I hope obviously) I'm entirely against the idea of aborting a foetus for having a disability. On the other hand, I think it's a damn good idea to know if there's a treatable medical issue endangering the life of the mother or the baby. On the other other hand, screening tests are imperfect (screening determines only likely/unlikely, secondary testing is required to obtain a yes/no) and being told your pregnancy is "high risk" for something can cause a great deal of often-unnecessary worry. On the other other other hand, I can really see the logic of being able to research and prepare ahead of time for a baby which will have complex needs from birth...
It's an incredibly tangled and emotive issue, and one that it's very difficult to discuss without encountering distressing invective about disability, abortion, women's rights to make decision about their own bodies, shaming, blaming, name-calling and all sorts of other unsavouriness.
Weirdly, for me the decision has been made vastly simpler by being disabled. I know ahead of time that when I get past, say, week 38 of 40, I'm going to become difficult. At the absolute very minimum, once the baby is born and I'm on the ward, I'm going to need my wheelchair and/or walking frame beside the bed - and every disabled person reading knows that hospitals don't like you bringing your own (I think it's a philosophical problem as much as a space and hygiene issue). When I use that wheelchair or walking frame to get to the loo, I'm going to need the staff on the ward to understand that it's not appropriate to tell me that having had a baby doesn't make me disabled and to just walk properly. I may have to determine whether my PA counts as a visitor because while I'm wiped out I'll need advocacy. There's all sorts of stuff, none of it insurmountable, but all of it needing to be addressed.
So, up until the point at which I really really need to raise my head above the parapet and start being (what I fear will be construed as) fussy and awkward, I feel I should be as compliant as possible with the non-invasive testing. Build up my credit, sort of thing. For every single test, the accompanying leaflet reminds you that you have the right to refuse, but I feel that it will serve me better not to have "refused testing!!!" or worse, "has internet access" written on my notes, you know?
These misgivings are reinforced when I'm on forums with parents-to-be from other countries who are dependent on less-than-stellar private healthcare packages and are having to approach all tests from a position of "can we afford it?"
So I feel wonderfully lucky to have the NHS, offering testing and screening and scanning and measuring for all sorts of things. Obviously (I hope obviously) I'm entirely against the idea of aborting a foetus for having a disability. On the other hand, I think it's a damn good idea to know if there's a treatable medical issue endangering the life of the mother or the baby. On the other other hand, screening tests are imperfect (screening determines only likely/unlikely, secondary testing is required to obtain a yes/no) and being told your pregnancy is "high risk" for something can cause a great deal of often-unnecessary worry. On the other other other hand, I can really see the logic of being able to research and prepare ahead of time for a baby which will have complex needs from birth...
It's an incredibly tangled and emotive issue, and one that it's very difficult to discuss without encountering distressing invective about disability, abortion, women's rights to make decision about their own bodies, shaming, blaming, name-calling and all sorts of other unsavouriness.
Weirdly, for me the decision has been made vastly simpler by being disabled. I know ahead of time that when I get past, say, week 38 of 40, I'm going to become difficult. At the absolute very minimum, once the baby is born and I'm on the ward, I'm going to need my wheelchair and/or walking frame beside the bed - and every disabled person reading knows that hospitals don't like you bringing your own (I think it's a philosophical problem as much as a space and hygiene issue). When I use that wheelchair or walking frame to get to the loo, I'm going to need the staff on the ward to understand that it's not appropriate to tell me that having had a baby doesn't make me disabled and to just walk properly. I may have to determine whether my PA counts as a visitor because while I'm wiped out I'll need advocacy. There's all sorts of stuff, none of it insurmountable, but all of it needing to be addressed.
So, up until the point at which I really really need to raise my head above the parapet and start being (what I fear will be construed as) fussy and awkward, I feel I should be as compliant as possible with the non-invasive testing. Build up my credit, sort of thing. For every single test, the accompanying leaflet reminds you that you have the right to refuse, but I feel that it will serve me better not to have "refused testing!!!" or worse, "has internet access" written on my notes, you know?
Saturday, March 12, 2011
Brave vs Stupid
IF you have a painful injury or condition which manifests itself by way of inflammation...
... and IF you see a doctor and the doctor refers you to physiotherapy and advises you to take ibuprofen (a well-used anti-inflammatory medication) while waiting for the physiotherapy appointment.
Take the freaking ibuprofen already.
It is not brave to struggle along without medication.
You will not get a Brave Little Soldier prize for enduring unnecessary pain.
Pain =/= moral superiority.
If you are worried that taking ibuprofen will "mask the pain" and that this will mean you do more than you should and cause yourself more damage... stop when you think it's sensible, rather than waiting until you are experiencing "oh gosh I'm damaging myself further" levels of pain.
It's a bit like how in order to wake up and function at 7am, you go to bed at 11pm, even though you could stay up longer. You don't insist on waiting until you physically cannot keep your eyes open any more or on going without sleep altogether because you think sleep will "mask" your tiredness.
Yes, pain is the body's alarm system to tell you something's not right.
You've acted on that warning by seeing the doctor and getting the physio referral. Enduring further pain is like leaving a burglar alarm blaring even after the thieves have left the scene and the police are on their way - upsetting and pointless.
It is not clever to refuse to even try your doctor's suggestion.
If you really feel you must not and will not take the medication the doctor tells you to, it is ridiculous to neglect to tell your doctor that you are ignoring his/her advice.
Yes, the over-the-counter box says that if symptoms persist you should consult your doctor for proper medical advice.
You already consulted your doctor and were advised to take ibuprofen - that IS proper medical advice.
Yes, long-term use of NSAIDs including ibuprofen can lead to stomach problems.
No, a few weeks until your physiotherapy appointment does not count as "long term".
And finally, if you must be this much of an idiot, don't expect me to be impressed when you tell me!
I'm pretty certain that the person this refers to doesn't read this blog. But I really needed to get it off my chest, and it wasn't possible at the time.
... and IF you see a doctor and the doctor refers you to physiotherapy and advises you to take ibuprofen (a well-used anti-inflammatory medication) while waiting for the physiotherapy appointment.
Take the freaking ibuprofen already.
It is not brave to struggle along without medication.
You will not get a Brave Little Soldier prize for enduring unnecessary pain.
Pain =/= moral superiority.
If you are worried that taking ibuprofen will "mask the pain" and that this will mean you do more than you should and cause yourself more damage... stop when you think it's sensible, rather than waiting until you are experiencing "oh gosh I'm damaging myself further" levels of pain.
It's a bit like how in order to wake up and function at 7am, you go to bed at 11pm, even though you could stay up longer. You don't insist on waiting until you physically cannot keep your eyes open any more or on going without sleep altogether because you think sleep will "mask" your tiredness.
Yes, pain is the body's alarm system to tell you something's not right.
You've acted on that warning by seeing the doctor and getting the physio referral. Enduring further pain is like leaving a burglar alarm blaring even after the thieves have left the scene and the police are on their way - upsetting and pointless.
It is not clever to refuse to even try your doctor's suggestion.
If you really feel you must not and will not take the medication the doctor tells you to, it is ridiculous to neglect to tell your doctor that you are ignoring his/her advice.
Yes, the over-the-counter box says that if symptoms persist you should consult your doctor for proper medical advice.
You already consulted your doctor and were advised to take ibuprofen - that IS proper medical advice.
Yes, long-term use of NSAIDs including ibuprofen can lead to stomach problems.
No, a few weeks until your physiotherapy appointment does not count as "long term".
And finally, if you must be this much of an idiot, don't expect me to be impressed when you tell me!
I'm pretty certain that the person this refers to doesn't read this blog. But I really needed to get it off my chest, and it wasn't possible at the time.
Monday, November 29, 2010
Doctors
I had to go and see my GP today. Nothing's wrong - it's just that every so often there will be a note on my repeat prescription asking me to make an appointment for a "medication review" and then I have to attend.
Since I got all the diagnostic tests and the medication-juggling and so on dealt with while I was still living in Lowestoft, by the GP who'd known me since childhood, the doctor who has been "my" GP for the three years I've been living here doesn't actually know me - so it made no difference that she's ill today and I ended up seeing a different doctor. Today's appointment was much the same as every other and pretty much went as follows:
Good morning, how are you?
Fine thanks, yourself?
Yes, fine, thank you. Please take a seat. So, what can we do for you today?
Well, I had a note on my repeat prescription telling me it was time for a review.
Ah, okay. *taps at computer* You're on X, Y, and Z, yes?
That's right.
Any problems with any of those?
Nope.
How are you generally?
Same as usual, nothing new to report.
Nothing you need to raise?
Nope.
*taps at computer some more* okay, that's done. Do you need me to do you another prescription today?
I don't mind, I've got a couple of weeks' worth at home still.
In that case shall we leave it and you can just pick up your repeat as usual when you need it?
Sounds good to me. Are we all done?
Yes, unless there was anything else?
Nope, all good. Thank you for your time.
The trouble is that, as a patient with an ME/CFS diagnosis, there are no other answers I'd dare give. I'm too scared of being labelled a malingerer. So I get defensive and clam up.
A plethora of medical blogs teaches me that patients like myself, with chronic illnesses that don't seem to get much better or much worse, are despised. "Heartsink patients" is apparently what we are called - we walk in the room and the doctor's heart sinks because he knows that all he can do is dole out the drugs, which is not the role he slogged through medical school to attain.
The heartsink patient presents vague symptoms that the doctor can do nothing about. They bother the doctor with pointless questions and ideas and they seem to have no idea about what sort of thing actually warrants bothering a GP and taking up his valuable time. The caricature is of a patient holding a sheaf of newspaper clippings and internet printouts about quack therapies, because it is wrong to be concerned about your health if you don't have a critical scientific background. You should leave that to the expert who sees you for eight minutes a year.
And then there's the whole ME/CFS physical/psychological debate. What is the difference between a headache that exists and a headache that the sufferer only thinks exists? Personally I'm not sure there is a difference. Both patients are experiencing pain. Speaking for myself, I underwent psychological assessment in the earliest phases of my illness and was considered to have all screws firmly affixed. But that's buried many years back in my notes. Many doctors still consider ME/CFS to be a manifestation of depression, or attention-seeking, or even painkiller-addiction, and nothing says 'mental health problems' like the statement "the shrink said I was sane!" so I keep my mouth shut and hope beyond hope that the doctor will take me at face value.
So thanks to the medical bloggers letting me know how they view me, I feel resented as a patient, and obliged to take up as little of the doctor's time as possible. I do not dare mention to any medical professional the links and patterns that I've noticed since my condition and medication settled, lest I be categorised as 'obsessed' with my health. I have a normal human desire for people to not think badly of me and that includes doctors.
Paradoxically, there are things I probably should be mentioning. I mean, earlier today when the doctor asked me - actually asked me - if there were any difficulties with my medications, that was probably the right time to mention that for the last eighteen months or so I've been feeling really quite queasy about thirty minutes after taking ibuprofen in the afternoon or evening (but weirdly not in the morning). But I don't know! If I say that, is it going to be a case of "right, we'd better try you on something different for a while," or is it going to be more "FFS, stop wasting my time and clogging up my surgery with your hypochondria!"
To be absolutely clear, this has nothing to do with any of the GPs I've ever seen at my local surgery. They have never been anything less than courteous, professional and efficient. It's the ones who dropped the professional veneer, albeit with anonymity, to come online and let the patients know just how contemptible we are.
So, GP bloggers, off we go. Complain about those bloody heartsink patients who don't know how to behave. Because frankly, I have no idea how to behave and if you could give me some constructive pointers I'd be grateful.
Since I got all the diagnostic tests and the medication-juggling and so on dealt with while I was still living in Lowestoft, by the GP who'd known me since childhood, the doctor who has been "my" GP for the three years I've been living here doesn't actually know me - so it made no difference that she's ill today and I ended up seeing a different doctor. Today's appointment was much the same as every other and pretty much went as follows:
Good morning, how are you?
Fine thanks, yourself?
Yes, fine, thank you. Please take a seat. So, what can we do for you today?
Well, I had a note on my repeat prescription telling me it was time for a review.
Ah, okay. *taps at computer* You're on X, Y, and Z, yes?
That's right.
Any problems with any of those?
Nope.
How are you generally?
Same as usual, nothing new to report.
Nothing you need to raise?
Nope.
*taps at computer some more* okay, that's done. Do you need me to do you another prescription today?
I don't mind, I've got a couple of weeks' worth at home still.
