Flash Says…

Archive for March 2011

Nobody ever feels like they have enough – but even when you spend half the day in bed, it still isn’t enough for me.

I’ve always needed a good ten hours of sleep, but that’s grown lately as pain interrupts my slumber and stops me getting a good run of deep, good quality, sleep. Now, I spend 12-14 hours with my eyes closed, either dreaming or hoping to be.

It’s not 14 hours of blissful sleep – the last 3 or 4 hours are spent dozing in pain, even dreaming about it. From the moment I lie down, my lower back is conspiring against me. When I wake in the small hours, the pain is bearable, but by the time my husband and dog wake at 6.45am it hurts to move, so much that I have to hold the bed frame and lift myself between positions, rather than daring to roll from one side to another.

Other people just don’t get it. When I hand my phone number to people I ask them to note “afternoons only” next to it. The response is usually envy “Lucky you, I’d love to be in bed for that long!” – missing the point that only I’m in bed because I need the extra sleep. I can’t function without it. I certainly struggle to get out of bed any sooner.

My friend Anne lives with a sleep disorder, so she knows how I feel. “Basically I am sick of people saying they wish they could sleep anytime (er, no they don’t). I think people don’t understand because it’s a more extreme form of something that affects us all – just as people don’t get that depression isn’t just feeling a bit sad, they don’t get that sleep disorders aren’t just being a bit tired, and I can’t just try a bit harder to get up.”

Needing so much shut-eye is a real inconvenience. Because I’m only up for 10 hours, I have limited ability to work. I certainly couldn’t fit in an 8 hour day. Like everyone else I need time to eat, and to relax – and what about commuting time? Even being self-employed and working from home, the shift in working hours is unhelpful. By the time I start work, I only have three hours before the clients I’m chasing will clock off.

Anne’s situation is more difficult: “I spend mornings in a fog. I don’t want my workmates to know because I don’t want them to question my capability, or think I’m lying when I say the train was late. People do think it’s funny, and it’s hard to explain that it’s not. I sleep a lot at weekends to catch up…”

I can sleep through all sorts. Doctors’ appointments, meetings with friends…. alarms, the dog barking, the doorbell… I have to arrange that I will only meet up with people if I’ve already sent them a message to say that I’m awake. Otherwise, I’m dead to the world while they are patiently waiting in a cafe. Sounds amusing, but it’s frustrating to have to plan.

Of course I use alarms! I do want to get up, and I try to. This morning the first alarm went off at 10.15 – I have a vague memory of fumbling with my phone until it stopped sounding. The second alarm followed at 10.35, and I turned my bedside light and radio on in the hope of staying awake. No joy, because when the final reminder sounded at 10.55 it was all I could do to wake enough to turn it off. From there I dozed for two hours, through hazy memories of Queen, Elbow, an interview with the Pet Shop Boys, and news about bombing Libya. Frequently, the pain grew, and I hauled myself over to lie on my other side for a while, my body needing to get up but my brain refusing to wake.

Eventually, the thoughts became less hazy and more realistic – when I realise I’ve started planning some gardening in a coherent manner, it’s time to get up. I sit up, and discover that I’ve missed a call from my father which I really wanted to take, and it’s already 1pm. Yet again, I’m starting the day on the back foot.

I love the few hours a day when I really feel alive – but I can’t help thinking that this is how I used to feel all day, every day… I really need to function fully for more than a couple of hours, because I’m having to choose between activities – grocery shopping? Exercise? Or work?

So next time the alarm sounds and you groan at the thought of starting another day, think of me, and all the other people who would like nothing more than to be able to join you in it.


[This article was published at Where’s the Benefit, where I am one of the team.]

Beryl is a woman in her 50s, who has worked all her life and feels she’s always done an honest life’s work. She works as a piano tuner – a very physical job, but one she loves and had every intention of continuing until retirement. That is, until she fell ill, in May 2010. At that point, she hoped that the system would provide for her…

Beryl went to A&E in May 2010 barely able to breathe and was told she had dry pleurisy and a collapsed lung. She struggled for every step, fighting to put one foot in front of the other, as she could barely get enough oxygen into her body. Yet when she applied for ESA and attended a medical in this state, she was passed fit for work. The Atos doctor did not even notice that Beryl was presenting with a collapsed lung.

