Disability and the high cost of living.

We've read the newspaper stories and watched them on TV - the benefits scroungers.  They haven't done a days work in their life, they all have a big TV and get everything for free, right?

I am constantly surprised by people who assume that because I use a wheelchair I don't have to pay for anything.  It couldn't be further from the truth!

But the NHS is free!

Yes, up to a point, but there are some things that you still have to pay for.

To qualify for free prescriptions you have to be on a means tested benefit, such as Job Seekers Allowance, have a medical condition that exempts you such as a thyroid condition or be completely housebound. You can find out more here: Help With Health Costs.

My husband works full time so have to pay full price for my prescriptions.  At £8.20 each it would cost me around £600 a year for my medications! Luckily there is another option for me - a pre-payment certificate.  It costs £104 a year, I pay for it is 10 instalments of £10.40 and it covers the cost of all my prescriptions.  It works out a lot cheaper but it's still a cost that health non-disabled people don't have to pay.  It also doesn't cover the costs of the supplements and vitamins that have been recommended to me by my specialists which set me back around £400 a year.


Because I am not exempt from paying prescriptions charges I also have to pay for other medical treatments too.  I have Sjogren's Syndrome and the symptoms can cause dental problems.  I have to pay for two dental check-ups a year plus I usually have to have some work done. In the past 12 months I have spent over £250 on dental work.  I look after my teeth very well but the problems are unavoidable due to the complications of Sjogren's.  Just another perk of being chronically ill.

One of the possible side effects of taking Hydroxychloroquine is potential problems with eyesight so it is vitally important that I see an optician once a year to make sure the drug is not damaging my eyes. That's another £15 a year plus the cost of a new pair of glasses if my prescription has changed, which cost around £50 for a budget pair of frames.

I live in the East Midlands and there aren't many local consultants with the expertise to deal with my health problems.  That means I have to travel to London to see my doctors.  I don't qualify for free hospital transport and I can't leave the house on my own so that means my husband has to take a day off work and either drive us to London or go with me on the train. Depending how far in advance I can book the train tickets they can cost anything between £70 and £150, which is a pretty big cost for attending a hospital appointment.  Sometimes if the appointment is scheduled for very early in the morning we have to travel the night before and stay in a hotel, which can cost £60+ a night.  Four trips to London a year can be around £500 - all for the sake of managing my complex conditions.

Physio therapy is also another cost.  It is usual practice for the NHS to allow 6 sessions on one body part before the patient is discharged - which for chronic conditions is no where near enough.  After 6 sessions you are discharged back to the care of your GP and if you still need help you have to get re-referred and wait anywhere from a few weeks to a few months for your next 6 sessions.  Private physio is the only feasible option for some people but at a cost of around £40-£50 a session it can be prohibitively expensive.

But you get a wheelchair for free!

Yes, I have an NHS wheelchair but that does not meet all of my mobility needs.  I'm not sure what picture comes into your head when you think of a wheelchair, perhaps something lightweight and sporty like wheelchair basketball players use?  The kind that Wheelchair Services usually hand out are the big heavy old fashioned looking chairs that you'd find pensioners in nursing homes sitting in.  They are heavy, they are difficult to propel even if you are relatively fit.  I can't push my chair more than a few feet, and that's indoors on a smooth, flat surface.  They are also difficult to fit in a car so going anywhere is a challenge plus it's difficult coming to terms with the loss of independence if you need someone to push you everywhere.


If you don't like your NHS chair there are other options, but that will cost you extra.  There is the voucher scheme where they will give you a voucher for the value of a standard NHS chair and you can pick whichever chair you want but you have to pay the difference and you can only use the voucher at certain approved suppliers.  You can buy your own wheelchair but something ultra lightweight and sporty can set you back up to £4,000!


If you can't propel a wheelchair yourself  there is always the option of a powerchair but don't expect to get one on the NHS unless you are a full time wheelchair user and it is impossible for you to self propel.  And even if you do get a powerchair on the NHS they will only usually provide one for indoor use.  If you want to move around independently outdoors you will have to buy your own suitable powerchair and than can cost between £2,000 and £8,000.

Mobility scooters are a slightly cheaper option.  Starting at around £500 you can buy a car boot model which will dismantle and fit in a car boot.  These are great for nipping around the supermarket but they have limited battery life and are not great on pavements or uneven surfaces.  Larger scooters can cope with most terrains but they cost more, up to £8,000 and of course they won't fit in your car so you would need a van or a trailer if you wanted to use it away from home.