In that case shall we leave it and you can just pick up your repeat as usual when you need it?
Sounds good to me. Are we all done?
Yes, unless there was anything else?
Nope, all good. Thank you for your time.
The trouble is that, as a patient with an ME/CFS diagnosis, there are no other answers I'd dare give. I'm too scared of being labelled a malingerer. So I get defensive and clam up.
A plethora of medical blogs teaches me that patients like myself, with chronic illnesses that don't seem to get much better or much worse, are despised. "Heartsink patients" is apparently what we are called - we walk in the room and the doctor's heart sinks because he knows that all he can do is dole out the drugs, which is not the role he slogged through medical school to attain.
The heartsink patient presents vague symptoms that the doctor can do nothing about. They bother the doctor with pointless questions and ideas and they seem to have no idea about what sort of thing actually warrants bothering a GP and taking up his valuable time. The caricature is of a patient holding a sheaf of newspaper clippings and internet printouts about quack therapies, because it is wrong to be concerned about your health if you don't have a critical scientific background. You should leave that to the expert who sees you for eight minutes a year.
And then there's the whole ME/CFS physical/psychological debate. What is the difference between a headache that exists and a headache that the sufferer only thinks exists? Personally I'm not sure there is a difference. Both patients are experiencing pain. Speaking for myself, I underwent psychological assessment in the earliest phases of my illness and was considered to have all screws firmly affixed. But that's buried many years back in my notes. Many doctors still consider ME/CFS to be a manifestation of depression, or attention-seeking, or even painkiller-addiction, and nothing says 'mental health problems' like the statement "the shrink said I was sane!" so I keep my mouth shut and hope beyond hope that the doctor will take me at face value.
So thanks to the medical bloggers letting me know how they view me, I feel resented as a patient, and obliged to take up as little of the doctor's time as possible. I do not dare mention to any medical professional the links and patterns that I've noticed since my condition and medication settled, lest I be categorised as 'obsessed' with my health. I have a normal human desire for people to not think badly of me and that includes doctors.
Paradoxically, there are things I probably should be mentioning. I mean, earlier today when the doctor asked me - actually asked me - if there were any difficulties with my medications, that was probably the right time to mention that for the last eighteen months or so I've been feeling really quite queasy about thirty minutes after taking ibuprofen in the afternoon or evening (but weirdly not in the morning). But I don't know! If I say that, is it going to be a case of "right, we'd better try you on something different for a while," or is it going to be more "FFS, stop wasting my time and clogging up my surgery with your hypochondria!"
To be absolutely clear, this has nothing to do with any of the GPs I've ever seen at my local surgery. They have never been anything less than courteous, professional and efficient. It's the ones who dropped the professional veneer, albeit with anonymity, to come online and let the patients know just how contemptible we are.
So, GP bloggers, off we go. Complain about those bloody heartsink patients who don't know how to behave. Because frankly, I have no idea how to behave and if you could give me some constructive pointers I'd be grateful.
Tuesday, January 19, 2010
DLA exam
This morning I had my medical examination for my DLA renewal.
A big thank you to everyone who left such supportive and encouraging comments on my last post - it really helped me to stay calm about the whole thing.
The doctor arrived on time and stayed for just under an hour, which is good as the examination is supposed to take between 20 and 60 minutes. He came across as a pleasant and professional man. He was patient when I was struggling with things and gave the impression of listening to what I was saying. He took an awful lot of notes and appeared to be trying to understand, although of course he also made several efforts to catch me out. He did seem a little perplexed about why he was being asked to examine me for a renewal rather than a new claim.
I don't know if he believed a word I said and I have no idea what he wrote down. But on the whole I am happy with how the examination went. My PA was also present and she felt it had gone well - that I had presented openly and honestly and that I had made my difficulties clear without exaggerating.
And now I can stop worrying until the next letter turns up.
A big thank you to everyone who left such supportive and encouraging comments on my last post - it really helped me to stay calm about the whole thing.
The doctor arrived on time and stayed for just under an hour, which is good as the examination is supposed to take between 20 and 60 minutes. He came across as a pleasant and professional man. He was patient when I was struggling with things and gave the impression of listening to what I was saying. He took an awful lot of notes and appeared to be trying to understand, although of course he also made several efforts to catch me out. He did seem a little perplexed about why he was being asked to examine me for a renewal rather than a new claim.
I don't know if he believed a word I said and I have no idea what he wrote down. But on the whole I am happy with how the examination went. My PA was also present and she felt it had gone well - that I had presented openly and honestly and that I had made my difficulties clear without exaggerating.
And now I can stop worrying until the next letter turns up.
Tuesday, January 12, 2010
Medical Examination
So, Disability Living Allowance, also known as DLA and a great source of both help and stress. To recap, this is the money given to disabled people regardless of income or work status, to help meet some of the unavoidable extra costs associated with disability, from wheelchairs to incontinence pads to home delivery fees to Meals On Wheels. It's split into Care and Mobility components, awarded at different levels depending on the extent of difficulty you have with each of these aspects.
Now, a quick timeline. I applied for DLA again in February 2008. I was turned down and asked for an appeal. This took until October 2008 to arrange. I won and a backdated award was made, for two years starting from February 2008 when I had first applied. So the award expires in February 2010.
As such, I got a renewal pack in October 2009 - they give you plenty of time so that you have a chance to access support from the Citizen's Advice Bureau or similar organisations. In November I sent off the completed renewal pack, including:
In addition they will have written to my GP for her opinion, and she will have written back in support of my application, just like she did last time.
But they say that they "do not have enough information."
They want me to be examined by a doctor from ATOS healthcare next week.
I'm not entirely sure what that doctor is supposed to discover in his 20-60 minute session that has not already been provided in my own testimony and corroborated by several different types of person associated with my care. Especially considering that there are no easy or visible diagnostic criteria for ME/CFS. It's not like counting the limbs of someone who claimed on their form to have had two legs amputated and going "yep, looks like you are right after all". Variable and invisible conditions are a little more complicated.
He will be coming to my house, so I have a glimmer of hope that he just wants to check that I do have the assistive devices I claimed to use and that they're not covered in dust, that my to-do list doesn't include renewing my subscription to Hill Walker Weekly, and that I say "ow" often enough.
But even though I tell myself this... even though I know I successfully appealed once and can do it again if I have to... even though I know I have not lied on my forms... even though I know the doctor will get paid regardless of what he says about me... I've known a few too many people with a few too many horror stories about medical examinations for benefits purposes, up to and including doctors getting a claimant's condition wrong, writing down things they had not asked about and could not possibly have observed, bullying claimants into signing blank forms, and in one memorable instance, ticking the wrong gender box.
I think it's like when people are pregnant, and everyone comes forward with the stories of six weeks of labour, of a hundred stitches inside and out, of the midwife being busy and the cleaner having to do an emergency C-section using only a biro... and even though you know it probably won't happen to you, it preys on your mind. What I could do with right now, if anyone has the time, is a few comments saying "I had an ATOS medical examination, it wasn't a problem, the doctor was on time, he was nice, he listened to what I said before writing it down, let me take my time, and a few weeks later I was given an indefinite award at what I feel was the correct level."
Please?
Now, a quick timeline. I applied for DLA again in February 2008. I was turned down and asked for an appeal. This took until October 2008 to arrange. I won and a backdated award was made, for two years starting from February 2008 when I had first applied. So the award expires in February 2010.
As such, I got a renewal pack in October 2009 - they give you plenty of time so that you have a chance to access support from the Citizen's Advice Bureau or similar organisations. In November I sent off the completed renewal pack, including:
- Their 40-page form, completed with the basic and general answers.
- A typed 26-page document giving the more detailed answers they ask you to provide to their questions, including information about good and bad days, equipment I use and how I use it, support I receive and so on, because these answers just don't fit into answer-spaces the size of a credit card on the form.
- A copy of my current medication and equipment prescriptions.
- A copy of my Social Services care plan and contact details for my social worker, occupational therapist, GP, Access to Work adviser and everyone else associated with my disability needs.
- A statement from Steve as someone who lives with me.
- A statement from my PA as a person who is paid to look after me.
- A medical report from the ME/CFS specialist who formally assessed and diagnosed me.
In addition they will have written to my GP for her opinion, and she will have written back in support of my application, just like she did last time.
But they say that they "do not have enough information."
They want me to be examined by a doctor from ATOS healthcare next week.
I'm not entirely sure what that doctor is supposed to discover in his 20-60 minute session that has not already been provided in my own testimony and corroborated by several different types of person associated with my care. Especially considering that there are no easy or visible diagnostic criteria for ME/CFS. It's not like counting the limbs of someone who claimed on their form to have had two legs amputated and going "yep, looks like you are right after all". Variable and invisible conditions are a little more complicated.
He will be coming to my house, so I have a glimmer of hope that he just wants to check that I do have the assistive devices I claimed to use and that they're not covered in dust, that my to-do list doesn't include renewing my subscription to Hill Walker Weekly, and that I say "ow" often enough.
But even though I tell myself this... even though I know I successfully appealed once and can do it again if I have to... even though I know I have not lied on my forms... even though I know the doctor will get paid regardless of what he says about me... I've known a few too many people with a few too many horror stories about medical examinations for benefits purposes, up to and including doctors getting a claimant's condition wrong, writing down things they had not asked about and could not possibly have observed, bullying claimants into signing blank forms, and in one memorable instance, ticking the wrong gender box.
I think it's like when people are pregnant, and everyone comes forward with the stories of six weeks of labour, of a hundred stitches inside and out, of the midwife being busy and the cleaner having to do an emergency C-section using only a biro... and even though you know it probably won't happen to you, it preys on your mind. What I could do with right now, if anyone has the time, is a few comments saying "I had an ATOS medical examination, it wasn't a problem, the doctor was on time, he was nice, he listened to what I said before writing it down, let me take my time, and a few weeks later I was given an indefinite award at what I feel was the correct level."
Please?
Sunday, July 19, 2009
This call is being charged at £2 per minute
Today I woke up and looked through my BBC News twitterfeed to see the headline:
"Patients should be charged £20 to see a GP in a bid to limit demands placed on the health service, a centre-rig.. http://tinyurl.com/nwwohp"
Twitter and the 140 character limit. A slightly panicked click-through to the actual story reassures us that there isn't (currently) an intended government policy to charge people £20 for a ten-minute GP's appointment, it's just an idea that a "think tank" called the Social Market Foundation has come up with.
It's pre-9am on a Sunday, I'm still on my first cup of tea, and even so I can think of several things that are wrong with their proposals. Lord knows what this think-tank think they've been doing, but I don't think it was thinking.
First problem: "The group said it would not breach the values of the NHS as charges already applied to dentistry and prescriptions."
Yes, and I can introduce you to people who don't go to the dentist, don't have the necessary dental work done, don't fill their prescriptions, or try things like taking "daily" medications every-other-day, in the name of economy. Generally they end up bouncing on the safety net of emergency care, at an even greater cost to the NHS, once the problem that should have been dealt with in its early stages has been allowed to progress to a much more extreme (and harder/more expensive to deal with) level.
To my mind, charging for essential medical care like this is a breach of the values of the NHS. And just because there's one breach, doesn't mean it's permissible to add a few more.
Second problem: "[David Furness, the author of the report] said "It would get people thinking twice about whether the visit was essential."
Isn't it rather rare to just have one GP's appointment? Most people I know seem to have at least two. There's the first one, where they get told "Have some paracetamol/a bit of a rest/drink more water/make sure you keep it clean/etc, and come back next week if it hasn't cleared up/if it gets worse/if you develop a rash/etc." This is the one where before calling, you say to yourself "is this really bad enough that I need to see a doctor?" and probably the one Mr Furness is thinking about.
But then there's the second one a week later which goes "ah, you're still oozing/wheezing/vomiting, looks like you might be ill after all, let's get you some tests/medications." In an ideal world you'll get prescribed a short course of treatment which resolves the issue and trundle off into the sunset, £40 lighter but perfectly healthy.
Nice idea. However, if you don't get better, there's the third, fourth and fifth appointments, which go "we've got the results of your tests back, and now we need to give you medication/refer you for hospital treatment/send you for more tests/monitor you for a fortnight." Before making these appointments, Mr Furness wants you to think twice about whether it's really essential to carry on trying to establish what's wrong and how to treat it. See previous point about bouncing on the safety net of emergency care and allowing simple, treatable conditions to progress into complex ones.
