So you’ve lost your Motability Car – what next?

So you’ve lost your Motability Car – what next?

Disabled Driver Motability Scheme

One of the greatest fears currently facing people on Disability Living Allowance (DLA) is when they will be reassessed for Personal Independence Payments (PIP), and whether they will still be deemed eligible for the benefit. The current timescales for reassessment is that anyone receiving DLA whose claim is coming up for renewal will be reassessed at that time, and those who have previously received an indefinite DLA award will start to be reassessed from October 2015.

Many people who have the High Rate Mobility element of DLA will have swapped their benefit payment to receive a car on the Motabilty scheme instead. The whole point of the Motability Scheme was that it was recognised that the cost of buying a decent and reliable car that met the needs of the disabled person was going to be prohibitive in cost.

My first Motability car was a Ford Focus, but not long after I’d had it I was assessed as needing a new electric wheelchair, and unfortunately no matter which chair I’d gone for, it wasn’t going to fit into the car.  So Motability allowed me to change my car earlier than the normal three year lease. The most important feature I was looking for in a new car was a high boot to accommodate the height of the hoist to get the wheelchair in and out, and also have room for the chair itself.

In an ideal world I would have been looking for a small car – such as a Ford Fiesta (I do really like Fords, but any car around that size) in a bright blue, but the large boot thing crossed those off the list, and mostly left huge van-like cars and seven seaters, and when I was looking they all seemed to come in dull colours.  I’m going to be honest and say I didn’t want to be driving such a big car, particularly a big box of a van, or a seven seater. And yeah, maybe I’m being picky, but I am in my 20s without six children, and I’d feel silly driving such a big car.

So, I went out searching for a car that fit what I needed, and with a tiny, tiny dash of what I wanted (as small as possible while still fitting the chair). I went to 17 dealerships in my town and, measured a lot of boots. Funnily enough I ended up back at the Ford dealership – looking at the Ford C-Max which is actually based on the Ford Focus, but is taller. It had other benefits as well, it was generally higher – which really helped with getting in and out of it. It has keyless entry, which to me is such a lifesaver. I often have wrist flare ups which makes it difficult to turn a key, but also when you’ve put your wheelchair away, and are using sticks to get in the car, it saves valuable time of searching through your bag looking for the keys, when every additional second on your feet is incredibly painful.  Similarly when I reach the car, I’m drained and again it’s so handy to just worry about getting in, than trying to unlock everything.

Motability also offer a means-tested grant scheme. Usually if you pick a bigger car, it has a larger advance payment – and they expect you to cover it, as you chose it.  However the reason I needed a bigger car was for documented disability-related reasons, so I was eligible for the grant.

Having the car allows me to leave my home on good days.  I’m not always driving, in fact the vast majority of the time someone else drives me, but my wheelchair can’t be lifted without a pretty heavy-duty hoist, so isn’t possible to go into another car.  I also can’t use a bus (for lots of different reasons too numerous to mention), and the wheelchair accessible taxis are few and far between, charge a lot more (despite being illegal), need booking days in advance and often don’t turn up and so leave you stranded.

I see my car as an extension of my mobility aid.  It’s a place I store things helpful to my condition; it has seats I can cover in cushions and blankets so I can sleep on the journey and have less pain; it has a seat I can recline back so pressure is taken off my spine; it has additional medications hidden away just in case and if I’m out for a longer day, it’s a place I can return to in order to rest/sleep to help me get through it.

Without my car I’d be trapped at home, so the thought of losing my Mobility Element when I transfer to PIP is a constant worry.  Now, you might think those who are genuine have nothing to fear – but this, sadly, is not the case.  Look at all the regular articles in the press about people who have been told they’re perfectly healthy and had their benefits removed, and yet just looking at the conditions or health issues they have shown they’re obviously entitled to the benefit. The high rate of appeals that overturn the decision made by the Department of Work and Pension’s also show things are regularly going wrong.

However, the real fear is that the government have declared their intentions.  We know that the fraud and error rate of Disability Living Allowance is just 0.5%, and yet the government have declared that 42% of working-age people will no longer be eligible for the Motability scheme under the new system.  They are therefore admitting in perfectly plain language that they are targeting legitimate claimants, and removing them from the scheme. Of course some of the rules have also changed, particularly of concern is the distance someone can walk.  Under DLA it was 50m, but it has now reduced to 20m.  This will have a huge impact on people with painful conditions that may simply vary depending on the day. 20m is not far at all – it’s often less than the walk into a shop, or from a parking spot to someone’s front door. This will of course mean many people will no longer be able to work, or go to their local hospital or GP, let alone do normal day-to-day activities like shopping or visiting a friend.

I know so many people like me are living with this fear that I wanted to look at some of the possible alternatives and solutions if someone does not receive the new PIP Enhanced Mobility. These suggestions won’t suit everyone, but may provide a little bit of comfort that there is some help available at least.