If you can't afford those prices you can lease a chair or scooter through the Motability scheme.  For a £100 deposit you can use between £20 and £55 of your weekly Enhanced Mobility Component of PIP or Higher Rate Mobility DLA allowance, but only if you're not using it to lease a car.

But you get a car for free!

You can get a car but it's not free.  If you apply for a Motability car you get it instead of your mobility payment so it costs you £57.45 a week.  The government has made it harder for people to do this by changing the eligibility criteria for PIP so if you can walk more than 20 metres you're not disabled enough to get a Motability car.

Some cars also require a non-returnable advance payment. The smallest, most basic cars have a zero advance payment but if you want something big enough to put your wheelchair or scooter in you may have to pay up to £9,000 up front.

But you get house adaptations and equipment for free!

No, not unless you're on means tested benefits.  There are grants available if you meet the eligibility criteria but if you have savings or a partner who works then you will have to fund adaptations and equipment yourself.  I have been assessed as needing a stair lift but because my husband works full time the OT told me it would cost £9,000 which is well beyond my means, so when I'm having a bad day I have to crawl up and down the stairs.  

I also need a bath lift.  I was offered one on loan but I turned it down as it did not meet my needs.  The OT recommended a different kind, but their department didn't supply them so I'd have to buy my own, at a cost of around £600.  I was also expected to purchase other aids such as an Easi-reach grabber and suction cup grab rails as the walls in my house were not suitable for the permanent ones the OT department supply.


So as you can see having a disability isn't the free meal ticket that some people make it out to be. Disability benefits such as PIP are there to help people with the added cost of living with a disability and those costs can run into thousands of pounds.  

There will always be people who would rather sit at home watching their big TV, but when you think about how it would cost them tens of thousands of pounds for an electric wheelchair and an accessible vehicle just to allow them to get out of the house then maybe £500 for a TV that provides them with entertainment and a window to the world outside then it doesn't seem quite so extravagant after all.

Tricks of the trade - Equipment for living EDS and POTS

It can be difficult coming to terms with using disability aids when you have a chronic illness like EDS or POTS.  I started using a walking stick when I was 18 and everyone assumed I had some kind of injury because everyone knows only old people are allowed to use walking sticks!  It was difficult to explain how I was chronically ill but I've learned to accept that sometimes disability aids can make your quality of life a whole lot better.

Some aids are more useful than others, and what works for one person may not work for another but I thought I'd share some of the things that work for me.

Mobility Scooter

I started using a mobility scooter 13 years ago.  Before then my poor husband had to push me around in my wheelchair and we both hated it!  It was hard work for him and even though it allowed me to leave the house I still didn't feel like I had full independence.  That all changed when I got my scooter.  I could actually leave the house on my own for the first time in 10 years!

I've had a few scooters over the years.  I currently have a Pride GoGo Traveller Elite 3.  It's small enough to fit in the book of a Vauhall Corsa but has enough power to get me around.  I would be lost without it.




Smart Crutches

I started using a walking stick when I was 18 years old.  My physio gave me an ugly grey NHS stick.  It was heavy and made a loud click every time it touched the ground.  I hated it but it was a necessary evil.  I got fed up of it pretty quickly and bought my own walking sticks but some were better quality than others and I had a habit of breaking them.  I fell in love with SwitchSticks walking sticks, I had a couple of different designs but my physio said I was an accident waiting to happen and gave me NHS crutches.

I was back to using the ugly grey walking aids until a friend told me about Smart Crutches.  They are an improved design that is very adjustable and supports your forearm which takes pressure of your shoulders and wrists, which is a big problem with standard elbow crutches.  They also come in a variety of colours - not just NHS grey.

I got a pair of petite Smart Crutches in purple and I love them.  They are quite heavy and I don't use them all the time but when I do I always get positive comments, especially from health care professionals.  They are not cheap at around £90 a pair but they are miles better than standard elbow crutches.

You can buy Smart Crutches from the website http://smartcrutch.co.uk/


Grab Rails

Social Services sent an OT around to assess my home.  He said I needed grab rails but because I live in a new build house with plasterboard walls he couldn't safely install them.  I was left to look for an alternative and I found one - suction bath grab rail.

The suction cups allow it to be placed on any smooth, flat surface, such as the tiles in my shower.  I can adjust the position so I can get it in exactly the right place and the switches make sure it stays there.  The best part was the price - at only £6 it was a bargain!