Third problem: The 250-odd page report crashes my browser after ten minutes, but I did get a chance to double-check on exemptions. Mr Furness feels that instead of "arbitrary" exemptions such as pregnancy or retirement, exemptions from the fees should be based purely on "wealth". He defines "wealthy people" as everyone apart from "children and those receiving tax credits". I could not find any mention of provision for people on other forms of welfare or those on low incomes who are not entitled to or do not claim tax credits. I'm not sure how "children" is any less arbitrary than "pensioners" as a wealth-based category.
The time of my life when I had the most GP's appointments was at the beginning of my illness, when we were trying to figure out what was wrong with me. This makes sense and is not unusual.
This was also, obviously, the time when:
I was therefore not exempt, but also not in a position to hand over £20 per GP's appointment, at the time when I needed it most. My situation was not unusual at all. Also, I was ill. It's not the time to be dumping additional financial hardship onto people. This scheme may be designed to discourage the "worried well" from using up resources, but the people it will impact most are the people who are actually sick and in need of healthcare.
But Mr Furness's final, beautiful demonstration of idiocy had to be: "[he] said the think-tank was opposed to fees being levied on any form of emergency care."
The emergency care service has been creaking at the seams for years for various reasons, including the decreased "Out Of Hours" GP cover. Presented with a choice between phoning a free ambulance to come and visit you at home, or going out to attend a £20 GP appointment, what are most people going to do? I suspect that any savings Mr Furness's ideas might make GP-side would be dwarfed by the increased costs of emergency care.
Mind you, then he could get paid to write a report about how it would be a good idea to charge for that, as well.
"Patients should be charged £20 to see a GP in a bid to limit demands placed on the health service, a centre-rig.. http://tinyurl.com/nwwohp"
Twitter and the 140 character limit. A slightly panicked click-through to the actual story reassures us that there isn't (currently) an intended government policy to charge people £20 for a ten-minute GP's appointment, it's just an idea that a "think tank" called the Social Market Foundation has come up with.
It's pre-9am on a Sunday, I'm still on my first cup of tea, and even so I can think of several things that are wrong with their proposals. Lord knows what this think-tank think they've been doing, but I don't think it was thinking.
First problem: "The group said it would not breach the values of the NHS as charges already applied to dentistry and prescriptions."
Yes, and I can introduce you to people who don't go to the dentist, don't have the necessary dental work done, don't fill their prescriptions, or try things like taking "daily" medications every-other-day, in the name of economy. Generally they end up bouncing on the safety net of emergency care, at an even greater cost to the NHS, once the problem that should have been dealt with in its early stages has been allowed to progress to a much more extreme (and harder/more expensive to deal with) level.
To my mind, charging for essential medical care like this is a breach of the values of the NHS. And just because there's one breach, doesn't mean it's permissible to add a few more.
Second problem: "[David Furness, the author of the report] said "It would get people thinking twice about whether the visit was essential."
Isn't it rather rare to just have one GP's appointment? Most people I know seem to have at least two. There's the first one, where they get told "Have some paracetamol/a bit of a rest/drink more water/make sure you keep it clean/etc, and come back next week if it hasn't cleared up/if it gets worse/if you develop a rash/etc." This is the one where before calling, you say to yourself "is this really bad enough that I need to see a doctor?" and probably the one Mr Furness is thinking about.
But then there's the second one a week later which goes "ah, you're still oozing/wheezing/vomiting, looks like you might be ill after all, let's get you some tests/medications." In an ideal world you'll get prescribed a short course of treatment which resolves the issue and trundle off into the sunset, £40 lighter but perfectly healthy.
Nice idea. However, if you don't get better, there's the third, fourth and fifth appointments, which go "we've got the results of your tests back, and now we need to give you medication/refer you for hospital treatment/send you for more tests/monitor you for a fortnight." Before making these appointments, Mr Furness wants you to think twice about whether it's really essential to carry on trying to establish what's wrong and how to treat it. See previous point about bouncing on the safety net of emergency care and allowing simple, treatable conditions to progress into complex ones.
Third problem: The 250-odd page report crashes my browser after ten minutes, but I did get a chance to double-check on exemptions. Mr Furness feels that instead of "arbitrary" exemptions such as pregnancy or retirement, exemptions from the fees should be based purely on "wealth". He defines "wealthy people" as everyone apart from "children and those receiving tax credits". I could not find any mention of provision for people on other forms of welfare or those on low incomes who are not entitled to or do not claim tax credits. I'm not sure how "children" is any less arbitrary than "pensioners" as a wealth-based category.
The time of my life when I had the most GP's appointments was at the beginning of my illness, when we were trying to figure out what was wrong with me. This makes sense and is not unusual.
This was also, obviously, the time when:
- My job contract had ended and as I was signed off sick, I was not eligible for an extension or able to apply for other jobs. I therefore had no earned income. This makes sense and is not unusual.
- As I was not working, I could not claim or receive tax credits. This makes sense and is not unusual.
- I had not yet been approved to receive any benefits or practical assistance. I therefore had no income at all. This is also not unusual.
I was therefore not exempt, but also not in a position to hand over £20 per GP's appointment, at the time when I needed it most. My situation was not unusual at all. Also, I was ill. It's not the time to be dumping additional financial hardship onto people. This scheme may be designed to discourage the "worried well" from using up resources, but the people it will impact most are the people who are actually sick and in need of healthcare.
But Mr Furness's final, beautiful demonstration of idiocy had to be: "[he] said the think-tank was opposed to fees being levied on any form of emergency care."
The emergency care service has been creaking at the seams for years for various reasons, including the decreased "Out Of Hours" GP cover. Presented with a choice between phoning a free ambulance to come and visit you at home, or going out to attend a £20 GP appointment, what are most people going to do? I suspect that any savings Mr Furness's ideas might make GP-side would be dwarfed by the increased costs of emergency care.
Mind you, then he could get paid to write a report about how it would be a good idea to charge for that, as well.
Thursday, March 20, 2008
Things are picking up again
A couple of nights ago I realised that I have now been knitting for a whole year.
While this is something I'm actually quite happy about, it did put the cherry on the top when I did some measurements on the jumper I am working on last night and realised: I Have Made A Mistake.
To make matters worse, the Mistake was some five or six inches back. I can pinpoint the mistake - I made it on the 8th of March, because it was the day before Simon and Tony ran a half-marathon dressed as a camel. So that's almost two weeks' knitting. The Mistake I made was that I mis-measured the length from the cast-on to the armhole decrease. It's meant to be 14 inches. The back piece, already completed, has a perfect 14 inches. The front piece, for some reason, has a perfect 13 inches. I suspect that I looked at the tape measure with my brainfog on and misread the number or got the alignment wrong. It's not a huge difference but it's enough to show.
With a heavy heart and a lot of swearing, I started to frog. This was made complicated because with the Colinette Cadenza yarn I'm using, you're supposed to use two balls at once to avoid pooling. You do a knit and a purl row of Ball A, then a knit and a purl row of Ball B, then a knit and a purl row of Ball A again. Result: huge tangle of wiggly wool.
Steve was bright enough to realise that this was NOT the moment to go "hang on, I'll get my camera" but to offer support and assistance.
Once I'd ripped back far enough, I started to painstakingly pick up 120 stitches from the remaining knitting. I'd picked up about 115 of them before realising that because of the yarn-changeovers, the 5 at the end had unravelled themselves two rows back.
Further cursing as attempted to remember how to put in a safety line. I got some bright orange acrylic and started to stitch it in, four or five rows back. I got Steve to count my stitches while I did some stretching. Then it was back on the floor for more frogging, and a big sigh of relief when the line held.
While I began to thread the stitches on the orange line onto my circular needle, Steve wound his first centre-pull ball of yarn. It was great, except that as soon as I started to knit, we discovered respective cockups: I had threaded all 120 stitches onto my needle in the right order, but twisted the wrong way round, and Steve had wound the ball of yarn so tightly it wouldn't actually pull from the centre.
Still, by this point, we had a great sense of having got past the worst of it. I started to knit again, carefully turning each stitch around before knitting it, and Steve unwound his yarn and began to wind again, a little looser this time. He was so satisfied, that he checked his colour balancing before getting camera-happy at it, with the result that this picture is not only a nice picture of his second attempt, it's also pretty much exactly true colour.
I feel a bit funny about having wasted an evening - I should have been working on my form, he should have been studying - but there was something very nice about working together to get it sorted out. Plus, I now have a boyfriend who can wind centre-pulls, and that is a serious asset.
As far as the form goes, well, I just need to write about my night-time care needs, the precis of which is "I'm pretty much sorted if I'm safe and sound in bed, however, if I need to get out of bed, I need the same help as I would in the day, with additional consideration for me being even more badly co-ordinated because I'm sleepy because, you know, it's the middle of the damn night." I'm continuing with my approach of typing all the information into a document and then, on the form, just writing in which page of the document they should refer to. There are currently about 37 pages, covering about 30 major questions.
Oh, it's also worth saying, I saw the new GP, Dr H, about a week ago. I told her I was applying for DLA and about what happened last time. She told me there were in fact notes in my records about what happened last time, so I guess Dr W must have typed up a bit extra the last time I saw her before sending my notes here. Dr H confirmed a few bits and bobs from the screen ("yes, we've got stuff here about how you have trouble walking, can't walk without pain, about faints and dizzy spells, all that sort of thing") and then, the confirmation I really needed to hear:
"Yes, for the bit that asks about your GP, just put my name and the address of this surgery, they'll send us a form, and we will back you up. We will support your claim.".
Phew.
While this is something I'm actually quite happy about, it did put the cherry on the top when I did some measurements on the jumper I am working on last night and realised: I Have Made A Mistake.
To make matters worse, the Mistake was some five or six inches back. I can pinpoint the mistake - I made it on the 8th of March, because it was the day before Simon and Tony ran a half-marathon dressed as a camel. So that's almost two weeks' knitting. The Mistake I made was that I mis-measured the length from the cast-on to the armhole decrease. It's meant to be 14 inches. The back piece, already completed, has a perfect 14 inches. The front piece, for some reason, has a perfect 13 inches. I suspect that I looked at the tape measure with my brainfog on and misread the number or got the alignment wrong. It's not a huge difference but it's enough to show.
With a heavy heart and a lot of swearing, I started to frog. This was made complicated because with the Colinette Cadenza yarn I'm using, you're supposed to use two balls at once to avoid pooling. You do a knit and a purl row of Ball A, then a knit and a purl row of Ball B, then a knit and a purl row of Ball A again. Result: huge tangle of wiggly wool.
Steve was bright enough to realise that this was NOT the moment to go "hang on, I'll get my camera" but to offer support and assistance.
Once I'd ripped back far enough, I started to painstakingly pick up 120 stitches from the remaining knitting. I'd picked up about 115 of them before realising that because of the yarn-changeovers, the 5 at the end had unravelled themselves two rows back.
Further cursing as attempted to remember how to put in a safety line. I got some bright orange acrylic and started to stitch it in, four or five rows back. I got Steve to count my stitches while I did some stretching. Then it was back on the floor for more frogging, and a big sigh of relief when the line held.
While I began to thread the stitches on the orange line onto my circular needle, Steve wound his first centre-pull ball of yarn. It was great, except that as soon as I started to knit, we discovered respective cockups: I had threaded all 120 stitches onto my needle in the right order, but twisted the wrong way round, and Steve had wound the ball of yarn so tightly it wouldn't actually pull from the centre.
Still, by this point, we had a great sense of having got past the worst of it. I started to knit again, carefully turning each stitch around before knitting it, and Steve unwound his yarn and began to wind again, a little looser this time. He was so satisfied, that he checked his colour balancing before getting camera-happy at it, with the result that this picture is not only a nice picture of his second attempt, it's also pretty much exactly true colour.
I feel a bit funny about having wasted an evening - I should have been working on my form, he should have been studying - but there was something very nice about working together to get it sorted out. Plus, I now have a boyfriend who can wind centre-pulls, and that is a serious asset.
As far as the form goes, well, I just need to write about my night-time care needs, the precis of which is "I'm pretty much sorted if I'm safe and sound in bed, however, if I need to get out of bed, I need the same help as I would in the day, with additional consideration for me being even more badly co-ordinated because I'm sleepy because, you know, it's the middle of the damn night." I'm continuing with my approach of typing all the information into a document and then, on the form, just writing in which page of the document they should refer to. There are currently about 37 pages, covering about 30 major questions.