Not being awarded a benefit to which she was entitled, while clearly unable to work, put Beryl into a difficult situation. From having been able to afford what she needed, Beryl had to adjust, juggling household money in order to keep her business afloat, paying bills for things such as a Yellow Pages advert taken out in good faith, but with several months yet to pay.

“It’s not the money,” she told me, “it’s that they don’t believe you. Every time you speak to people on the phone they say ‘I’m sorry to bother you, I can hear that you’re ill’ but the powers that be have decided that I’m fit to work.”

Beryl appealed. She wrote to her MP, and sent a bundle of supporting evidence to the Job Centre, including letters from her GP and her consultant stating that she could barely walk or breathe, and that it would be at least a year before Beryl could hope to have recovered, if indeed she would recover at all. The appeal was heard in December 2010. However, they did not consider any of the new evidence – it was a mere rubberstamp exercise, to confirm the original decision. Although Beryl was too weak to leave the house, now relying on neighbours to bring food and help her to manage, the Job Centre decided she was fit and able to return to work.

Fortunately, Beryl was awarded Disability Living Allowance and a Blue Badge which has helped her to some extent; she won these on the same evidence presented for her ESA application. She has also applied for a tribunal for her ESA, which means that she has to be paid until the tribunal is heard, but she will still have to go through the stress of a hearing to prove entitlement, something Beryl is dreading.

The MP has written asking the Department of Work and Pensions to investigate, and for a copy of their files, but has had no reply.

Beryl is still very unwell. Although she now has a diagnosis, there are no guarantees as to what level her health can be restored – she may be disabled for the rest of her life, and will certainly remain seriously ill for the near future. However, she is still being chased by the Job Centre, because as far as they’re concerned there’s nothing wrong with her.

A lovely lady works all her life, builds up a successful business, pays her taxes – and then the system lets her down when she needs it most. Ten months from when she fell ill Beryl still hasn’t been awarded ESA, but as she can barely manage to make a cup of tea she certainly couldn’t return to work. This is the system we trust to support us when we need it most. The system, quite frankly, is screwed.

Need a wheelchair? They don’t grow on trees, and they don’t magically appear, attached to the derriere of whoever needs them. So how do you get one, and who pays?

The first thing to consider is that progression towards needing a wheelchair can be a gradual process. Some people will always need one, others only occasionally, and some people just use a wheelchair when recovering from injury or during late pregnancy.

If you need a wheelchair for a short period, – there are two options for hire in the UK. Your local Red Cross branch will lend out rather heavy manual chairs (known as “tanks”) for a few weeks, giving you a choice of transit (with four small wheels, which someone else will push) or self-propel (with two large wheels, which you can push yourself, or someone else can push). You’ll also be able to hire powered wheelchairs and mobility scooters from Shopmobility, who are usually based in shopping centres, and often only loan chairs by the day. Some regions may have additional projects, but generally Red Cross and Shopmobility are the only UK-wide schemes to which you can self-refer.

People with a permanent or long term need can obtain a chair from the NHS’s Wheelchair service, administered by your own region (so rules may vary across the UK). It’s a long process, beginning with a referral from your GP, and although you may have a “free” wheelchair at the end of it, the provided chair may not meet your needs.

My local service divides users into categories – those who need a wheelchair occasionally, those who need one nearly all the time but can walk a little, and those who cannot walk at all. If you fall into the first category you will be given a fairly generic and heavy chair. Those who need a chair a lot of the time outside the house but can walk a little – like me – will get a “lightweight” chair. Don’t be taken in by the name – mine weighed 14 kilos and I struggled to lift it in and out of the car. And those who are reliant on their chair at all times will be classified as an “active user” and can have a lighter, sportier chair.

