Appointment with Ehlers-Danlos Syndrome specialist consultant – Dr Hakim

Appointment with Ehlers-Danlos Syndrome specialist consultant – Dr Hakim

Credit to Kurhan

Credit to Kurhan

Yesterday I went to London to see Dr Hakim, one of the top specialists in Britain for Ehlers-Danlos Syndrome.

I was nervous when I got there – I always am before I see a consultant, due to many, many bad experiences.  However he immediately put me at ease, and was a nice, approachable person.

I’d made a list of problems I wanted to talk about, and he made a note of them and went through each in turn giving me ideas and suggestions of particular treatments or medications I could try.

He said in terms of exercise I was doing everything right, and everything I could.  This meant a lot, as I’ve had medical professionals be so judgmental with no understanding of how hard it is to do the ‘little’ I do without putting myself in bed for weeks.  I told him what one Pain Consultant had said – that I should be exercising six times a day.  He said it was such an easy thing to say, and proved how little he knows.

We spoke about my Physiotherapist Leon Stephens at Sudbury Physiotherapy Centre who specialises in Hypermobility, and has been great, and Dr Hakim knew of him, which was good.

At some point this year I need to renew my Employment and Support Allowance, and in the next couple of years my indefinite Disability Living Allowance award will be changed over to the replacement – Personal Independence Payment (PIP).  I’m terrified about both of these, as are most disabled people in the country who currently rely on them – or may need them in the future – to survive. I never know how people may react to something like that, due all the ‘scroungers’ rhetoric in the media, that has been picked up by so many.

Since I received my diagnosis letter in 2011 – I haven’t had a decent letter from a consultant that I could use as medical evidence. I’ve seen lots of consultants, but letters are generally of the “Treatment x didn’t work, been discharged” variety which won’t help much in terms of summarising where I’m currently at on the whole. I feared the lack of letters may go against me, as the Department of Work and Pensions will argue I can’t be that bad if I don’t see a consultant regularly.

Dr Hakim was very understanding of this, and we spoke at length about the PIP changeover, and he knew how hard it was on his patients.  He said it’s obvious the reason I don’t have new evidence is because I’m doing the best I can at home to manage, but he would write an updated version for me to keep on file for when I need this.

This will take a huge worry away from me, so I’m thrilled.

He recommended that I take a multivitamin daily – he mentioned the Well Woman one, to make sure I’m topping up on anything that could be contributing to my levels of fatigue.  He’s also going to ask my GP to check every blood test has been done, including the T3 Thyroid test that the NHS often miss out. He also suggested getting some Melatonin from the US, as well as suggesting some other sleep and pain medications I have yet to try that he’s going to suggest to my GP to look into (I can’t remember the name of them currently!) He also recommended some consultations in other fields that I could see if I continue to get nowhere locally.

He also suggested that anyone with POTs or autonomic dysfunction (including sleep problems) to drink an Isotonic drink called Nuun. He explained that they tell people like us to keep hydrated, so we drink water – but it actually make things worse as it dilutes the salt in our blood, so our kidneys then filter it and we pass it out with urine leaving things actually worse. (Or something like that!)

So he suggested drinking a salt isotonic drink which means that we are really hydrated, as drinking liquid with a similar salt content as our blood means it will do its job, rather than being filtered and disposed of straight away. Most of the similar products on the market i.e. sports drinks, Lucozade, etc are full of crap and sugar, so he suggests Nuun as it doesn’t add much else, just some flavouring.  He suggested at a minimum to drink one before bed, and one as soon as you wake up, and this should stabilise some of those issues.

They are pretty expensive, but we only need half a tablet at a time, as the whole tablets are designed for athletes.

We also spoke about Prolotherapy, which is a new therapy I’m hearing a lot about recently, mostly from Americans, and I was interested in his thoughts. He said there was no evidence for it, and some of his patients had been made worse by it.

I found Dr Hakim very understanding, kind and obviously knowledgeable. All in all it was a great appointment – and when his letter arrives I will add anything helpful I’ve forgotten!

Professor Grahame retired from NHS patients some time ago, and is no longer taking on new private patients. I believe he may still have a private clinic for under 16s, but Dr Hakim is a perfect alternative.