Oh, it's also worth saying, I saw the new GP, Dr H, about a week ago. I told her I was applying for DLA and about what happened last time. She told me there were in fact notes in my records about what happened last time, so I guess Dr W must have typed up a bit extra the last time I saw her before sending my notes here. Dr H confirmed a few bits and bobs from the screen ("yes, we've got stuff here about how you have trouble walking, can't walk without pain, about faints and dizzy spells, all that sort of thing") and then, the confirmation I really needed to hear:
"Yes, for the bit that asks about your GP, just put my name and the address of this surgery, they'll send us a form, and we will back you up. We will support your claim.".
Phew.
Wednesday, October 31, 2007
"Access" to work
I had my appointment with the Disability Employment Adviser (DEA) at the Jobcentre yesterday. We spent about an hour talking about what I would like to do, what my limitations are, what help I want, and the various rules about work and Incapacity Benefit. So that's pretty much the same conversation I had with the IB adviser last week, except the DEA seemed to know a bit more about the IB/work rules, or maybe she just felt more inclined to show off her knowledge.
The upshot is that I've been referred (surprise!) to Remploy, who hopefully will get in contact soon. I remain unsure about exactlywho they will refer me to what they will do for me.
Remploy or otherwise, the DEA thinks I should be eligible for an Access to Work grant for my transport, assuming I can get my doctor to confirm, in writing, that I do need the exact physical help that I am requesting.
I have registered at the local surgery, and I've had a kind of introductory appointment with the nurse, so that if I turn up because I'm oozing disturbingly, the system won't just throw up a blank - they have my height, weight, blood pressure, brief family history, that sort of thing. But I can't have a routine appointment with a doctor until my notes arrive from Lowestoft. This could take some weeks. When they arrive, the surgery will contact me and then I can make a routine appointment to see my named GP.
Then I get a ten-minute appointment slot to try and persuade said GP - who may or may not pay attention to my previous GP's notes, and whose standpoint on the veracity of my symptoms may well be unsympathetic - to write a letter saying "Mary can't actually walk very far at all and is unfit to drive". I'm trying not to think about that bit. Let's assume I'm successful.
This letter combined with the geographical fact of the house being some distance from the nearest bus route, should persuade the AtW gatekeepers that I am eligible for their scheme. After that I'm on my own until I have obtained a secure job offer to show them, and then the DEA will do the paperwork to apply for the grant for...
*curls up and sobs* Can someone tell me again why it is that I am doing this instead of simply being Steve's housewife?
Anyway. Once I have a GP's letter, I will finally be able to apply for jobs while feeling about 80% certain that when I begin a job I will be able to get to and from the workplace while remaining in profit.
Here's the rules:
1. If I do voluntary work for less than 16 hours a week, I must tell the Jobcentre, but it doesn't affect anything much - mostly it just covers my back if someone tries to report me for fraud saying "she works at [charity]!" I can get my expenses reimbursed by the voluntary-employer, but must not be paid for my work.
2. If I do paid work earning up to £20 a week, I must tell the Jobcentre, but I can keep the money and keep my benefit.
3. If I do paid work for less than 16 hours a week, earning up to about £80 a week, I must tell the Jobcentre, but I can keep the money and my benefit, for either 6 months or 12 months** depending on what my support status is deemed to be. After that time I must choose to (a) give up my benefit or (b) give up the job and not work again for a year.*
4. If I do paid work for more than 16 hours a week... well, that's all irrelevant really, there is not a snowball's chance in hell of me being able to do that any time in the forseeable future.
5. If I earn more than the aforementioned £80 a week... this is probably irrelevant too although I suppose it could happen. If it does, I'm simply telling the Jobcentre to stick it where the sun doesn't shine, as I wouldn't have a problem with taxi fares.
*Incapacity Benefit is about £80 a week. Wages for ten hours work at £5 an hour is £50 a week. So basically, I would have to decide whether to work my backside off for £50 a week plus my personal pride, or sacrifice my pride and sit on aforementioned backside for £80 a week**. What would you do?
**The idea of the time limit is that itforces encourages claimants to increase their hours to more than they can handle, sending them crashing back onto full-time benefit again more than 16 hours per week, and claim Working Tax Credits instead. Believe me when I say that the Tax Credits system is even more of a nightmare than the Jobcentre system, and that I would sooner work in the sex industry and live on the streets, than attempt to deal with Tax Credits again.
The upshot is that I've been referred (surprise!) to Remploy, who hopefully will get in contact soon. I remain unsure about exactly
Remploy or otherwise, the DEA thinks I should be eligible for an Access to Work grant for my transport, assuming I can get my doctor to confirm, in writing, that I do need the exact physical help that I am requesting.
I have registered at the local surgery, and I've had a kind of introductory appointment with the nurse, so that if I turn up because I'm oozing disturbingly, the system won't just throw up a blank - they have my height, weight, blood pressure, brief family history, that sort of thing. But I can't have a routine appointment with a doctor until my notes arrive from Lowestoft. This could take some weeks. When they arrive, the surgery will contact me and then I can make a routine appointment to see my named GP.
Then I get a ten-minute appointment slot to try and persuade said GP - who may or may not pay attention to my previous GP's notes, and whose standpoint on the veracity of my symptoms may well be unsympathetic - to write a letter saying "Mary can't actually walk very far at all and is unfit to drive". I'm trying not to think about that bit. Let's assume I'm successful.
This letter combined with the geographical fact of the house being some distance from the nearest bus route, should persuade the AtW gatekeepers that I am eligible for their scheme. After that I'm on my own until I have obtained a secure job offer to show them, and then the DEA will do the paperwork to apply for the grant for...
*curls up and sobs* Can someone tell me again why it is that I am doing this instead of simply being Steve's housewife?
Anyway. Once I have a GP's letter, I will finally be able to apply for jobs while feeling about 80% certain that when I begin a job I will be able to get to and from the workplace while remaining in profit.
Here's the rules:
1. If I do voluntary work for less than 16 hours a week, I must tell the Jobcentre, but it doesn't affect anything much - mostly it just covers my back if someone tries to report me for fraud saying "she works at [charity]!" I can get my expenses reimbursed by the voluntary-employer, but must not be paid for my work.
2. If I do paid work earning up to £20 a week, I must tell the Jobcentre, but I can keep the money and keep my benefit.
3. If I do paid work for less than 16 hours a week, earning up to about £80 a week, I must tell the Jobcentre, but I can keep the money and my benefit, for either 6 months or 12 months** depending on what my support status is deemed to be. After that time I must choose to (a) give up my benefit or (b) give up the job and not work again for a year.*
4. If I do paid work for more than 16 hours a week... well, that's all irrelevant really, there is not a snowball's chance in hell of me being able to do that any time in the forseeable future.
5. If I earn more than the aforementioned £80 a week... this is probably irrelevant too although I suppose it could happen. If it does, I'm simply telling the Jobcentre to stick it where the sun doesn't shine, as I wouldn't have a problem with taxi fares.
*Incapacity Benefit is about £80 a week. Wages for ten hours work at £5 an hour is £50 a week. So basically, I would have to decide whether to work my backside off for £50 a week plus my personal pride, or sacrifice my pride and sit on aforementioned backside for £80 a week**. What would you do?
**The idea of the time limit is that it
Friday, September 28, 2007
That explains a lot
I had a doctor's appointment the other day, and happily, it was Dr W, my GP of many years, just back from her maternity leave. The whole DLA, GP on leave, locum doctor who wouldn't listen to me thing has finally become much, much more clear.
(Brief recap for any new readers: earlier this year I got turned down for half my disability benefit largely on the basis of a report by Dr M, a locum who was covering the maternity leave of Dr W. This baffled and upset me as Dr W has always supported my benefit claim - it was her who insisted I stop work. Dr M reported that I suffer from depression, and that I have no difficulty doing many everyday tasks. This is inaccurate.)
It boils down to: Dr W is an extremely good GP. However, she would be a rubbish data entry clerk.
If you were to read the actual notes that Dr W has written about me over the last couple of years, they are covered in terms like "ME", "Chronic Fatigue Syndrome", "Post-Viral Fatigue Syndrome" and so on. They describe problems I have and how I overcome them, medications that have been tried and the effects they had, how I got on at the specialist ME/CFS clinic, everything you could want to know. You would see copies of the sicknotes with "Chronic Fatigue Syndrome" written large and clear, right up to the date when the DWP decided I didn't need to submit sicknotes any more.
If, however, you were only to glance at the front page of my computerised medical notes, you would have seen:
"Current ongoing conditions: none"
You would also see a note from the late 1990s suggesting I should be monitored for symptoms of depression and anxiety. The significantly more recent psychiatrist's letter giving me a mental health all-clear, is jumbled up with the reports from every other investigation into the possible causes of my illness that I underwent at that time - psychiatrist, neurologist, physiotherapist, and probably the butcher, baker and candlestick maker for good measure. You wouldn't see it unless you hunted for it.
Add to this, that I am not one of "those" patients, who marches off to the doctor every couple of weeks clutching an article about some revolutionary new cure or treatment or research. Since the Incapacity Benefit people decided I didn't have to provide sicknotes any more, I haven't actually been to see my GP about the whole ME thing, I've just turned up when I start oozing. Okay, so my tendency to get the sort of tonsillitis or ear infection that makes a practised GP recoil in horror and begin writing the scrip for antibiotics before they've even sat back down is because of the ME, but that's beside the point. If you look at the summaries of my recent visits on the notes, they're nothing to do with the ME.
So, let's look at my encounters with Dr M from a more sympathetic point of view.
A patient wobbles slowly into the consulting room, leaning on a walking stick and pulling faces. She gasps as she sits down, and explains she has come to see you about an ear infection. You look in her ear and sure enough, it's gunky. You look at her throat and that doesn't look too healthy either. You ask about other symptoms and she says that although she's having a bit more difficulty with certain things, it's just like an extra helping of her normal symptoms.
You quickly look at the notes on the screen. No ongoing conditions, the last thing she was here for was a throat infection, what's going on? What "normal symptoms"? What's with the stick? You ask what she means and she looks at you a bit funny before saying "the ME, or CFS, or whatever you want to call it." You spot a flag telling you to monitor her for mental health problems. Gently you ask a couple more questions. The patient says she's been like this for a couple of years, and no longer has a job. You can't quite make up your mind whether she's actually ill, or if she's a benefit scrounger, or if she's under some kind of delusion that she suffers a physical illness - she seems quite certain that it should be on her notes somewhere - but right now it's not terribly important. She has come here with an ear infection, she very obviously HAS an ear infection, so let's treat that and leave the rest for another day. Then, when you think you're home free, she tells you her benefit is being reviewed and that you may get a letter through asking for a GP's report. Great.
This also explains why Dr M was kind of obstructive when I asked to see my medical records. It could be psychologically damaging for a delusional person to read that their family GP thinks that they are delusional...
Dr W has of course apologised and corrected the front page. She's also made sure to put in plenty of information in the notes for our recent consultation a couple of days ago that might be important for whatever new doctor I get in Leamington - basically making sure the relevant details are at the top for a new GP. Yes, I realise there is a possibility that I am delusional and she is humouring me, or that I hallucinated the whole thing. But that just gets too metaphysical. I shall stick with the logic that, if the psychiatrists don't want to try and treat me, or even put me on a waiting list, and I'm not on psychiatric medication, and I'm not crying all the time, then I'm okay in that respect.
In other news... Stage One of the move has gone well. I will write more about it another time. For now, suffice to say that I am in one piece, partially unpacked, and very happy.
(Brief recap for any new readers: earlier this year I got turned down for half my disability benefit largely on the basis of a report by Dr M, a locum who was covering the maternity leave of Dr W. This baffled and upset me as Dr W has always supported my benefit claim - it was her who insisted I stop work. Dr M reported that I suffer from depression, and that I have no difficulty doing many everyday tasks. This is inaccurate.)
It boils down to: Dr W is an extremely good GP. However, she would be a rubbish data entry clerk.
If you were to read the actual notes that Dr W has written about me over the last couple of years, they are covered in terms like "ME", "Chronic Fatigue Syndrome", "Post-Viral Fatigue Syndrome" and so on. They describe problems I have and how I overcome them, medications that have been tried and the effects they had, how I got on at the specialist ME/CFS clinic, everything you could want to know. You would see copies of the sicknotes with "Chronic Fatigue Syndrome" written large and clear, right up to the date when the DWP decided I didn't need to submit sicknotes any more.