Manual wheelchairSo far, I’ve been talking about the issue of manual wheelchairs. This is because to qualify for a powered chair there are very strict requirements; generally you must be unable to take a single step, and need to use the chair inside the house as well as outside. Since my house has a narrow doorway, there is no way I could use a chair inside even if I wanted to. Therefore, I will never be provided with a powered chair, no matter how bad my walking (or pushing ability) becomes.

I had a lightweight manual wheelchair for a couple of years. Over that time it wore out through use, until eventually the seat slid forward and back as I moved along. A succession of repairmen said that because I was such an active user I should have a better chair, but because I can walk a bit, I don’t qualify. The only way to be provided with a chair durable enough for my needs and light enough that I could put it into the car with ease is to get the NHS to fund up to the limit of my normal chair, and make up the difference myself to fund the chair I need. This is called the Voucher Scheme – where the NHS will give you the value of the chair that they would have bought for you, and then you top it up to buy the chair that actually meets your needs. In my case, this means forking out £1000 to buy the chair that the advisor at the Wheelchair Clinic says I should have, as opposed to the one they would pay for.

Even so, having agreed to make up the difference myself, I have to wait 3 months for my chair. Wheelchair Services have a limited budget and it can take several months before they can sign off on mine. This is also something I experienced back in 2007 when I had no working wheelchair – no matter how urgent your need, you’ll have to contend with a budget which is stretched to its limit.

Other friends, who have accepted the basic chairs they were offered, have resorted to expensive add-ons such as E-Motion Wheels which make it easier to self-propel the chair.

There is another option which can provide a powered wheelchair (not a manual one) – the Motability Scheme. This is the same scheme by which disabled people can obtain cars or mobility scooters, and it’s funded by the user’s Disability Living Allowance. The disabled person hands over the mobility component of their DLA benefit – around £50 per week – in return for one of the selection of models provided by the scheme. So the disabled person is parting with over £2500 per year in order to receive a wheelchair – it’s certainly not free! The cost and limitation of this scheme is why many people prefer to use the NHS Wheelchair Service.

My friend Imogen has a different problem. She is severely mobility impaired, unable to walk or to move without being hoisted, so she depends entirely on her wheelchair for mobility. You’d think this would mean she qualified for the best chair for her needs, since it’s essential to her life – when she’s not in bed, she’ll be in her wheelchair.

Two wheelchair usersInitially, her local wheelchair service was unable to help. Although she was only a size 18, they told her she was so fat that they couldn’t provide a chair that would fit through standard doorways! She’s been back to Wheelchair Services several times as her impairment progressed and her needs increased, but they were only able to offer basic models which she could not use. In the end, she ended up taking out a loan so she could buy a chair that met her requirements. However, as her disability meant she was unable to work, Imogen knew that she’d spend years repaying the cost of her wheelchair. Ultimately, it bankrupted her.

If she’d been a child, Imogen would have been eligible for support by various charities, most notably Whizz-Kidz – but once you’re an adult, assistance from alternative funding is very limited and unlikely to happen.

Nowadays, Imogen’s very specialised needs mean that the right chair for her costs £10,000 new, but that’s a cost the NHS isn’t prepared to pay. When her old chair fell into disrepair they offered her a simpler model, but this would have meant significant changes to her lifestyle – not being able to mount the steep ramp into a taxi, not being able to negotiate some of the slopes at university – that she wasn’t prepared to accept. Instead, Imogen was offered a voucher for £4500 which left her with a dilemma: it would be cheaper to buy a second hand wheelchair than to top up the voucher to cover the cost of a new one. Yet there are no guarantees with a second hand chair (and for that reason, the NHS won’t allow vouchers to be used in that way, even though it can be the only way for many people to afford the chair they need). So, either way, Imogen has been forced to resort to yet another loan in order to remain mobile.

It may come as a shock to learn that even someone with severe medical conditions and no means of working may have to find some way to fund the wheelchair they need – the only alternative is being stuck in bed. After rent and food, getting around is the next consideration in a mobility-impaired person’s budget checklist, and in many cases that means forking out for wheels.

So there you have it: wheelchairs don’t grow on trees, they don’t magically appear, and unless you are very lucky or can manage with a basic model, they certainly aren’t free.

Flash Says – a regular blog by Flash Bristow

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