First of all if you do find yourself in a position of no longer being assessed as eligible to receive PIP and you have a Motability car, you will continue to receive your DLA payments for four weeks, and you will also be able to retain your vehicle for another three weeks from the date of payments stop – so this gives you around two months to try and find an alternative. You will also be given the option of purchasing your vehicle, and can use these three weeks of payments towards the cost of this.

The government has also announced a payment will be made to people in this position to help with sourcing alternative transportation. For those of us that joined the scheme before January 2013, and therefore were unaware of the impending risk of PIP, will receive £2000. For those who joined after this time will receive £1000.

For customers with wheelchair accessible vehicles (WAVs) Motability may be able to help the customer keep their current vehicle depending on their circumstances, and for those with adapted cars they will pay for the adaptations to be made to a non-scheme vehicle.

It’s well worth knowing this information, as in my experience with similar promises, it may only be offered if you ask for it.

Another option is to privately purchase or lease a car from an independent organisation such as Allied Mobility. They offer both a lease option, and sell adapted cars and WAVs that were previously on the Motability scheme.  A company like this will be used to dealing with disabled customers, to may be able to offer more assistance with the transfer between cars.

So there is a little bit of help out there, and some alternatives. I’m not saying it’s going to be easy, and I hope that anyone reading this will not be impacted by the changes, or can find an alternative that meets your needs.

Do you have any suggestions you’d like to add?  Please comment below.

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Stretching Disability Living Allowance to its Limit

Stretching Disability Living Allowance to its Limit

Yesterday I had an assessment by Social Services for Direct Payments.  I’d been waiting about seven months for it after being assessed as ‘Urgent’.  The Social Worker was fine – we talked through my condition, how it impacts me, the average day and what help I need.

What I did find interesting during the assessment is that after I was asked to give an overall idea of the help I’d ideally like – she then gave me a list of everything that my Disability Living Allowance was expected to cover, and so Social Services would not.  From my list this included all cleaning, gardening, treatments not covered by the NHS, help with pets, and any activities even if they related to quality of life/better health and more.

As an aside, while I was aware of the cleaning issue, I am appalled that Social Services won’t help people with disabilities with cleaning at all.  It’s not a cheap service to have, and I find it totally impossible to do such physical tasks as hovering, dusting, clothes washing, changing the bed sheets – and there’s people a lot worse than me out there.  So they’ll pay to get you out of bed, and showered – then leave you in squalor to fend for yourselves?

But, back to my main point, I thought it was interesting how far she expected DLA to stretch.  I currently use my DLA for an adapted car that has a hoist for my wheelchair.  Without this, I couldn’t leave the house – as my wheelchair won’t go on buses, and wheelchair-adapted taxis are a rare sight to behold in my town (and usually double the price).   Other people will often use this payment to hire a wheelchair from Mutability, or on taxis to get out and about.

Out of the rest of my DLA I and many others pay for things like extra heating, carers, mobility aids, therapeutic devices, special clothing/shoes, food that’s easier to cook (pre-prepared), the higher rents of accessible accommodation, medications, supplements, extra washing loads, specialist exercise programmes, special cushions, adapted items, insurance for wheelchair/scooter, petrol for additional car journeys (doctors/hospitals/travel to specialists often miles away, physiotherapists, other therapists, assessments as well as journeys most people would walk – but you have to drive instead) and so much more.

Of course people with disabilities are statistically more likely to be on a lower-income than the average person, even when able to work.  So DLA may also help towards rent, bills and normal day-to-day living costs.

When I was trying to obtain an electric wheelchair through the NHS, as I am physically unable to manually propel – I explained I was using my Mobility Payments on a car that I needed to get to work.  The assessors response was that I should be using it on a wheelchair.  I pointed out that if I used it on a wheelchair and gave up my car, the wheelchair would have to live in the garden – and I would have to live on the sofa, as the car was vital in transporting the wheelchair, so what would be the point of that?  She had no answer.  It seemed it was their policy to be telling people to spend the DLA on wheelchairs too.

But it doesn’t cover a fraction of the extra costs I have for being disabled, and while I totally understand there isn’t a limitless supply of funds – it doesn’t help when agencies are putting more and more strain onto the benefit.  Exactly how far do they expect DLA to go?

wheelchair push

The Dreaded Brown Envelope – ESA News

The Dreaded Brown Envelope – ESA News

This year my health has gone downhill somewhat.  I suppose it has been doing that for some time, but when I finished my previous job I just knew I couldn’t do it anymore.  I was a total mess, and my list of needs and adjustments from a job was getting longer than the job description itself.

In April I applied for Employment and Support Allowance for the first time.  For those of you that don’t know much about it, it’s the benefit that replaced Incapacity Benefit – for disabled people who can no longer work.