If, however, you were only to glance at the front page of my computerised medical notes, you would have seen:
"Current ongoing conditions: none"
You would also see a note from the late 1990s suggesting I should be monitored for symptoms of depression and anxiety. The significantly more recent psychiatrist's letter giving me a mental health all-clear, is jumbled up with the reports from every other investigation into the possible causes of my illness that I underwent at that time - psychiatrist, neurologist, physiotherapist, and probably the butcher, baker and candlestick maker for good measure. You wouldn't see it unless you hunted for it.
Add to this, that I am not one of "those" patients, who marches off to the doctor every couple of weeks clutching an article about some revolutionary new cure or treatment or research. Since the Incapacity Benefit people decided I didn't have to provide sicknotes any more, I haven't actually been to see my GP about the whole ME thing, I've just turned up when I start oozing. Okay, so my tendency to get the sort of tonsillitis or ear infection that makes a practised GP recoil in horror and begin writing the scrip for antibiotics before they've even sat back down is because of the ME, but that's beside the point. If you look at the summaries of my recent visits on the notes, they're nothing to do with the ME.
So, let's look at my encounters with Dr M from a more sympathetic point of view.
A patient wobbles slowly into the consulting room, leaning on a walking stick and pulling faces. She gasps as she sits down, and explains she has come to see you about an ear infection. You look in her ear and sure enough, it's gunky. You look at her throat and that doesn't look too healthy either. You ask about other symptoms and she says that although she's having a bit more difficulty with certain things, it's just like an extra helping of her normal symptoms.
You quickly look at the notes on the screen. No ongoing conditions, the last thing she was here for was a throat infection, what's going on? What "normal symptoms"? What's with the stick? You ask what she means and she looks at you a bit funny before saying "the ME, or CFS, or whatever you want to call it." You spot a flag telling you to monitor her for mental health problems. Gently you ask a couple more questions. The patient says she's been like this for a couple of years, and no longer has a job. You can't quite make up your mind whether she's actually ill, or if she's a benefit scrounger, or if she's under some kind of delusion that she suffers a physical illness - she seems quite certain that it should be on her notes somewhere - but right now it's not terribly important. She has come here with an ear infection, she very obviously HAS an ear infection, so let's treat that and leave the rest for another day. Then, when you think you're home free, she tells you her benefit is being reviewed and that you may get a letter through asking for a GP's report. Great.
This also explains why Dr M was kind of obstructive when I asked to see my medical records. It could be psychologically damaging for a delusional person to read that their family GP thinks that they are delusional...
Dr W has of course apologised and corrected the front page. She's also made sure to put in plenty of information in the notes for our recent consultation a couple of days ago that might be important for whatever new doctor I get in Leamington - basically making sure the relevant details are at the top for a new GP. Yes, I realise there is a possibility that I am delusional and she is humouring me, or that I hallucinated the whole thing. But that just gets too metaphysical. I shall stick with the logic that, if the psychiatrists don't want to try and treat me, or even put me on a waiting list, and I'm not on psychiatric medication, and I'm not crying all the time, then I'm okay in that respect.
In other news... Stage One of the move has gone well. I will write more about it another time. For now, suffice to say that I am in one piece, partially unpacked, and very happy.
Tuesday, September 18, 2007
Processing
Today, I've been doing a lot of the admin side of moving. This has involved listening to far too much hold-music, negotiating with automated systems, speaking to people with assorted flavours of so-broad-it's-barely-understandable accents from around the globe, and silent swearing when my mobile started to ring *just* as the people at the JobCentre said "Good afternoon, can I take your national insurance number?"
I started my day by sorting out some letters with the date that Steve and I have defined as the Official Moving Date. There's a letter to the landlord, and two to Waveney District Council - one for the Council Tax department and one for the Housing and Council Tax Benefit department (Waveney District Council rarely if ever answer their phones). I emailed the document to myself and went to mum's to print it out. Well, that was the plan. In real life, we discovered mum's printer had run out of ink (magenta ink to be precise, are there any b3tans with a confession to make?). I couldn't easily find a way to convince it that being out of magenta ink did not preclude printing a black and white text-only document, so I let her have the fun of reordering the cartridges while I went to the internet cafe a couple of doors down to print my stuff off there.
Home, a bit of lunch, a bit of a rest, and then I got on the phone, and in the case of TV licensing, the internet, because their automated voice-recognition system is beyond crap. Now it's half past four, and I've decided I'm finished for the phone for the day. My arms and shoulders ache from holding the handset up to my head, and my speech has gone completely, I simply don't make sense any more.
But I'm still not finished for sorting out this move. Let's recap.
DONE:
Notice to Landlord
Council Tax notification
Housing and Council Tax Benefit notification
TV license
Water (supply)
Water (sewerage) (these have to be separate here)
Phone (calls)
Phone (line rental)
Internet
Incapacity Benefit (except, I have to call them again once I've arranged a new GP at the other end)
CAN'T BE DONE YET:
Electricity (need a final meter reading five days before Official Move Date)
TO DO TOMORROW:
Bank
Building Society
Credit Card
Insurance
South Warwickshire PCT (for GP, dentist, etc. Still not entirely sure how this will work)
Can anyone think of anything I've missed? Gas isn't on the list because this is an electric-only flat, and I don't have a car or pet or gun license... ideas welcome.
This afternoon has reassured me that I still have a certain level of job skills, but reminded me that I mustn't get ahead of myself and apply for jobs where I'll have to concentrate for more than an hour or so at a time.
I started my day by sorting out some letters with the date that Steve and I have defined as the Official Moving Date. There's a letter to the landlord, and two to Waveney District Council - one for the Council Tax department and one for the Housing and Council Tax Benefit department (Waveney District Council rarely if ever answer their phones). I emailed the document to myself and went to mum's to print it out. Well, that was the plan. In real life, we discovered mum's printer had run out of ink (magenta ink to be precise, are there any b3tans with a confession to make?). I couldn't easily find a way to convince it that being out of magenta ink did not preclude printing a black and white text-only document, so I let her have the fun of reordering the cartridges while I went to the internet cafe a couple of doors down to print my stuff off there.
Home, a bit of lunch, a bit of a rest, and then I got on the phone, and in the case of TV licensing, the internet, because their automated voice-recognition system is beyond crap. Now it's half past four, and I've decided I'm finished for the phone for the day. My arms and shoulders ache from holding the handset up to my head, and my speech has gone completely, I simply don't make sense any more.
But I'm still not finished for sorting out this move. Let's recap.
DONE:
Notice to Landlord
Council Tax notification
Housing and Council Tax Benefit notification
TV license
Water (supply)
Water (sewerage) (these have to be separate here)
Phone (calls)
Phone (line rental)
Internet
Incapacity Benefit (except, I have to call them again once I've arranged a new GP at the other end)
CAN'T BE DONE YET:
Electricity (need a final meter reading five days before Official Move Date)
TO DO TOMORROW:
Bank
Building Society
Credit Card
Insurance
South Warwickshire PCT (for GP, dentist, etc. Still not entirely sure how this will work)
Can anyone think of anything I've missed? Gas isn't on the list because this is an electric-only flat, and I don't have a car or pet or gun license... ideas welcome.
This afternoon has reassured me that I still have a certain level of job skills, but reminded me that I mustn't get ahead of myself and apply for jobs where I'll have to concentrate for more than an hour or so at a time.
Monday, September 10, 2007
Discoveries
For various reasons, it's seemed like a good idea to start tidying up the flat a bit this week. It's not UN-tidy as such - day to day things like the dishes and the laundry and making sure there's no new life-forms in the fridge are well under control - but there's some less urgent stuff that wanted doing, like pruning my wardrobe and vacuuming under the bed.
This morning I had a wardrobe full of clothes and Nothing To Wear. Now I have five bags of clothes for my sister to go through and a wardrobe that's about a third full of everyday clothes which (with only one or two exceptions such as my one Smart Suit) I have worn and washed at least once in the last twelve months. I think this is an improvement.
I also found at least half a dozen pairs of black tights (I have kept two pairs which were still on the cardboard), a couple of bits of lacy underwear which had hidden behind my socks and still had the tags in, and three or four rather small tops which I used to wear when I was very fit and went out to dance for several hours at least once a week. I'm not even going to try to try them on, I don't think I could deal with that kind of trauma. Sister Dearest will love them though.
Having got over that little blast from the past, I started to tackle the depths of under my bed. At first it wasn't too bad, it was all stuff I knew was there. A plastic box containing my spare duvet. A pair of wings and a halo from a fancy dress competition in the aforementioned going-out-and-dancing days (*sniff*) that someone borrowed last year. A large sports bag which I have lugged around more train stations than I care to remember while on weekend jaunts to see various internet people. I could even run up and down stairs while carrying it and never missed a connection...
*sniff*
*sneezes from dust*
This didn't put me in the right frame of mind to hit The Paperwork.
There was a period, when I first got sick, where I didn't really realise what was going on and thought I just had a couple of nasty bugs and would get over it. This wasn't a happy time. When I look back now, I realise I was being ridiculous, but at the time, I thought I was making sense.
So there were a number of incidents to do with me fainting but refusing to go to hospital because I was running late for work and had clients to see and "it's just a bit of flu or something". There were also a number of times when I walked into the building where I worked and someone from another organisation took one look at me and pretty much forcibly ushered me into their car and drove me straight back home.
In these circumstances, paperwork wasn't top of my priorities. I would come in the front door, pick up my post, go up the stairs to my flat, and lie down on my bed and go to sleep, complete with my handful of post, my glasses, my coat, my bag, my shoes, everything. Stuff on the bed got pushed off the bed, and eventually underneath it.
Which is why today's discoveries were lurking there to upset me. I'm not sure what's worse. There's the stuff I do remember - handouts from work-based training I did and meetings I went to, printouts of emails, a magazine, some train tickets - which remind me of the life I used to have. And then, there's the stuff I don't remember, and it scares me a little that I don't remember it. Like, a tesco clubcard and two key fobs, still stuck to the letter they came with. The name is mine, the address is here, but I can't remember applying for it - and how can I have been too knackered to sign the card and stick it in my purse? Or an invite to a party I'm fairly certain I didn't go to. I hope I at least phoned to apologise.
I'm feeling very angry and I can't put my finger on exactly why. It's not that I want my old life back. I mean, it would be nice to not be in pain, or confined to bed so much (and it would be nice to be a size 10 again). But if giving up the pain and malaise (and excess flab) also meant giving up the friends I've made, the relationship with Steve, the steadiness I've acquired, and picking up at age 23 again, I would not do it.
I think the anger might be because the shift in pace and circumstances was not my choice. I didn't want to become unemployed, and I didn't "deserve" to get ill or do anything that made me ill. It was all completely out of my control and I hate that.
Carrying on from that, I think it's also affected by Sister Dearest. She's currently the same age I was when it all fell apart, and she *is* in control of her life, she *has* chosen to leave her job, she actively says and does things to steer her life in the direction she *wants* it to go.
Nah. I think it's mostly because I have done too much physically today. Also I have been inhaling two-year-old dust and that can't be good for you. Here's hoping I feel perkier tomorrow and that Sister Dearest enjoys my castoffs.
Oh, and good news. I have a routine doctor's appointment coming up in two weeks, and I've just found out that it will be with my actual proper GP, the lovely Dr W, rather than the smegging bloody Locum who cocked up my DLA. Hurrah!
This morning I had a wardrobe full of clothes and Nothing To Wear. Now I have five bags of clothes for my sister to go through and a wardrobe that's about a third full of everyday clothes which (with only one or two exceptions such as my one Smart Suit) I have worn and washed at least once in the last twelve months. I think this is an improvement.
I also found at least half a dozen pairs of black tights (I have kept two pairs which were still on the cardboard), a couple of bits of lacy underwear which had hidden behind my socks and still had the tags in, and three or four rather small tops which I used to wear when I was very fit and went out to dance for several hours at least once a week. I'm not even going to try to try them on, I don't think I could deal with that kind of trauma. Sister Dearest will love them though.
Having got over that little blast from the past, I started to tackle the depths of under my bed. At first it wasn't too bad, it was all stuff I knew was there. A plastic box containing my spare duvet. A pair of wings and a halo from a fancy dress competition in the aforementioned going-out-and-dancing days (*sniff*) that someone borrowed last year. A large sports bag which I have lugged around more train stations than I care to remember while on weekend jaunts to see various internet people. I could even run up and down stairs while carrying it and never missed a connection...
*sniff*
*sneezes from dust*
This didn't put me in the right frame of mind to hit The Paperwork.