I've been using it for a few months now and it's not let me down yet. The manufacturer does recommend testing that the grab rail is secure before using it, I don't know how long the suction cups will last but when they do finally degrade it's not too expensive to replace.



Shower Seat

I was struggling to stand in the shower so my OT loaned me a shower seat.  A few years ago I'd been assessed as needing one but the OT didn't think they had any which would fit in my tiny ensuite shower. Lucky for me they had some corner shower seats.

It's a tight squeeze to get the door closed and it's not a very stylish piece of furniture but at least I've reduced my risk of falling over in the shower, which is good.







7 Day Pill Box

This is an incredibly useful bit of kit.  I honestly don't know how I managed without it!  I am on quite a few prescription medications and I also take quite a few vitamin supplements too.  It was getting confusing remembering the dosage and times of all the pills, sometimes I'd forget if I'd taken them at all and I was in danger of under or even overdosing, so I forked out and bought an Anabox 7 day pill box.  It wasn't cheap at £17 but it has been very good value.

Every week I fill it with my tablets and now it's easy to see if I remembered my lunch time dose of painkillers.  Each day comes in a separate box so if I'm going out I can just take that section with me.

The morning section is larger than the others, as most people take more tablets in the morning.  There are sections for morning, noon, evening and night, as well as an 'are required' section for any extras you might need.  It's simple and brilliant!  The only bad thing is having to fill it up every week.  Popping 140 tablets out of blister packs takes it's toll on bendy fingers!

I have a great local pharmacy and they have offered to make up my prescriptions into blister packs, which are very similar to this pill box, but as my medication can change on a weekly basis and I occasionally require more or less of some medications I prefer to be in control and do things this way.


Elastic Shoe Laces

A friend gave me a tip about these.  My podiatrist advised me to wear supportive trainers so stop my ankles rolling and prevent me from spraining my ankle.  They work but it's a chore having to tie the laces.  Elastic laces allow you slip your trainers on and off with ease.  I honestly don't know what I did without them.  They are relatively inexpensive to buy and come in a variety of colours to match your favourite trainers.  Available from sports shops and eBay.






Derby Half Step

There is a steep step out of my back door to the path which takes it toll on my knees and hips, especially in the summer if we have a barbecue and I have to keep nipping back into the kitchen.

I considered building a step with bricks and pacing slabs but that would have made it difficult for my husband to get the lawn mover around the back of the house so I searched the internet and found something called a Derby Half Step.  It's designed, as the name suggests, as a half step to make steep steps a little more manageable for less able bodied people,

I chose a sturdy plastic step with adjustable feet and a rubber mat.  I had to shop around for a good price, I bought mine for £60 but I saw them selling for as much as £130.  It has made using the back door much less painful and has been a worthwhile investment.

You can get a cheaper version for around £20 but I decided against it after reading many negative reviews about the steps cracking and breaking after a few months.


Recliner chair and footstool

I think everyone needs a comfortable chair, regardless of whether they have a disability or not.  I indulged in a recliner chair and footstool to improve my posture and to allow me to relax.  I need to keep my feet raised to relieve my POTS symptoms and sitting in a normal armchair with my feet on a box footstool wasn't great for my posture.  I went to a local furniture shop and tried out loads of recliners, most of which I didn't like, but I did find one - the Shangri-La Swivel Recliner and Footstool.

The chair swivels so I don't have to turn my neck to talk to people sitting opposite me on the sofa and the footstool is angled which allows me comfortable rest my legs.  It's the most comfortable chair I've ever sat in!  It was a relatively cheap chair compared to other chairs on the market, the fabric is already staring to wear on the footstool but my budget wouldn't stretch to a leather Stressless.  Maybe one day...


A Final Note

Disability aids can be very expensive.  If possible try them out at a disability showroom to see if they work for you before committing to buy, then shop around on the internet for the best price.

Some aids are available from your local Occupational Therapy team, such as shower seats and grab rails so ask for an assessment to see if you're entitled to any help.

Mobility aids can be very expensive and the NHS are not always able to provide the best equipment to meet your needs.  If you are in receipt of DLA higher rate mobility or PIP Mobility enhanced rate you can lease a powerchair or mobility scooter through the Motability Scheme.

I've got a wobbly knee cap!

Knee pain has been a big problem for me since I was a teenager but it's not something anyone ever investigated properly.

When I was fourteen years old I suffered a severe chest and sinus infection that caused a high fever and suspected brain swelling.  A few weeks later I became ill again, telling my mum that my knees hurt and I couldn't go to school because I had the flu.