There are three rates – the Assessment Rate, the Work Related Activity Group (WRAG) and the Support Group.  If placed in the WRAG they admit you’re too ill to work currently, but feel you should be able to work with support in the future.  People in this group have to attend regular work-related meetings with companies who receive bonuses if they can get you into work; can be forced into unlimited work-placements and can even sanction you.  So in one breath they admit people in this group cannot work, and then force them too – and stop their benefits if they refuse.  The Support Group means they feel you cannot work, and do not expect you to anytime soon.

The way the system is supposed to work is that you receive the assessment rate for 13 weeks, then either a decision maker at the Department of Work and Pensions (DWP) decides if you should go in a group or be found ‘fit for work.’  If they feel they don’t have enough information they can send you for a medical with ATOS.  The assessment rate is lasting much longer than 13 weeks, however, which is probably because a large amount of people are being sent for the medicals despite copious medical evidence with their applications that should give the decision maker enough information to decide.

The medical tests themselves are highly controversial as it’s been shown those carrying them out are under a lot of pressure to find the person fit for work.  The tests are extremely limited in scope, and most people are indeed found fit for work and then have to appeal it.  In most cases this decision is overturned at tribunal level – showing the system is flawed.   The whole process causes a lot of stress to the claimant and this horror vastly increased in October when they decided that if you were found fit for work and appealed, you’d no longer be paid the assessment rate while you waited for the tribunal – which can take up to a year to happen.  The benefit starts at £56.80 a week for under 25s, and £71.70 for over 25s.  This amount is what people have to live on, and removing it is beyond cruel.

In July I was told I would be having a medical.  While expecting this, I was still annoyed as my claim included excellent medical evidence.  My GP had written a long letter, as well as my Occupational Therapist. I also had a pile of letters from my consultants including the top specialist in Ehlers-Danlos Syndrome in Britain.

But I heard nothing for six months.  When October passed my worry increased dramatically.  I wondered what would happen if I was found fit for work and had no income while I appealed.  I fretted about how I’d pay the rent for the accessible bungalow I live in, or pay for the treatment the NHS won’t cover.

I’ve also been through all this before with Disability Living Allowance and it wasn’t a very fun time.  I pretty much had a mini-break down and had to go through two tribunals.  You can read about that starting here  and follow the whole saga under the tag ‘benefit claim’.

Having had bad news so often before, and living in constant fear of bad news from the DWP  – I have a certain reaction every time I spot their distinctive letter I call the ‘dreaded brown envelope.’

I’m a little superstitious, even though I know it’s silly.  I say the rhyme when I see a lone magpie, I throw spilt salt over my shoulder and I make a wish when the numbers on a clock are all the same.  I’d been lying awake for some hours trying to sleep (not uncommon) when I spotted it was 2:22am.  I made a wish.  “Please.  Please just let me know either way before Christmas.”

The next morning I was hobbling past the front door when it caught my eye.  The dreaded brown envelope.  My heart began to thump and my breath caught in my throat.  I opened it quickly, and tried to make sense of it.  Two words stood out to me – Support Group.

Relief flared through me, but as I read further it stated that I’d been placed in the Support Group from July – 30th November.

When you get put in a group a time of claim goes along with it, and I was aware that people have been placed in a group before and thought they were okay, only to find out that by the time they’d been told which group they were in, their claim had finished.  Was that what had happened to me?

I immediately phoned the DWP and spoke to a nice lady who looked my claim up, and agreed that the letters were confusing, but those dates were referring to back pay.  They agreed I should have gone into the Support Group from July, and up until November 30th had been on the assessment rate.  So I’d get back pay up of the difference between the Assessment Rate and Support Group Rate until that date.  Then from the 30th November my claim will run for two years.

I began to cry – and apologised to the poor woman.  I explained I was just so relieved.  She responded kindly by saying I didn’t have to worry about any medicals, or sending anymore sick notes.

I honestly can’t believe I got put into the Support Group first time and didn’t have to go through a medical.  It seems incredibly rare with ESA not to have a medical, and even more so to be put straight into the Support Group.

I can’t even begin to put into words what this means to me.  It should mean some financial stability during this time – until the Personal Independence Payments rollout.

Credit to: Cieleke

Credit to: Cieleke

Victory against bedroom tax by person with disability

Victory against bedroom tax by person with disability

A person with a disability has won a case against housing benefits officials when a judge ruled that a reduction of her housing benefit breached her human rights.  It was agreed that she does require a separate room from her husband due to the her MS and the adaptations she required.

This has positive implications for all of those with a disability impacted by the tax.  Currently disabled people make up 63% of all those receiving a reduction in their housing benefit due to having a ‘spare bedroom’.

In fact the bedroom is rarely spare – it’s often used to store medical equipment, been adapted for a specific purpose, used for those who can’t sleep in the same room as someone else due to their condition, or for someone who requires a carer – but not every night.