There was a period, when I first got sick, where I didn't really realise what was going on and thought I just had a couple of nasty bugs and would get over it. This wasn't a happy time. When I look back now, I realise I was being ridiculous, but at the time, I thought I was making sense.
So there were a number of incidents to do with me fainting but refusing to go to hospital because I was running late for work and had clients to see and "it's just a bit of flu or something". There were also a number of times when I walked into the building where I worked and someone from another organisation took one look at me and pretty much forcibly ushered me into their car and drove me straight back home.
In these circumstances, paperwork wasn't top of my priorities. I would come in the front door, pick up my post, go up the stairs to my flat, and lie down on my bed and go to sleep, complete with my handful of post, my glasses, my coat, my bag, my shoes, everything. Stuff on the bed got pushed off the bed, and eventually underneath it.
Which is why today's discoveries were lurking there to upset me. I'm not sure what's worse. There's the stuff I do remember - handouts from work-based training I did and meetings I went to, printouts of emails, a magazine, some train tickets - which remind me of the life I used to have. And then, there's the stuff I don't remember, and it scares me a little that I don't remember it. Like, a tesco clubcard and two key fobs, still stuck to the letter they came with. The name is mine, the address is here, but I can't remember applying for it - and how can I have been too knackered to sign the card and stick it in my purse? Or an invite to a party I'm fairly certain I didn't go to. I hope I at least phoned to apologise.
I'm feeling very angry and I can't put my finger on exactly why. It's not that I want my old life back. I mean, it would be nice to not be in pain, or confined to bed so much (and it would be nice to be a size 10 again). But if giving up the pain and malaise (and excess flab) also meant giving up the friends I've made, the relationship with Steve, the steadiness I've acquired, and picking up at age 23 again, I would not do it.
I think the anger might be because the shift in pace and circumstances was not my choice. I didn't want to become unemployed, and I didn't "deserve" to get ill or do anything that made me ill. It was all completely out of my control and I hate that.
Carrying on from that, I think it's also affected by Sister Dearest. She's currently the same age I was when it all fell apart, and she *is* in control of her life, she *has* chosen to leave her job, she actively says and does things to steer her life in the direction she *wants* it to go.
Nah. I think it's mostly because I have done too much physically today. Also I have been inhaling two-year-old dust and that can't be good for you. Here's hoping I feel perkier tomorrow and that Sister Dearest enjoys my castoffs.
Oh, and good news. I have a routine doctor's appointment coming up in two weeks, and I've just found out that it will be with my actual proper GP, the lovely Dr W, rather than the smegging bloody Locum who cocked up my DLA. Hurrah!
Monday, June 11, 2007
Progress
My stress has wound down several more notches, thanks to fantastic support from Steve, and from my family and friends here, and also (I realise this sounds cheesy) because of the blogger support.
A commenter on an earlier post linked me to Benefits And Work, and a quick Paypal of £16.50 later, there was an absolute wealth of useful information at my fingertips.
As well as all this information and support, I believe I've established the difference between a Reconsideration and an Appeal. I'm not doing an Appeal. An Appeal is a scary thing full of solicitors and panels and hearings and tribunals, yeeech. I'm doing a Reconsideration, which as I understand it, just means that a different Decision Maker will look at my case in 28 days time from when I phoned them. I can use those 28 days to submit any additional, supplemental or new evidence that I would like a Decision Maker to look at. Or not. But either way, it doesn't have to involve comprehension of legalese on my part.
I've had a good think about what evidence I would like to include that they don't already have. Here's my list:
- A step-by-step refutation of their reasons for the non-award decision ("you said [this], in fact the case is [this], as backed up by [evidence].") although I can't make a start on this until I get their written list of reasons, which could take another week from now.
- The report from the specialist ME/CFS clinic at the hospital. It's over a year old, but it includes such handy phrases as "Mary has classic chronic fatigue syndrome" as well as information about my pain and activity levels. I already have the patient copy of this document.
- A proper written explanation of the issues with the locum doing the GP's report, including a reminder that I flagged this issue at the time and well before they made the decision to not award DLA, or in other words, that I'm not making up issues because I'm all upset by their decision.
- A written statement from Steve regarding my care and mobility needs from his perspective as someone who sometimes looks after me. Mum already did one (albeit a short one), as part of my original renewal forms. I'd ask Pip too, but he's got a lot on his plate at the moment.
- The forms and GP's Report (by my actual proper GP) for my successful Incapacity Benefit renewal back in February. I have requested to be sent these, although I am warned it may take "a few days" as they have "probably gone to the storage facility already".
I also rang my GP's surgery and asked if I could have a copy of my notes for the last three years. Unfortunately the receptionist said I had to ask my GP, or in real terms, I had to ask the infamous Dr M. It was agreed that Dr M would call me back, which she did, when I was in the middle of my nap and in no position to deal with anything let alone start insisting. She told me that my notes would only be relevant if I went to an Appeal and my solicitor made a formal request for them. I do not have it in me to fight her. So I do not have access to my medical records. However, I'm toying with appropriate wording to explain in my Reconsideration covering letter that I believe there may be additional supporting evidence for my claim in my medical notes, but have been unable to gain access to them. Not sure.
Hopefully, this will be enough.
In better news...
I've finished the cable pocket on the knitted knitting needle case. Only one real hiccup, that was when I started looking at the wrong place on the page and knitted the final few rows that should have been on the Fair Isle pocket onto the end of the cable pocket. But it was easy enough to undo. Oh, and if anyone knows of an insanely simple explanation of Fair Isle online, please do recommend it in the comments.
My houseplant is still thriving. At this rate, it will see me through moving to Steve's (still no date set so don't get excited), which will be the third house-move it's done with me.
For dinner I had salad and a lasagne. Asda own-brand straightforward lasagne (in other words, not Extra Value or Low Fat or any other faff), microwaveable, £1, and it tastes bloody lovely. I would go so far as to say it's the nicest microwave lasagne I've had, and trust me, I know what I'm talking about. I shall have to buy more.
And now I'm off to bed, and I have ALL the bed to myself. Swings and roundabouts...
A commenter on an earlier post linked me to Benefits And Work, and a quick Paypal of £16.50 later, there was an absolute wealth of useful information at my fingertips.
As well as all this information and support, I believe I've established the difference between a Reconsideration and an Appeal. I'm not doing an Appeal. An Appeal is a scary thing full of solicitors and panels and hearings and tribunals, yeeech. I'm doing a Reconsideration, which as I understand it, just means that a different Decision Maker will look at my case in 28 days time from when I phoned them. I can use those 28 days to submit any additional, supplemental or new evidence that I would like a Decision Maker to look at. Or not. But either way, it doesn't have to involve comprehension of legalese on my part.
I've had a good think about what evidence I would like to include that they don't already have. Here's my list:
- A step-by-step refutation of their reasons for the non-award decision ("you said [this], in fact the case is [this], as backed up by [evidence].") although I can't make a start on this until I get their written list of reasons, which could take another week from now.
- The report from the specialist ME/CFS clinic at the hospital. It's over a year old, but it includes such handy phrases as "Mary has classic chronic fatigue syndrome" as well as information about my pain and activity levels. I already have the patient copy of this document.
- A proper written explanation of the issues with the locum doing the GP's report, including a reminder that I flagged this issue at the time and well before they made the decision to not award DLA, or in other words, that I'm not making up issues because I'm all upset by their decision.
- A written statement from Steve regarding my care and mobility needs from his perspective as someone who sometimes looks after me. Mum already did one (albeit a short one), as part of my original renewal forms. I'd ask Pip too, but he's got a lot on his plate at the moment.
- The forms and GP's Report (by my actual proper GP) for my successful Incapacity Benefit renewal back in February. I have requested to be sent these, although I am warned it may take "a few days" as they have "probably gone to the storage facility already".
I also rang my GP's surgery and asked if I could have a copy of my notes for the last three years. Unfortunately the receptionist said I had to ask my GP, or in real terms, I had to ask the infamous Dr M. It was agreed that Dr M would call me back, which she did, when I was in the middle of my nap and in no position to deal with anything let alone start insisting. She told me that my notes would only be relevant if I went to an Appeal and my solicitor made a formal request for them. I do not have it in me to fight her. So I do not have access to my medical records. However, I'm toying with appropriate wording to explain in my Reconsideration covering letter that I believe there may be additional supporting evidence for my claim in my medical notes, but have been unable to gain access to them. Not sure.
Hopefully, this will be enough.
In better news...
I've finished the cable pocket on the knitted knitting needle case. Only one real hiccup, that was when I started looking at the wrong place on the page and knitted the final few rows that should have been on the Fair Isle pocket onto the end of the cable pocket. But it was easy enough to undo. Oh, and if anyone knows of an insanely simple explanation of Fair Isle online, please do recommend it in the comments.
My houseplant is still thriving. At this rate, it will see me through moving to Steve's (still no date set so don't get excited), which will be the third house-move it's done with me.
For dinner I had salad and a lasagne. Asda own-brand straightforward lasagne (in other words, not Extra Value or Low Fat or any other faff), microwaveable, £1, and it tastes bloody lovely. I would go so far as to say it's the nicest microwave lasagne I've had, and trust me, I know what I'm talking about. I shall have to buy more.
And now I'm off to bed, and I have ALL the bed to myself. Swings and roundabouts...
Saturday, June 02, 2007
Cured?
This morning I got a phone call from my mum. In a wonderful piece of timing with me being on holiday (so I don't have my file) AND it being a Saturday (so all helplines etc are closed), a letter has turned up from the Department of Work and Pensions.
I have been turned down for Disability Living Allowance.
Not reduced, but turned down flat.
Option 1: I have magically been cured. I'll go out and get a 40-hour-a-week job now, and start living my social life to the max too. I have to go shopping now, to get some new trainers for the marathons I'll be running this summer.
Option 2: The effects the illness has on my life are the same as ever, but the discrepancies between what I wrote on my forms about my condition and day-to-day life, and what the woman standing in for "my GP" wrote on her forms, has led them to think that one or the other of us is telling porkies. Obviously people with medical degrees don't ever make mistakes or get things wrong, therefore my statements are the ones which are wrong, and I need no help whatsoever with my care or mobility needs.
I have just under a month (28 days starting from the date their letter was written) to try and sort this mess out. Steve was going to be taking me home next week anyway, but now it will be nearer the beginning of the week than the end.
Plan:
1. Draft some letters to the DWP. I may be able to find some templates online to help with this once I've got my head together.
2. Contact the ME/CFS clinic at the hospital who gave me the definite diagnosis of "yes, you have classic ME" and ask if they can reassess me.
3. Contact DIAL and see if they can help me.
3(b). If DIAL can't help, call Pip and arrange for him to help me lay siege to the Citizen's Advice Bureau (unfortunately the local CAB have broken email and don't answer the phone due to terminal understaffing, so you have to go in person and a wait of four hours or more should be prepared for).
4. Go through all my accounts and carefully plan my expenditure for the next year, eg exactly how much will be needed for rent, bills, etc.
5. Learn how to knit socks.
Other thoughts:
At least I've already done this once. When I lost my job, and the lovely income that went with it, I managed to trim things down until my outgoings were essential bills (rent, council tax, electric, water, landline phone line rental) plus £15 a week for everything else - from food to transport to phone calls/internet to toothpaste to Christmas presents. It wasn't much of a lifestyle, granted, and involved a lot of Lidl's pasta, but I definitely survived and I damn well will again.
Plus, I have the long-term incapacity benefit award (as supported by Dr W...) so at least there is a fixed income I can rely on, rather than trying to live out of savings.
Forecast: Sunny spells, but with intermittent tears and mood swings for a while. Warning! Warning! Flooding may occur.
I have been turned down for Disability Living Allowance.
Not reduced, but turned down flat.
Option 1: I have magically been cured. I'll go out and get a 40-hour-a-week job now, and start living my social life to the max too. I have to go shopping now, to get some new trainers for the marathons I'll be running this summer.
Option 2: The effects the illness has on my life are the same as ever, but the discrepancies between what I wrote on my forms about my condition and day-to-day life, and what the woman standing in for "my GP" wrote on her forms, has led them to think that one or the other of us is telling porkies. Obviously people with medical degrees don't ever make mistakes or get things wrong, therefore my statements are the ones which are wrong, and I need no help whatsoever with my care or mobility needs.
I have just under a month (28 days starting from the date their letter was written) to try and sort this mess out. Steve was going to be taking me home next week anyway, but now it will be nearer the beginning of the week than the end.