Seven Questions to Ask About the Cuts to Access to Work

Seven Questions to Ask About the Cuts to Access to Work

http://www.dreamstime.com/stock-image-disabled-man-his-co-worker-talking-boss-men-vertical-image43205541

As I’m sure most of you have heard, a couple of weeks ago Lord Freud suggested that some people with disabilities may not be worth the minimum wage, and some could be paid £2 an hour instead for employment.  His off-hand statement has of course garnered a backlash including calls for his resignation and a petition asking for him to be fired. Lord Freud has since apologised, releasing a statement stating that he has been “proud to have played a full part in a government that is fully committed to helping disabled people overcome the many barriers they face in finding employment.”

However, this statement couldn’t be further from the truth. The government have in fact done the opposite and driven many people with disabilities out of work, by cutting vital support in the form of the Disability Living Allowance to Personal Independence Payment transfer; removing Independent Living Fund, cutting funds to councils for Direct Payments and reducing what support Access to Work will fund.  These cuts tell a different story, and leave many people with disabilities having to reduce their hours, change the type of work they can do or leave employment entirely.

Working with a disability can often be very difficult, both in terms of securing employment, the on-going difficulties some face with juggling their health and work, as well as employers and colleagues attitudes.

What is Access to Work?

Access to Work is a scheme set up a number of years ago with the aim of helping people with disabilities attain and remain in work.  It’s worth around £80m a year, and can be used to pay for a range of equipment, adaptations and assistance. However changes have been quietly happening to the scheme, putting much more of the onus on the employer to fund this support.

Instead of suggesting people with disabilities should work for less than half that of a non-disabled person, the government should instead be increasing funding for Access to Work, and promoting it to employers.  Many still do not know it exists, or what kind of help it can provide.

Employers often think that the implication of employing a person with a disability will be that they will cost more, and sadly due to the subtle cuts to Access to Work this is becoming true in some cases.

How did the scheme previously work?

At the time I had my first Access to Work assessment the rules were that if you applied for an assessment within your first six weeks of work, they’d usually cover the cost of any disability-related equipment/support required, and after six weeks it would be down to the size of the company.  For a smaller employer they’d still pay, for a medium sized company they’d contribute, and for a larger firm they’d expect them to pay.  This was a pretty fair system – and it reduced the risk that a disabled person would not be offered a role because of the extra cost for their support.  In that first job I was given a range of items to help me – from a specialist chair, to smaller items that made life easier, such as an electric hole punch/stapler.

How has that changed?

They have now decreed that the company has to pay for pretty much everything.

So by the time I changed jobs and was taken on by a small charity, the rules meant almost everything I’d had funded previously was now not covered by the scheme.  My new assessment asked for a specialist chair that included heat to try and ease muscle spasms, a desk that could be raised, an £80 headset so I could answer the phone, a recording device or electronic notepad for taking notes in meetings and numerous other items that directly related to my disability and the role I was doing.

The bill was thousands.  My Access to Work Advisor managed to get the chair funded, as the heat function pushed it past a standard item, but what was left was still a lot of money.

I’d just convinced that company to take a chance on me, and had already had to bring up all the reasonable adjustments I needed from them, and now I was supposed to hand them a huge bill?  So instead I looked over the list and decided what I really, really needed, and what I could live without even if it made life more difficult, or more painful.  Only then did I hand my list over, with my fingers crossed they didn’t find a way to get rid of me.  I really didn’t want to be seen as more hassle than the non-disabled person they’d picked me over.

What impact has this had?

Statistics show that disabled people are much more likely to be unemployed than non-disabled people. So my fears that employers see disabled people as more costly are true. It’s very short-sighted of the government, as funding the one-off bill for equipment a disabled person may need to work, could keep that person in a job rather than having to pay for much longer term benefits.

What won’t they fund?

The list of items Access to Work will no longer fund include chairs, electronic adjustable desks, perching stools, back wedges, analogue hearing aids, laptops, temporary wheelchair ramps, voice recorders, anything to do with phones (i.e. headsets, mobiles, etc), writing slopes, staplers, hole punches, and much more.