The worst part of the new scheme penalising so many people is there isn’t a choice in the matter.  One and two bedroom properties simply aren’t available, let alone houses that are suitably adapted.  Often the person with a disability or the council have spent thousands of pounds on putting the right adaptations in place, sometimes even building an extension if the property wasn’t large enough to meet their needs.  It’s then a cruel irony the room provided to make life easier for them ends up reducing their already inadequate benefits.

The Papworth Trust have reported that disabled people being hit by the tax are being forced to cut back essentials such as food and other bills, and they state this “will also have a longer term impact on the NHS and social services.”

While Labour have now promised to scrap the bedroom tax if they get into power, this cruel policy should be halted immediately to stop penalising the 420,000 disabled people impacted by this policy, and further 240,000 people on a low-income.

Credit to Jason Morrison at

Credit to Jason Morrison at

The Terrifying Reality

The Terrifying Reality

Imagine this scenario.

You’re need a job, but there’s a new system in place – in the form of one single interview.

You don’t fill in an application, or apply for a job that looks right, instead you sit in front of someone.  They’ve never met you.  They don’t have your CV, your history, your qualifications.  All they know about you will be gained in the next few minutes and by looking at you.  They ask you a list of questions.   They seem quite irrelevant – none allow you to explain what skills you have, what your strengths are, or enable you to sell yourself.  The interview ends, and there’s so much more you want to say, to explain.  At the end they hand you a piece of paper with your job and salary on.

You splutter at the unjust nature – how they can decide what you can do without knowing your background, just by looking at you?   They have no training in employment, or in your specialist area.  Yet they’re deciding your future.

That’s exactly what happens when assessing whether a person with a disability can work or not.

The assessor is not usually medically trained.  If you have a rare or complex condition, they won’t receive any information about it beforehand or speak to a specialist.  They do not receive your medical record, any consultants letters, etc.  They have set questions to ask they may have no baring on the condition.  It does not take into account someone who may be reasonably well one day, and bedbound the next.  Or the complexities of your situation, or the reality of your day-to-day life.

They judge you just by looking at you, which is difficult for all the thousands of invisible conditions out there.

And it’s just getting worse.

Thousands die each year after being found fit for work or other benefit cuts.

Would you want your life to be decided by someone who knows nothing about you?  Who has no training?  Just ticks boxes that do not relate to you in any way?

No?  Then why should the disabled people of Britain face this?



Atos (Photo credit: Wikipedia)


And the results are in…

And the results are in…

Finally after years of stress, struggling and tears I’ve been awarded Disability Living Allowance.  Both Care and Mobility, at Higher Rate Indefinitely.

They sent the confirmation six working days after I saw the doctor – which isn’t long at all, although it felt like an eternity.

I can’t explain what a difference it will make.  I now become entitled to Working Tax Credit, free prescriptions and dental care (because of the WTC), can get a motability car or free car tax.  Overnight my income more than doubled, as I was living off 16 hours a week at minimum wage.

I will be able to afford to pay for the treatment I need, and help pay for a cleaner to help mum out as she has to look after the whole house and care for me.  And I can put towards to rent to get us a bungalow – something we have been struggling with the council for years with.  A bungalow would allow me to be able to access my own room, access the toilet and have parking outside the house – rather than down the street.

So to those out there still battling the system – please don’t give up.  It took me three claims, two tribunals and two medicals – but I got there in the end.

I do kind of want to send my award to the head of the second tribunal who said I was contriving my conditions/help I need, and to the first GP who did my medical who said there was nothing wrong with me with a note to them attached  – you can imagine what that would say, but a hint is that it’s two words long.

I now have a pile of consultant’s reports telling them they were totally wrong, and an indefinite award in response.

Credit to Steffen Zelzer at

Credit to Steffen Zelzer at

It’s a fantastic feeling.

The dreaded medical finally arrives

The dreaded medical finally arrives

My DLA medical finally arrived yesterday.  If you remember I had some difficulties over the location, first by them saying I couldn’t have it at the centre, before they said I could as it was accessible.

The same friend helping me with the claim came with me for moral support and to be a witness, as my last medical went so horribly wrong, when he put the opposite of what we talked about down throughout the form and declared me fine as detailed in the post ‘Applying for Disability Living Allowance Part 2.

We arrived at the door and pressed the buzzer for entry.  I was slightly worried at the big step into the building, but saw a sign with a wheelchair on, that said to ask for assistance.  I assumed there was a door around the side or something with level access, but when the receptionist came to the door she informed us that was actually the only door.  So yes, I did have to get my wheelchair up that step and the building for accessing people with disabilities did not have wheelchair access.

I asked if there was a ramp, and the receptionist said there wasn’t.  My friend pointed out we’d informed them I was coming in my wheelchair, and the receptionist snapped she hadn’t been told.  I then asked if she could help me, and she said she wouldn’t.  It’s important to note the lady helping me is also disabled, and is on two crutches, so there was nothing she could do.  But instead of recognising this, the receptionist turned to my friend and said “You’ll have to tip her in.”