Plan:
1. Draft some letters to the DWP. I may be able to find some templates online to help with this once I've got my head together.
2. Contact the ME/CFS clinic at the hospital who gave me the definite diagnosis of "yes, you have classic ME" and ask if they can reassess me.
3. Contact DIAL and see if they can help me.
3(b). If DIAL can't help, call Pip and arrange for him to help me lay siege to the Citizen's Advice Bureau (unfortunately the local CAB have broken email and don't answer the phone due to terminal understaffing, so you have to go in person and a wait of four hours or more should be prepared for).
4. Go through all my accounts and carefully plan my expenditure for the next year, eg exactly how much will be needed for rent, bills, etc.
5. Learn how to knit socks.
Other thoughts:
At least I've already done this once. When I lost my job, and the lovely income that went with it, I managed to trim things down until my outgoings were essential bills (rent, council tax, electric, water, landline phone line rental) plus £15 a week for everything else - from food to transport to phone calls/internet to toothpaste to Christmas presents. It wasn't much of a lifestyle, granted, and involved a lot of Lidl's pasta, but I definitely survived and I damn well will again.
Plus, I have the long-term incapacity benefit award (as supported by Dr W...) so at least there is a fixed income I can rely on, rather than trying to live out of savings.
Forecast: Sunny spells, but with intermittent tears and mood swings for a while. Warning! Warning! Flooding may occur.
Tuesday, May 01, 2007
New Doctor - a follow up
A while ago I mentioned my concerns about how I am renewing my Disability Living Allowance (DLA) and they want a report from my GP, but my GP is on maternity leave, so the GP's report will be filled in by a locum.
Unhappily, it seems that my fears were not completely unfounded.
Today was the day that Dr M (the locum) had asked me to come in for a double appointment so that she could fill in her part of the form. I went into her office, exchanged greetings, asked how she was, and sat down, just like always. She scrolled through my notes on the computer for a brief moment - perhaps five seconds by the clock - and then scrawled across the first box, the one asking what my illness is... "Anxiety and depression".
Sure, I sometimes get a bit anxious. I sometimes get a bit depressed. But not clinically so. I was given a low dose of antidepressant in the early stages of my illness. I did feel, and tell my GP I was feeling, both anxious and depressed about the new limitations on my way of life. She told me she was prescribing the antidepressant to cushion the blow of losing my job/hobbies/lifestyle, and because "sometimes it helps with ME. It doesn't hurt to try." In time I came to terms with things, and I've now come off the antidepressants, best part of a year ago, perfectly successfully - an opinion my real GP, Dr W, shares. If she felt I required treatment for anxiety or depression, she would refer me for it and I would attend it. I have absolute confidence in Dr W to do stuff like that.
I try not to swear on this blog, but with all that in mind, where the shuddering FUCK does this new girl get off, casually writing an inaccurate, or at best, incomplete diagnosis across a form that has a big impact on my life?
Dr M then cheerfully moved on to the next part of the form, that asks about any specialists I see. Asking me, but looking at the computer notes, she saw that I went to the specialist ME/CFS clinic at one of the local hospitals, and that there is a report from Dr Terry Mitchell, an expert in the field. Only when she saw that Dr Mitchell himself had seen me, assessed me, and confirmed in writing and in so many words that I *do* have ME/CFS and *don't* have depression, did she go back and add "CFS" to the box on the form asking for my diagnoses. However, it's in small writing, tucked underneath the large central "anxiety and depression", which hasn't been crossed out.
From then on, the consultation felt like some kind of horrible parody. She spoke too quickly, confused the hell out of me, and I couldn't get my words in the right order or quick enough to stop her. She was looking at the form muttering "washing, feeding, [unintelligible], getting dressed, no, you don't have any problems with those..." and I only just managed to say in time "yes I do!" - she looked like she was going to cross through the box. A little later, she stated "I can't imagine you have any trouble being aware of danger," and I told her to tell that to the friends who keep having to pull me back from the road because I'm concentrating so hard on walking that I forget to pay attention to traffic. It was all going too fast, I didn't get a chance to describe any of my symptoms properly or adequately explain any of the problems I have.
I'm fairly sure my mobility is part of that form. It was Dr W who first suggested to me that I should get a wheelchair and a mobility scooter - Dr M, however, doesn't even know I have them or the difference they make to my life, and she certainly didn't ask me anything about what walking is like for me.
I'm fairly sure that equipment I use is part of that form. Dr W has spent time discussing with me all sorts of tips and equipment for remembering medication and managing stuff, but Dr M has assumed I'm automagically fine with it all.
I'm fairly sure that my care needs are part of that form. Dr W knows the extent of care and support I get from my family and friends, because she's my family GP. Dr M was filling out the form murmuring things like "you're pretty much independent then, yes..."
Dr W lets me bloody well finish a sentence. Dr M starts writing my answers in before I've opened my mouth.
After just under ten minutes of this gobsmacking whirlwind of misapprehensions (oh, looks like we didn't need a double appointment after all), Dr M squiggled her signature on the form and clipped it back together. God knows what she's written on it. It should get faxed to the DWP late today or some time tomorrow (so I'll call them in a week or so to make sure it's definitely been recieved, as they're notorious for "losing" documents). Then she made it entirely, bluntly clear that the consultation was over, and even seemed impatient with me struggling to stand - although I may have imagined that, as I was feeling pretty overwhelmed by then.
As I waited outside the surgery for a taxi home, the headmuddle resolved itself first into worry (oh no, her report will be completely different to what I've said on my forms because I didn't explain myself properly) and then into anger (godammit, her report will be completely different from the actual truth because she wouldn't listen to me or read the notes properly).
By the time I got home, I'd got the anger into annoyedness (gah, her report will be significantly different to what Dr W would have written) and worked out a plan. I've called the DWP, explained the situation, and asked what we could do. The call-taker asked if I wanted to request that they ignore the report, but I said no (because I understand that she's attaching Dr Mitchell's report from the CFS clinic, and that IS worth a read to anyone assessing me). But she put a note on my file, and read it back to me to confirm it, to the effect that I have "raised concerns" about my GP's report being from a locum, rather than the GP who manages my illness, and that I do not feel the locum is fully informed or understanding of my condition.
I'm knackered, so sorry that this wasn't my best ever post. I'm also a bit concerned that if my application is turned down on the basis of Dr M's assumptions, I don't know how I'll manage to see through an appeal. I really could have done without this. I don't think I'm the illest person on earth and I have no desire to play the system, but I would like the doctor I see to listen to me, and I want to receive the benefits I am reasonably entitled to.
Unhappily, it seems that my fears were not completely unfounded.
Today was the day that Dr M (the locum) had asked me to come in for a double appointment so that she could fill in her part of the form. I went into her office, exchanged greetings, asked how she was, and sat down, just like always. She scrolled through my notes on the computer for a brief moment - perhaps five seconds by the clock - and then scrawled across the first box, the one asking what my illness is... "Anxiety and depression".
Sure, I sometimes get a bit anxious. I sometimes get a bit depressed. But not clinically so. I was given a low dose of antidepressant in the early stages of my illness. I did feel, and tell my GP I was feeling, both anxious and depressed about the new limitations on my way of life. She told me she was prescribing the antidepressant to cushion the blow of losing my job/hobbies/lifestyle, and because "sometimes it helps with ME. It doesn't hurt to try." In time I came to terms with things, and I've now come off the antidepressants, best part of a year ago, perfectly successfully - an opinion my real GP, Dr W, shares. If she felt I required treatment for anxiety or depression, she would refer me for it and I would attend it. I have absolute confidence in Dr W to do stuff like that.
I try not to swear on this blog, but with all that in mind, where the shuddering FUCK does this new girl get off, casually writing an inaccurate, or at best, incomplete diagnosis across a form that has a big impact on my life?
Dr M then cheerfully moved on to the next part of the form, that asks about any specialists I see. Asking me, but looking at the computer notes, she saw that I went to the specialist ME/CFS clinic at one of the local hospitals, and that there is a report from Dr Terry Mitchell, an expert in the field. Only when she saw that Dr Mitchell himself had seen me, assessed me, and confirmed in writing and in so many words that I *do* have ME/CFS and *don't* have depression, did she go back and add "CFS" to the box on the form asking for my diagnoses. However, it's in small writing, tucked underneath the large central "anxiety and depression", which hasn't been crossed out.
From then on, the consultation felt like some kind of horrible parody. She spoke too quickly, confused the hell out of me, and I couldn't get my words in the right order or quick enough to stop her. She was looking at the form muttering "washing, feeding, [unintelligible], getting dressed, no, you don't have any problems with those..." and I only just managed to say in time "yes I do!" - she looked like she was going to cross through the box. A little later, she stated "I can't imagine you have any trouble being aware of danger," and I told her to tell that to the friends who keep having to pull me back from the road because I'm concentrating so hard on walking that I forget to pay attention to traffic. It was all going too fast, I didn't get a chance to describe any of my symptoms properly or adequately explain any of the problems I have.
I'm fairly sure my mobility is part of that form. It was Dr W who first suggested to me that I should get a wheelchair and a mobility scooter - Dr M, however, doesn't even know I have them or the difference they make to my life, and she certainly didn't ask me anything about what walking is like for me.
I'm fairly sure that equipment I use is part of that form. Dr W has spent time discussing with me all sorts of tips and equipment for remembering medication and managing stuff, but Dr M has assumed I'm automagically fine with it all.
I'm fairly sure that my care needs are part of that form. Dr W knows the extent of care and support I get from my family and friends, because she's my family GP. Dr M was filling out the form murmuring things like "you're pretty much independent then, yes..."
Dr W lets me bloody well finish a sentence. Dr M starts writing my answers in before I've opened my mouth.
After just under ten minutes of this gobsmacking whirlwind of misapprehensions (oh, looks like we didn't need a double appointment after all), Dr M squiggled her signature on the form and clipped it back together. God knows what she's written on it. It should get faxed to the DWP late today or some time tomorrow (so I'll call them in a week or so to make sure it's definitely been recieved, as they're notorious for "losing" documents). Then she made it entirely, bluntly clear that the consultation was over, and even seemed impatient with me struggling to stand - although I may have imagined that, as I was feeling pretty overwhelmed by then.
As I waited outside the surgery for a taxi home, the headmuddle resolved itself first into worry (oh no, her report will be completely different to what I've said on my forms because I didn't explain myself properly) and then into anger (godammit, her report will be completely different from the actual truth because she wouldn't listen to me or read the notes properly).
By the time I got home, I'd got the anger into annoyedness (gah, her report will be significantly different to what Dr W would have written) and worked out a plan. I've called the DWP, explained the situation, and asked what we could do. The call-taker asked if I wanted to request that they ignore the report, but I said no (because I understand that she's attaching Dr Mitchell's report from the CFS clinic, and that IS worth a read to anyone assessing me). But she put a note on my file, and read it back to me to confirm it, to the effect that I have "raised concerns" about my GP's report being from a locum, rather than the GP who manages my illness, and that I do not feel the locum is fully informed or understanding of my condition.
I'm knackered, so sorry that this wasn't my best ever post. I'm also a bit concerned that if my application is turned down on the basis of Dr M's assumptions, I don't know how I'll manage to see through an appeal. I really could have done without this. I don't think I'm the illest person on earth and I have no desire to play the system, but I would like the doctor I see to listen to me, and I want to receive the benefits I am reasonably entitled to.
Saturday, April 14, 2007
New Doctor
Firstly, after the bout of knitting woes, things started going better again. I now have a blue swatch of ribbing and am part-way through a blue swatch of seed stitch (aka moss stitch). I think this is my favourite so far to look at and feel, but it does seem to take a bit longer to get to the end of the row.
Secondly, I've had a letter from the Disability Living Allowance people, explaining that they have received my claim renewal, and want to write to my GP for more information. That's pretty normal and nothing to worry about. After all, it'd be a bit pointless if they didn't check with at least one medically qualified person.
When I first applied, just under two years ago, I was quite pleased to hear that they would contact my GP. Dr W has known me and my family since I was a kiddie. She saw my childhood illnesses, my mum's long-term health problems, my marriage and subsequent divorce, my teenage smear-test scare. She's the person who diagnosed me with The Lurgy. She knows me well enough to know I'm not the sort of person who would be trying it on. She knows the sort of lifestyle I had before I got ill, and how it compares to the activity levels I have now. I could not think of a non-family person better placed to give the DWP useful, in-depth and accurate information about my health.
She is also, currently, on maternity leave.