The fact is that many of those items cost significantly more for a disabled person than a standard work, or  the item wouldn’t be required at all without a disability.  For example the ergonomic keyboard I was provided cost approximately £60.  A standard keyboard is around £20, and probably cheaper if buying in bulk for a whole office. A standard hole punch is around £2.99 and a stapler similar. The electronic one I was provided was £40. These prices soon add up, including a specialist chair without the heated function (£600+), electronic height adjustable desk (£500+) and a laptop for home working (£700+).

What about people that have longer term support in place?

The changes have impacted them also. Those that do have long-term support paid for by Access to Work, such as personal assistants, daily transportation or interpreters are now finding they are having their support constantly reviewed, sometimes even on a month-to-month basis which means they are under a huge amount of stress that the support they rely on could be pulled, or reduced at any moment. Other people are being told that high levels of support are only available to people in certain professions and that their work won’t be covered under the scheme.

The government are shooting themselves in the foot here because by funding the support that somebody needs – for example a personal assistant, means that two people are being employed. Otherwise they’ve got two people on benefits, while they’re pumping millions into coming up with new schemes run by private companies to put pressure onto these people to find employment.

They’re also regularly making changes without a consultation with the user base, or any kind of impact assessment.

How can this be fixed?

People with disabilities don’t want to be told they’re worth less than a non-disabled person, as it’s an incredibly untrue statement.  What they do need to know is if they happen to require support to work (and not all disabled people do of course), is that it will be funded by the scheme that was set up for this exact purpose, and that it won’t be stopped or reduced for superfluous reasons.

Increase and strengthen the funding, and see a happier, less stressed workforce, and not so many having to fall back onto the benefit system.

What have been your experiences with Access to Work?  Has your support changed?  Please comment below with any thoughts/comments on the article.

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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

…and a new car!

…and a new car!

In order to get my new wheelchair, I also had to get a new car.  In the UK we have a benefit called Disability Living Allowance (well, for now, until the government rip it away.)  It’s a brilliant concept, designed to help cover the many extra costs of being disabled.  You can still work and claim it, as long as you meet the criteria.  There are two elements to it – Care and Mobility.  You can get one or the other, or both, and there a different rates within it.

If you’re awarded High Rate Mobility, you have three options.  You can receive it in cash form, or you can swap it for a car, or a mobility aid (wheelchair or scooter.)  If you pick the car option, you go through a charity called Motability, and in swapping the payment you get the car, insurance, breakdown cover, etc.  Everything except petrol.

There are a range of cars on the scheme, starting from basic where you simply swap the payment, to larger or fancier cars – where you pay an upfront cost beforehand.  One issue I have with this is many wheelchair users need a larger car to fit the wheelchair in, or the hoist.  It’s not a choice to have a large car for any other reason.  I personally, would be happiest with the smallest car possible (other than a Smart Car!) but I had to get a bigger one for practical reasons and that costs a much larger down-payment.

But it’s a great scheme and they also offer adaptations.  Some are free, such as hand controls.  Others you pay for.  They also have a grants system for low-income people to apply for to help towards the cost of either the car itself, or adaptations.

This scheme alone is responsible for thousands of people with disabilities leading an active, independent life, and being able to access the workplace.  Seriously, do you know how much adaptations cost?

So, my first Motabilty car was a Ford Focus.  I really liked it, and I had a hoist, but when I needed to get a better wheelchair, I found nothing would fit in the car that met my needs.

After looking at seventeen different car dealerships, and trying out what felt like hundreds of cars – I arrived back at Ford.  Their C-Max is based on the Focus, and isn’t much bigger – but it is taller and higher.  This helped both the hoist, and getting in and out.  I now have the car, and will use the pictures to explain more.

The front (obviously!)

The front (obviously!)

IMG_3822

The height makes it much easier to get in and out

The height makes it much easier to get in and out

There are lots of things to make driving easier - like it parks for you automatically

There are lots of things to make driving easier – like it parks for you automatically

The boot opens and closes at the touch of button, which can be reached from the wheelchair.

The boot opens and closes at the touch of button, which can be reached from the wheelchair.

The hoist for the wheelchair

The hoist for the wheelchair

The hoist in action

The hoist in action

The new hoist has four-way control - which is great!

The new hoist has four-way control – which is great!