My friend pointed out she physically couldn’t, and finally the receptionist said she’d see if security was about to help me.

This whole issue made my anxiety levels which were already ridiculous jumped to heart palpitations with the urge to curl up in the corner of a room rising.  I was embarrassed, and just wanted to abandon ship.

The receptionist returned to say there was no security in the building, and that I’d have to get myself in.  Again, we both turned to stare, before she decided to go and get the doctor to inform him I couldn’t get in.

Luckily at this point a really kind man walking past stopped and asked if I was okay.  I explained I was trying to get into the building, but couldn’t.  I thought it could probably make the step in the electric wheelchair, but I couldn’t do without someone standing behind just to steady it in case it tipped.  My wheelchair has two small anti-tip wheels at the back, that actually make it more difficult going up steep steps, so he managed to adjust them out the way, then helped me up.   Thank goodness for human decency.

The waiting room had a lot of chairs in the way, so I decided it was safer to just to wait in the corridor.  The doctor came and got my notes from the receptionist and went to read them, while she came to look at my ID.  The letter said I needed my passport, or three other forms of ID.  While fishing them out, she said I only needed one, and that she had no idea why it said I needed three.  I explained her we weren’t blaming her for the building, we just couldn’t believe they hadn’t made provisions for a wheelchair.  She agreed and said the building was terrible.

The doctor then called me in, and we both went in.  He seemed confused as to why I had been called in for a medical having read my information, and apologised for me having to come in.  He then  asked if I already had DLA, and I said no.  First claim?  Nope.  Third.  He seemed shocked, and asked if they’d seen all my medical evidence.  I explained they hadn’t seen the exact information he had, but I’d had other evidence and knew what was wrong with me.

He then said although he could write a whole report on my medical evidence alone, he still had to go through the form with me.  We went through everything, and he did a few minor physical tests like a grip test which he said was poor.  He didn’t make me stand as he realised it would be painful.

At the end he said he didn’t make the decision, and they are turning a lot of people down, but he would do his best for me.

I would love to be optimistic at this point, but I have just been screwed over too many times before with other medicals and tribunals that I can’t be.  I need to have the decision in my hand before I let myself think anything.

Now all I can do it wait.

Credit to Jesse Therrien

Waiting.  Credit to Jesse Therrien

DLA Saga Continues

DLA Saga Continues

On Tuesday the DLA doctor turned up at my doorstep – despite the medical being cancelled.

Yesterday the lady from ATOS phoned to give me a new date for the medical at the centre.  So they are continuing to go through with the medical despite the fact my claim has yet to be looked at.  Interesting tactics.

In other news, I’ve been signed off work for a month.  Hopefully it will help, as I’m just so exhausted at the moment.

Credit to Kurhan

Credit to Kurhan

New Claim Update

New Claim Update

Today was the seven year anniversary of my Nanna’s death, and as a family we go somewhere she liked to visit.  We were supposed to be going to Felixstowe today, but sadly the weather was so bad we ended up having lunch then heading to a shop in Hadleigh.

In the meantime, the lady helping me with my third DLA claim spent the day on the phone battling on my behalf.  She first spoke to the Medical Centre reception and asked whether they were wheelchair accessible, and they said they were, and they couldn’t understand why Atos had told me I couldn’t have my medical assessment there on Health and Safety grounds.

She also contacted the disability help line (not sure if this is the right name?) who were shocked at what was happening.  They phoned Atos on my behalf and asked why an earth I was being told I had to have a medical, and why was I being sent for a medical when they hadn’t read my claim form yet – as all the specialists letters in there give them in the information they need.  (I’m not exaggerating, they were brilliant, in-depth letters that should get me DLA based on those alone.)  The lady at Atos denied saying this until she finally looked up my file and apparently went quiet – so what she saw on the screen, I don’t know.


Atos (Photo credit: Wikipedia)

Atos said they would write to me with a new date of the medical, but the lady helping me is very hopeful that they may actually look at my claim form first.  This would mean the world to me, as I’m not sure I can face the stress of a medical at the moment, and the subsequent lies and the way they twist my words into something I never, ever said.

Thank god for this assistance.  She really is doing her best to fight for me, and I don’t know what I would do without her.   I’m perfectly able to fight for other people, but as soon as it comes to me I just become an emotional wreck – and you can’t when dealing with the Department of Work and Pensions or Atos!  So I just can’t thank her enough.

Applying for Disability Living Allowance – part 2

Applying for Disability Living Allowance – part 2

I detailed my first experience claiming Disability Allowance in a previous post.  The second occasion was a year or so later, now with higher care needs, and needing to use a wheelchair and walking stick.  This time I received a response saying I needed a medical within a couple of days of sending off the forms – before they could have even read them.  I was told a doctor would come to my house.

