Tuesday, November 30, 2010

Keeping Warm

I just got my blog stats and found that a lot of people have been turning up here looking for information about help with heating bills.

So, I thought I'd do a recap with information and useful links double-checked for 2010.

There are two types of help with winter heating. One is the Winter Fuel Allowance, the other is the Cold Weather Payment.

The Winter Fuel Allowance is a one-off tax free payment of between £250 and £400 per household. It is paid to everybody over the age of 60 who is normally resident in the UK. It is not means-tested and payment is automatic (Peter Stringfellow got some cheap headlines by offering to give his back). Recipients don't even have to be living in the UK during the winter - it will still be paid automatically even if the recipient is a millionaire who decides to go on an extended holiday in warmer climes for the next few months.

Winter Fuel Allowance is NOT paid to anybody under the age of 60 in any circumstances.

The Cold Weather Payment is a bit more complicated. It is a payment of £25 paid out to eligible people if there is a "period of very cold weather", which is defined as when the local temperature is recorded as below 0 degrees Celsius for seven consecutive days.

If there are six days where the temperature is below freezing, and then one day where it creeps up to one or two degrees above, and then another six days of freezing - no payment will be made. People do not need extra heating in this circumstance as this is not considered by the government to be a period of very cold weather.

You can find out whether the government thinks your local weather has been Very Cold by using this handy DirectGov tool. Just type in your postcode and then click on the orange "Submit" button that is down and to the right.

My postcode is deemed to have had one period of Very Cold Weather during November. However I'm not eligible for any payment. You see, eligibility is rather more complicated as well.

The over-60s on pension credit get it, on top of their Winter Fuel Allowance. From there on in, it's breadline only. People on Income Support or Income-based Jobseeker's Allowance may be eligible if they also have a disability or pension premium, a disabled child, or a child under five years old. It is also available to most disabled people on Income-based Employment Support Allowance.

It is NOT paid to people on contributions-based benefits, nor is it paid to people on benefits like Disability Living Allowance or Working Tax Credits of any kind, unless they are also on those named income-based benefits and they meet the additional conditions described above.

Both types of payment are automatic - if you are eligible for it, it will be paid. The unfortunate news is that unless you're over 60, you're probably not eligible for anything.

Monday, November 29, 2010


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?
How are you generally?
Same as usual, nothing new to report.
Nothing you need to raise?
*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.

Monday, November 22, 2010

Cllr Simon Button

I've been meaning to post this for a while but I kept looking at it hoping I'd imagined it. This is a scan of the front-page article of a local town council newsletter. It's the "winter 2010" issue and was delivered in mid-November.

town councillor Simon Button

The article complains that nobody has come forward to help Cllr Button to organise a local Fun Day. In many ways it's like every other self-important council newsletter you ever read. The bit that stands out, though, is the second paragraph on the second column, reproduced here verbatim:

"It is very sad these days that the old Winston Churchill philosophy still stands - "So much is owed by so many to so few". It seems that everybody wants these events, but nobody is prepared to help out. How sad!"

Yes, Councillor Simon Button draws a parallel between the organising of a tiny local "Fun Day" which entertains a few people for an afternoon and raises a small amount of cash for local charities... and the ultimate sacrifice made by thousands of soldiers in WWII as they fought, with their lives, to save not just the UK but the whole of Europe from the Nazi regime.

I'm not big on the politics of war but even I'd consider that kind of comparison both inappropriate and grossly offensive, especially when written for publication by a town council and even more especially when aired in November, at a time when the nation honours those who died.

Thursday, November 18, 2010

The Wedding Of The Year

Please don't hate me for bringing up the Prince William/Kate Middleton/engagement thing. Yes, I know, it's already hideously overexposed. Yes, I know, you're sick of hearing about it. I'm sorry.

If it helps, this post isn't about them as such. If I wasn't in the middle of wedding planning myself, then the entirety of my response to the news of their engagement would consist of "oh, that's nice for them," and wouldn't warrant a tweet let alone a blog post.

However I have been nurturing a Bridal Brain since February, so my initial response was "oh, that's nice for them... hang on! Spring or Summer 2011?!? AIEEAAAAGH!!!" Ever since the drive home from Wales back in February, Steve and I have been planning for Spring/Summer 2011 (we've settled on a date in May) and now I am having irrational fears of our wedding being upstaged, sidelined, downplayed, faded out and all sorts of other directional diminishment.

A couple of times I very nearly tweeted "if they steal our date, I'll bloody well kill them," but recent events mean that even though I would only mean this in the figurative sense, and even though it should be apparent that someone with my physical attributes poses very little threat to a healthy Forces-trained male even without a constant bodyguard presence, it would still be a bloody stupid thing to say. So instead I went with "If they pick our wedding date, I'll... I'll... I'll be quite annoyed #IAmNotBraveEnoughToBeSpartacus" and felt like an enormous coward.