I have seen Dr M, the locum who is covering for her, twice. Both times were follow-ups regarding an ear infection I had a while back. She was very nice, efficient, and gave the impression that she knew what she was talking about. Unfortunately my ear infection had sweet buggerall to do with my Long Term Lurgy, unless you count that I've had as many, if not more, visible "oozy" acute infections (yum) in the last couple of years since I got ill, than I had in the fifteen years before.
So, when I saw her about the ear thing, I mentioned that I was working on a DLA renewal and that they might want Dr W's input, which may fall to her. She smiled and said this had already happened with one of Dr W's patients - what she would like to do is make a long appointment with me once they contact her, and we can go through her part of the form then.
No problem, right?
Uh...
My diagnosis label is "ME/CFS". In non-medical terms that means "we don't know". There are three main schools of thought. One is that people with ME/CFS have a psychiatric problem - that the reason we experience the physical symptoms is because of some past uncovered trauma, or low self-esteem, or stress issues. Sort of like a panic attack, only instead of the physical manifestation of our mental issues being shivering and trouble breathing and pounding pulse, we get the pain and whatnot, and instead of it being for a few minutes at a time, it's more or less constant. Another viewpoint is that people with ME/CFS have a biological problem that medical science doesn't have a conclusive test or cure for yet. Medical research from the biological viewpoint is ongoing but underfunded - after all, ME isn't a spectacular illness with a high death rate. The other widely held opinion is that people with ME/CFS are making it all up, for fun/attention/time off work. Thankfully this is more rife among the general public than the medical profession.
I do not know which of these theories Dr M subscribes to.
Dr W can confidently feel certain I'm not malingering, because she has known me for many years. How to convince Dr M, who I've known for all of fifteen minutes, that I'm not a workshy scumbag?
Similarly, I know that if Dr W thought my problems were psychiatric, she would have immediately referred me for whatever flavour of psychiatric help she deemed most appropriate. As such, on my original DLA forms, the minor mental health trouble I had were listed as a secondary effect of my illness - in other words, that I got bouts of depression and mood swings because I lost my job/was unable to go out like I used to/got frustrated by my physical limitations/was in a large amount of pain. But what if, this time, Dr M puts it all in as "mental health"? Will they consider my illness to have changed, and would I get into trouble for that?
Or even if Dr M accepts that I'm not making it up and am psychiatrically sound, how do I properly describe the effects my illness has on me without sounding like a whinger? When I'm meeting people, particularly if I don't know them well, I try to be positive and upbeat, try to make a good impression. I'm full of painkillers and if the illness comes up I say things like "the hourly pay sucks but the parking's great" or "meh, it's only a bit of pain, it's not actually going to kill me". What the DLA people need to know about are the bits I don't like people to see - about the pain that is so bad it reduces me to tears, the dizziness that makes me vomit, the lack of dexterity that makes me drop my plate of dinner all over myself and the floor. See, you can hear those violins already. So how do I give a clear picture without giving a bad impression?
Secondly, I've had a letter from the Disability Living Allowance people, explaining that they have received my claim renewal, and want to write to my GP for more information. That's pretty normal and nothing to worry about. After all, it'd be a bit pointless if they didn't check with at least one medically qualified person.
When I first applied, just under two years ago, I was quite pleased to hear that they would contact my GP. Dr W has known me and my family since I was a kiddie. She saw my childhood illnesses, my mum's long-term health problems, my marriage and subsequent divorce, my teenage smear-test scare. She's the person who diagnosed me with The Lurgy. She knows me well enough to know I'm not the sort of person who would be trying it on. She knows the sort of lifestyle I had before I got ill, and how it compares to the activity levels I have now. I could not think of a non-family person better placed to give the DWP useful, in-depth and accurate information about my health.
She is also, currently, on maternity leave.
I have seen Dr M, the locum who is covering for her, twice. Both times were follow-ups regarding an ear infection I had a while back. She was very nice, efficient, and gave the impression that she knew what she was talking about. Unfortunately my ear infection had sweet buggerall to do with my Long Term Lurgy, unless you count that I've had as many, if not more, visible "oozy" acute infections (yum) in the last couple of years since I got ill, than I had in the fifteen years before.
So, when I saw her about the ear thing, I mentioned that I was working on a DLA renewal and that they might want Dr W's input, which may fall to her. She smiled and said this had already happened with one of Dr W's patients - what she would like to do is make a long appointment with me once they contact her, and we can go through her part of the form then.
No problem, right?
Uh...
My diagnosis label is "ME/CFS". In non-medical terms that means "we don't know". There are three main schools of thought. One is that people with ME/CFS have a psychiatric problem - that the reason we experience the physical symptoms is because of some past uncovered trauma, or low self-esteem, or stress issues. Sort of like a panic attack, only instead of the physical manifestation of our mental issues being shivering and trouble breathing and pounding pulse, we get the pain and whatnot, and instead of it being for a few minutes at a time, it's more or less constant. Another viewpoint is that people with ME/CFS have a biological problem that medical science doesn't have a conclusive test or cure for yet. Medical research from the biological viewpoint is ongoing but underfunded - after all, ME isn't a spectacular illness with a high death rate. The other widely held opinion is that people with ME/CFS are making it all up, for fun/attention/time off work. Thankfully this is more rife among the general public than the medical profession.
I do not know which of these theories Dr M subscribes to.
Dr W can confidently feel certain I'm not malingering, because she has known me for many years. How to convince Dr M, who I've known for all of fifteen minutes, that I'm not a workshy scumbag?
Similarly, I know that if Dr W thought my problems were psychiatric, she would have immediately referred me for whatever flavour of psychiatric help she deemed most appropriate. As such, on my original DLA forms, the minor mental health trouble I had were listed as a secondary effect of my illness - in other words, that I got bouts of depression and mood swings because I lost my job/was unable to go out like I used to/got frustrated by my physical limitations/was in a large amount of pain. But what if, this time, Dr M puts it all in as "mental health"? Will they consider my illness to have changed, and would I get into trouble for that?
Or even if Dr M accepts that I'm not making it up and am psychiatrically sound, how do I properly describe the effects my illness has on me without sounding like a whinger? When I'm meeting people, particularly if I don't know them well, I try to be positive and upbeat, try to make a good impression. I'm full of painkillers and if the illness comes up I say things like "the hourly pay sucks but the parking's great" or "meh, it's only a bit of pain, it's not actually going to kill me". What the DLA people need to know about are the bits I don't like people to see - about the pain that is so bad it reduces me to tears, the dizziness that makes me vomit, the lack of dexterity that makes me drop my plate of dinner all over myself and the floor. See, you can hear those violins already. So how do I give a clear picture without giving a bad impression?
Tuesday, February 20, 2007
Error the First
Ladies and gentlemen, may I announce my first form-filling cock-up on page 11 of the 39-page Very Important Form.
Two pages, both alike indignity layout. At the top is a question and tick boxes for Do you have problems with this? Yes/No. Then there's a largish box for "Tell us the problems you have and the help you need" and another one for "Tell us about any equipment you need and if someone helps you use this." Finally there's some small boxes for how often you have these problems/need this help, and for how long each time.
The first page is headed Getting out of bed in the morning and into bed at night. The second one is headed When you are in bed.
I very carefully and neatly started writing about the problems and techniques and equipment I use to get out of bed. I'd painstakingly written about eight lines before I had to stop. I sat with my eyes shut until I felt a bit better, then looked back down at the form and realised I'd written it all on the When you are in bed page.
I may have used interesting language.
Luckily I have plain paper and a pritt-stick which I am assured by the helpline people will be absolutely fine, happens all the time, nothing to worry about. That doesn't stop me feeling like a total wally though.
Tomorrow I'll try and sort it out. Today, I used up most of my energy going to see the doctor. I was quite nervous about this - the GP who's seen me since I was a kid is on maternity leave and the doctor who is covering for her isn't someone I'd seen before.
Doctors can be a bit funny about ME/CFS. I can't completely say I blame them - some people with ME get a bit evangelical about the whole thing, they read every bit of research and see their GPs once a fortnight and chase here there and everywhere following crazy therapies and are convinced they're allergic to The World and campaign for this that and the other to such an extent that one can't help wondering what they might achieve if they put such massive amounts of energy into something other than "illness". The trouble is, this puts people like me, who are less enthusiastically ill, at a bit of a disadvantage. I want a doctor to look at my notes, spot the diagnosis of ME/CFS and think "ah, so she suffers from mental and physical exhaustion, a certain amount of pain, sleep problems, etc," and then listen to me explain why I have come to see them, rather than think "oh god, not one of them. What wacky cure/pseudoscientific research am I going to have to hear about today?"
Luckily I don't tend to see the GP because of the ME/CFS stuff, only for acute illnesses, or at her request ("come back in 3 months for a review"), and I hope this works in my favour as establishing myself as Not A Timewaster. This particular visit was mainly about my ear now that I've completed the course of antibiotics. It's still a bit tender and itchy and, to use the new doctor's technical term after having looked in it, there's quite a bit of "green gunk" in there. Lovely. Ear drops and more pills, and come back to see her in three or four weeks.
She seemed nice, so I braced myself and told her the little worry that has been on my mind - as part of the DLA renewal, there are forms sent to your GP to fill out, which isn't a problem for my regular GP who has known me for ages, but might cause a hiccup for someone who's only ever seen me for six minutes about an ear infection. She smiled and said she'd already had one of those for another patient already, and what she would like to do is, when she gets the form, call me in for a long appointment to go through it and dig up any information that isn't readily available in my notes. So there's another big sigh of relief.
In other news, I've broken my kitchen. One of the drawers (the cutlery drawer to be precise) has come apart, not badly or irreparably, but the side pieces of chipboard that had been glued together are no longer together. Suggestions about the best product to fix it with are welcome.
Two pages, both alike in
The first page is headed Getting out of bed in the morning and into bed at night. The second one is headed When you are in bed.
I very carefully and neatly started writing about the problems and techniques and equipment I use to get out of bed. I'd painstakingly written about eight lines before I had to stop. I sat with my eyes shut until I felt a bit better, then looked back down at the form and realised I'd written it all on the When you are in bed page.
I may have used interesting language.
Luckily I have plain paper and a pritt-stick which I am assured by the helpline people will be absolutely fine, happens all the time, nothing to worry about. That doesn't stop me feeling like a total wally though.
Tomorrow I'll try and sort it out. Today, I used up most of my energy going to see the doctor. I was quite nervous about this - the GP who's seen me since I was a kid is on maternity leave and the doctor who is covering for her isn't someone I'd seen before.
Doctors can be a bit funny about ME/CFS. I can't completely say I blame them - some people with ME get a bit evangelical about the whole thing, they read every bit of research and see their GPs once a fortnight and chase here there and everywhere following crazy therapies and are convinced they're allergic to The World and campaign for this that and the other to such an extent that one can't help wondering what they might achieve if they put such massive amounts of energy into something other than "illness". The trouble is, this puts people like me, who are less enthusiastically ill, at a bit of a disadvantage. I want a doctor to look at my notes, spot the diagnosis of ME/CFS and think "ah, so she suffers from mental and physical exhaustion, a certain amount of pain, sleep problems, etc," and then listen to me explain why I have come to see them, rather than think "oh god, not one of them. What wacky cure/pseudoscientific research am I going to have to hear about today?"
Luckily I don't tend to see the GP because of the ME/CFS stuff, only for acute illnesses, or at her request ("come back in 3 months for a review"), and I hope this works in my favour as establishing myself as Not A Timewaster. This particular visit was mainly about my ear now that I've completed the course of antibiotics. It's still a bit tender and itchy and, to use the new doctor's technical term after having looked in it, there's quite a bit of "green gunk" in there. Lovely. Ear drops and more pills, and come back to see her in three or four weeks.
She seemed nice, so I braced myself and told her the little worry that has been on my mind - as part of the DLA renewal, there are forms sent to your GP to fill out, which isn't a problem for my regular GP who has known me for ages, but might cause a hiccup for someone who's only ever seen me for six minutes about an ear infection. She smiled and said she'd already had one of those for another patient already, and what she would like to do is, when she gets the form, call me in for a long appointment to go through it and dig up any information that isn't readily available in my notes. So there's another big sigh of relief.
In other news, I've broken my kitchen. One of the drawers (the cutlery drawer to be precise) has come apart, not badly or irreparably, but the side pieces of chipboard that had been glued together are no longer together. Suggestions about the best product to fix it with are welcome.
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