The doctor seemed fine at first.  He asked about my daily life, and what was wrong with me.  I had made notes beforehand so I remembered to cover as much as possible.  However, he made it pretty obvious he didn’t believe in my condition without actually saying so directly, and snapped at me numerous times when I forgot what I was saying (part of my condition.)  His ‘examination’ was dubious.   It was literally the following: listening to my chest, poking me twice in the spine, and asking me to walk two steps with my walking stick.

I received a letter saying I’d been turned down not long after.  I appealed and the process meant they first reconsidered it automatically.  I immediately requested the doctor’s report before they reconsidered so I could see what evidence they were basing their decision on, which I felt was fair enough.   I was told this process usually took some time, and I’d have enough time to respond to the report and submit new evidence in addition.  Instead I was shocked to get a letter shortly afterwards saying they’d turned me down at the reconsideration stage without me seeing the evidence or having a chance to respond.

It wasn’t until shortly before the tribunal I received a copy of his report, and was horrified.  He’d watched every little thing, and instead of asking why I did something, he put it in the report and twisted it.  For example I at one point for a minute or so I sat cross-legged because I’m hypermobile, and sitting straight on hurts my legs.  I regularly change position to stretch out my back, and legs.  He instead wrote that I sat in the ‘lotus position’ throughout with no problems.

One symptom of my condition causes extreme sensitivity, sometimes to sensations that shouldn’t be painful.  This is called Allodynia when a normally innocuous stimulation causes pain.  I particularly struggle with clothing, and so most of the time I wear loose fitting clothing.  On the day on the medical I was wearing a baggy top, and loose pyjama bottoms.  They were coloured, as PJs often are.  I wasn’t making a fashion statement, but everything else was too painful.  I had detailed the struggles I have had in relation to mental health and living in pain to him.   However on the page he should have detailed all this on, he instead simply wrote that I wore ‘bright coloured clothes’ so couldn’t be depressed.

He also wrote that I had nothing wrong with me.  I could walk fine with no problem and could walk 600 metres.  I had no joint problems and no care needs.  He wrote my memory was fine, and failed to mention the notes in front of me I was using to jog my memory.  I couldn’t believe it.

Again, it went to tribunal and a lady from Welfare Rights at the Council said she would represent me which was a great relief as I’d found the previous tribunal awful and very stressful, which made my condition worse alone.  But she informed me she was going into hospital and wouldn’t be able to attend with me during July.  I phoned them up straight away and informed them of this.  I was told it was fine, they’d made a note on the system  and I wouldn’t be given a date during that month.

Surprise, surprise I then got a letter with my tribunal date set for July!  I phoned them up again thinking they’d say no problem, and send me another date but instead I was told I didn’t follow the correct procedure.  My representative should have written to them to introduce herself, and inform them of these dates.   I protested that I’d spoken to the tribunal service and not been told any of this, but that it had been noted.  I was told that person had been wrong.

My only chance now was to appeal against the date in writing to the judge.  When I informed the representative of the outcome she was very suprised, despite having been in her job for years.  So I wrote my letter to the judge, explaining what had happened, and that due to my condition I’d find it tiring, painful and stressful to represent myself, and there was no one else.  I heard nothing, so I phoned them up a couple of days before the date and was told my appeal had been refused, but no reason had been given and I had no choice but to struggle on alone.

Once again it was a panel of three, but this time a representative from the Department of Work and Pensions was there in addition.  I was pretty worried – thinking he was going question me too, but he was fine.  He asked one question about how far I could walk, and otherwise remained silent.

The judge this time seemed motherly and nice.  She said my mum could talk freely and not to worry.   She asked if I had any comments about the GPs report.  I had put together a massive submission arguing with every point the decision maker had made, and then every point the GP had made.  I went through it and pointed out every single error.  At one point the Disability Specialist rolled her eyes and laughed openly at me as I spoke in a derisive.  They didn’t seem to be listening.

Next the GP then started his questions and went over my conditions, asking how things affected me.  At one point he asked how my memory affects me, which is a bit of a sore point with me.  I burst into tears.  He asked if I needed a break, but I was a total wreck.  I hadn’t slept, I’d been throwing up and shaking like a leaf.   I was wound up tight, ready to snap.  I just wanted to get it over and done with and so I pressed on.  He asked how I worked.  I explained I was doing seven hours a week, I could work from home if I needed to, and I had equipment in the office to assist.

The Disability Specialist came in, going over every detail of my day.  Again, I found pure ignorance.  Why don’t you get a commode to save struggling downstairs at night, she said?  I tried to explain there was no space upstairs for one.  I live in a tiny Victorian terrace.  There isn’t even a landing, and the room fits a bed, and not much else.   But even if I did have one, I would need help to get out of bed, and to empty it – which is still a care need, but she wouldn’t listen.  She kept suggesting things, without giving me time to explain why it wouldn’t work for me.   She obviously found ‘easy’ solutions to my troubles, and didn’t give a crap they were unworkable.