I mean, it's bad enough to end up sharing your wedding day with a major sporting event (Wimbledon, World Cup, Test Match Cricket, whatever) that your guests are going to be sneakily trying to keep track of. To clash with the hype of a major royal wedding... it doesn't bear thinking about!

The biggest problem is that, for obvious reasons, I have to spend a lot of time resting, and if I can't sleep, I tend to daydream, and my daydreams aren't always kind to me. This opened my brain to the horrific possibility that if they get married in, say, March, and they have, for the sake of argument, a pirate theme to entertain the kids who are attending, then when people come to our wedding in May and see all the pirate party bags and whatnot, then even though we bought that stuff in summer 2010, it'll look like we're trying to emulate them. Same goes for music, readings, colour schemes, dress style... it's unlikely they're going to have anything like what we've chosen, as they'll be restrained by a lot of protocol, but what if? What if our carefully planned and very personal wedding just looks like a poor imitation of the most highly publicised marriage so far this century?

I know this is irrational! I know that even if they want pirates, they won't be allowed pirates! I know none of our guests will be making comparisons! But Bridal Brain is not conducive to sane, rational thought!




I'll understand if anyone wants to just come back in June.

Saturday, November 13, 2010

Back to work

No, not me, but Steve. We had a lovely summer together, but we also have a wedding to pay for, so after his much-needed break poor Evilstevie has trudged back to the coalface of the IT industry to earn us some beans.

It's a bit of a shock to the system, but it's also kind of nice to be settling back into the work-day routines again. I have resumed my wifely task of making him a nice packed lunch every day. "Making" is stretching the point a little as it consists of making some kind of sandwich, putting it in a box, and then adding little pre-packed snacks of varying unhealthiness (from fruit cereal bars to bacon frazzles) until the box is full. But it's something I enjoy doing, and it's something he enjoys eating, and it also gets me points with my future-mother-in-law because while Jamie Oliver would probably scream with disgust, at least it means Steve eats something during the day.

Once Steve and his snacks have gone to work, I've got the house to myself for the day, which is taking some getting used to. Obviously I've been working all along so it's not like we've been spending every waking moment together, but I'd got quite used to the way that every couple of hours one of us would decide to make a cuppa and say hello while we were at it. I'm certainly drinking less tea without him here.

The other thing I'm trying to do (although so far I've only managed it two days out of five) is to try and play on the Wii a bit each day, in the name of moving about properly and maybe even trying to get a bit of weight off pre-wedding. My favourite game for this is Just Dance, which differs from most dance games in that instead of demanding intricate footwork on a floor pad, which would see me flat on my face within about fifteen seconds, it's big movements with your arms and body - you can play it standing still, or sitting down, or on one leg or jumping about the place if that's your thing. There's also a nice warm-up session on it, which I can't manage all of, but I do my best and at least it means I've stretched a bit. Pre-disability I really enjoyed dancing, so this is good fun and the music makes it easier than doing physio in silence.

If anyone else can recommend any good Wii games that move more than just one arm, don't require good balance, and have varying levels of physical impact, please leave a comment. I wouldn't have even known about Just Dance until I happened to hear another crip mention it. I'm a little bit limited on space - 160cm between the TV and the sofa, which isn't enough for me to lie down full length - but beyond that I'm open to suggestions.

Saturday, November 06, 2010

Proud of the BBC

I know I've mostly been talking about the welfare aspect of the planned cuts going on. That's because I believe that it's important for people to have the absolute basics of life - a safe place to sleep, food to eat, warm clothes to wear, necessary medical attention, the ability to develop and maintain social contact with other human beings - over and above everything else. Arts and culture is important, certainly, but I don't believe anyone could stand in front of a disabled person and say "I'm sorry you're having to choose between having your heating on and buying food this winter, but we're sure you'll feel better for knowing that the money we're saving on your benefits means that the massive art gallery down the road can stay open. And keep their heating on. You could go there every day to keep warm! Well, you could if we hadn't cut the accessible transport service..."

And the BBC has its failings. Extreme health and safety. Multiple layers of bureaucracy. Their persistent habit of sending threatening letters to houses with no television sets demanding that the licence fee be paid.

Nevertheless, I'm proud of the BBC and agree with every sentiment in this wonderful song:

I do watch TV, and I pay the licence fee, and I'm okay with that. I don't always watch BBC channels but many of the programs I like were originally developed for/by the Beeb and have been bought for repeat by other channels. I also listen to the radio/podcasts, I participate on a couple of messageboards, and I adore the BBC news website. During the Chilean miners' rescue, for instance, the BBC was a definitive source of information. It was clearly laid out, well-presented, low on sensationalism, high on commitment. The feed and the articles were being echoed around international forums as being superior to the coverage offered by other news outlets. The BBC has a lot to be proud of and in turn we can be proud of the BBC!

Mitch Benn's Proud of the BBC is available via many download sites listed here.