How can you drive if you have bad wrists?   I found resting my arms on my legs, and gripping the wheel at the bottom more comfortable, and I only ever drive very short distances and stop often.  How can you work?  With a lot of help, adjustments and patience.  They fired questions at me, then asked them again slightly differently, as if they were trying to catch me out.

What do you do in your spare time?  I paused here.  I had been warned about this question.  Say you watch TV and they will say your memory and concentration in fine, and that you can sit without moving for hours, even if it’s not true.  Say you do anything that requires moving, and you’re doomed.  I felt each question was a trap, as they weren’t going to take into account the reality of the situation.

So I said I didn’t do much at all, but I read sometimes.  She asked what was the last book you read?  I couldn’t remember, but then I said I thought it was a crime novel.   And then added a truthful statement – “actually, it was kind of funny – I got to the end when they revealed the killer, and I couldn’t remember who it was, so I had to go back to the beginning and find out.”  They all laughed, oh dear, she said.

The judge started asking about my mobility.  Can you walk over there?  She pointed to the other end of the car park.  I’d already stated at this point I could walk about two minutes with difficulty, so I said if I can do it in two minutes and it’s all flat, otherwise no.

The GP: How did you get in the building?  I parked and came in. His eyes lit up – so you walked up the flight of stairs?  Nope, I parked round the park in the disabled parking, and used the lift.

I don’t remember much more, but I came out feeling like I’d been through the wars, but that I’d put my case forward.  Yes I had care needs, and no I couldn’t walk without severe discomfort.

Instead of allowing me to wait for the decision, they said they’d put in the post and it would be with me on the Tuesday morning.   The Tribunal was on the Monday.  I pretty much collapsed and spent the rest of the day in bed in agony, and the Tuesday as well.   I hoped it would arrive on the Tuesday.

It didn’t.

The Wednesday was an agonising day from hell.  I was at work so had no way of getting to the post until evening.  I prayed it had arrived.  I was hopeful though – I’d been truthful, and answered every question explaining the difficulties I have.

I remember walking in after rushing home from work, to find mum had got home before me and opened it.  She stood with tears in her eyes and her face the only answer I needed.  They’d turned me down.

Credit to: Michel Meynsbrughen

Credit to: Michel Meynsbrughen

This time I wrote to the judge to ask her reasons.  It’s the worst thing, the tribunal just say no –  but they don’t actually tell you why.  There is no set time the judge has to respond to requests, so it took about four months for it to arrive.

It began by laying out everything I said – she needs this, this and this help.  She has this condition.  Then it got to the reasons – she seemed to exaggerate everything she said, and we believe her mobility is fine; her mum only cares for her out of love, not need; she said she could read a crime novel, so her memory is fine; she got through the tribunal questions without a break, so her concentration/stamina is fine.

It pretty much led to a mini-break down.  I couldn’t face a system that called you a liar, and didn’t offer any reasons why and twisted the truth.   I was exhausted.  Mentally and physically.

I was turned down about a year ago now, and I am only just making my third claim.  I now have numerous consultants letters – fantastic ones that detail my condition, how it affects me, the fact I can’t cook a meal and why, that I’m in a wheelchair.

I had help someone who has Fibromyalgia, and spends a lot of time helping people with claim forms.  She put my needs into the ‘right’ words.  She has the knack of covering a variety of topics succinctly, without going on like I do.  I sent the form in, and two days later I had a phone call to say I needed a medical.

I phoned the Department of Work and Pensions up and asked why, with my seven letters, all from top London professors, did they need more information? Oh,  I don’t know, she said, it’s up to the decision maker.  Can I speak to the decision maker?  No.  I then asked her a trick question:  Will they be looking at my previous claims?  Yes, they’ll do that, she said.

BUT THEY ARE NOT SUPPOSED TO!!!!!!!!!!  Each claim is supposed to be a fresh one.  I have more than one new diagnosis, new medical evidence.  They have no reason what-so-ever for opening up the old claim forms, but there is no way in hell they have even opened my new claim form, the phone call came so quickly.   So clearly I was flagged up straight away, and I’m being shipped to a GP with no specialism in what’s a complicated set of conditions.

Anyway, the company behind the medical is called Atos, who have a terrible reputation.  I phoned them up to make the appointment, and they asked if I could go to the medical centre in town.  I said as long as it’s got parking outside, it’s no problem.

She then asked if I was in a wheelchair, and I said yes.  She then said oh well you can’t go to the centre, if you’re in a wheelchair or can’t walk unaided, we don’t allow people there for health and safety reasons.

So to make this clear – the building they use in Colchester to assess disabled people, either for Employment and Support Allowance (for those that can’t work) or Disability Living Allowance – is inaccessible for disabled people.  It’s like banging your head against a brick wall.

I will keep you updated to how my claim goes.  I’m trying to be positive, but drove past the tribunal building today, and I have this horrible feeling I’ll be seeing it soon.

Applying for Disability Living Allowance – part 1

Applying for Disability Living Allowance – part 1

This a tough one, and one I’ve been avoiding.  Just the words ‘Disability Living Allowance’ makes my stomach turn into a big knot, and a nauseous feeling to pass over me.

There is a perception that disabled benefits are easy to get, and that most are fraudulent so I just wanted to talk about my experiences so far.

For a start – the basics of Disability Living Allowance (DLA).  It’s a benefit for the under 65s (over 65s get Attendance Allowance unless you’re already in receipt of DLA when you turn 65).  It has two components to it – mobility, and care.  The idea is that they aren’t really meant to worry what’s wrong with you, but how it affects you.  So a person can get either one component, or both.  The care part is then split into three – low rate, middle rate and high rate.  The mobility has just two parts – low rate and high.    Low rate mobility is meant to look more at the non-physical side of mobility (bear with me here!).  This is usually around someone not being safe to walk without supervision i.e. they have a condition that means they struggle to understand danger, or perhaps they regularly get dizzy and may end up in the road, or may sometimes refuse to walk at all due to a condition such as Autism.  The high rate is meant for people that (usually physically) can’t walk at all, or is “virtually unable to walk without severe discomfort, or at risk of endangering your life or causing deterioration in your health by making the effort to walk.”  It can also be awarded for sensory conditions.

If someone is awarded High Rate Mobility, they can join the Motability Scheme and swap their money for a car, or wheelchair or scooter.  A car can be adapted to your needs either for free, by a grant or by self-funding.

I’ve tried to summarise it simply, because it’s actually a very complex benefit with pages and pages of rules and laws, that they frequently completely ignore.  Okay, my bias is showing already!

One other important point – the benefit is for the additional costs of being disabled.  You can work full time with it and still quality.

I first applied some years ago. I was at university when I did so, which didn’t help in hindsight.  A lot of the things I had a problem with at the time I found easier at university.  At home my bathroom is downstairs, my bedroom is upstairs. At university my bedroom was downstairs along with the bathroom, and it was right next door. My bath is a pain in the bum to get into, but at university it had an actual shower with a low step.  My care needs were no where near what they are now, but my mobility was fast going down hill, and I was struggling on by the skin of my teeth.

I was immediately turned down and so I appealed and went to tribunal.  By the time it got to tribunal I’d finished university and was back living at home.

The tribunal was interesting. They started out seemingly pleasant, but soon got down the business.  A tribunal is made up of three people – a judge, someone with medical knowledge (usually a GP), and someone termed a ‘disability specialist’ – at that time someone who works with disabled people.

Credit to Jason Morrison at

Credit to Jason Morrison at

First of all the GP argued with my diagnosis – despite not being a rheumatologist or specialist in any way.  Without examining me, he decided I couldn’t possibly be hypermobile.

The disability specialist was rude, and ignorant.  She asked silly questions like why my car wasn’t adapted (because I need high rate mobility to get it adapted, or thousands of pounds?)

The form for DLA is very long.  It tends to work by starting with tick boxes – for example – do you struggle with walking yes/no.  It will then ask in what way – i.e. do you limp, walk slowly, etc and then finally has a box for you to explain.  (These aren’t the actual questions, by the way.)  It asks the same questions in slightly different ways over and over, and there are multiple tick boxes on each page.

At one point the judge asked if I needed help during the day.  I said yes.  He asked me to turn to a certain page of my claim form.  There was a hush while everyone thumbed through the form.  He asked the question again and pointed to a single tick box on the form that I’d left blank.  I hadn’t said I didn’t need help, or that I did.  It was blank.  However every other box on the page was filled in, and there was a list of ways I needed help in the text box, so it was clear it simply hadn’t been ticked in error.  He then asked me to turn to the final page where the declaration is.  He slowly read it out – that to the best of my knowledge  everything was truthful in the claim form.  Did I agree?  Yes, I said.  But you haven’t ticked the yes box, he said gravely.  So it’s false.  I felt like I’d just committed a crime.

At another point he began questioning me about distances.  I explained to him I have dyscalculia, so distances mean nothing to me, so could he use time instead.  (I.e. can you walk for 30 seconds, or whatever, because that I can understand)  Instead he angrily kept repeating the same question using distances.  My mum saw I was getting upset and tried to help me by explaining the distance, but he snapped at her to be quiet and ‘not to help me’.

The questions about how I coped at university kept coming up.  I tried to explain the above – the ways I’d managed, the support from friends – but it was just rejected.  The questions continued in the same vein, until they asked me to leave for a few minutes, and then called me back in to turn me down.  I can’t say I was surprised.  I decided I would apply again, as my condition had continued to go downhill anyway.

My experiences with my second claim can be found here.