When I was fifteen I was diagnosed with Myalgic Encephalomyelitis because no-one knew what was causing my malaise, joint pain and fatigue.

When I was eighteen I was admitted to hospital with severe pain in my joints, including my knees.  The doctors didn't know what was wrong as my blood tests came back normal.  They suggested my problems were psychosomatic because ME was fashionable at the time.  My GP wanted me to see a rheumatologist so my parents took me to see a private doctor.  I suffered a particularly painful examination and the doctor declared there was absolutely nothing wrong with my joints.  He admitted to knowing nothing about ME but suspected it was psychological and was he was insistent that I should stop using a wheelchair and get more exercise.

The pain never went away.  I started using a walking stick as I was unstable walking and I was referred for physio but that made my body weaker and my pain worse.  By the age of 20 I had to use a wheelchair outdoors as I could no longer walk any distance without severe pain and fatigue.

I continued to have problems with my knees and six years ago after a bout of strep throat I had a massive flare of pain which was diagnosed as post streptococcal reactive arthritis.  The pain persisted in my right knee and a local GP sent me for an x-ray but it came back as 'normal'.  The pain was blamed on 'wear and tear' and I was told it was something I'd have to live with.

Everything changed when I was finally diagnosed with Ehlers Danlos Syndrome.  Suddenly my complaints were taken seriously rather than being dismissed out of hand.  A few weeks ago I mentioned my knee pain to my GP.  I had been suffering swelling and tenderness under my right knee and a tender lump behind it.  She sent me for an MRI scan to investigate the problem.

When I phoned the surgery for the test results I was given a vague message, 'Consistent with Ehlers Danlos syndrome.  No further damage'.  I was a bit disappointed.  It didn't really tell me anything and I thought my problems were going to get swept under the carpet and ignored once again.  I made an appointment to speak to my GP about the results and what I found out I have a wobbly knee cap!

After 25 years of problems I finally knew what was wrong.  My patella showed lateral tilt and subluxation which could be due to patellar instability.  I had a slight patella alta, dysplastic flattened trochlear notch and early patellar chondromalacia.

In English that means my knee cap is at a funny angle, it's too high, there is no grove to keep it in place when I bend my knee so it partially dislocates, and the back of my knee cap is worn down more than it should be.

This fits with my diagnosis of Ehlers Danlos Syndrome and explains why I have found it so difficult to walk and exercise.  I don't have a fear of moving or hypersensitivity to pain, I actually have a physical problem.  It's news I didn't want to hear but it is reassuring after so many years of disbelief.

The next big question is what can I do about it?  I have been referred to an orthopaedic surgeon to discuss my options.  In otherwise healthy people they would do surgery to correct the problem but EDS complicates things and could potentially make things worse.  It looks like I have some hard decisions to make but I'm hoping I will be given a few options regarding my potential treatment.  I am frustrated that it has taken this long to find out what is going on but at least now I have a way to move forward.

Sam's Amazing Loom Band Challenge

Words cannot describe how proud I am of my nine year old son, Samuel.  Early this year he came to me and said he wanted to help people with EDS.  He'd had an idea, he loved loom bands and he wanted to make a 500 metre long band in a fundraising challenge for Ehlers Danlos Support UK.

I thought it was a wonderful idea so we support Sam the best we could.  He already had quite a collection of loom bands but we calculated we would need tens of thousands of bands to complete the challenge so we started buying up bulk packs of loom bands on eBay.

Sam worked incredibly hard, every spare moment he tirelessly worked on his project.  Every morning, every afternoon when he came home from school, every evening after tea.  He showed such dedication I knew he would reach his target.

I set up a Just Giving page for him and we put out requests for any unwanted loom bands.  We had an amazing response, including a very generous donation from a boy who had been making loom bands for a local hospice charity.

Despite being quite poorly in April with a chronic cough Sam continued his challenge.  We measured his now giant ball of loom bands on the pavement outside our house and he was almost half way there!

Measuring the loom bands proved another challenge.  I made Samuel a measuring wheel out of cardboard and Kinex and with the help of his friends and my PA we measured the now giant reel of loom bands.  475 metres!  Almost there!

Sam didn't give up.  When his friends came to call he would tell them he was busy finishing his loom bands and I'm very proud to say he reached his target.  All by himself he had made a loom  band over 500 metres long!

Ehlers Danlos Support UK were very kind and sent Sam a certificate to mark his achievement.  Sam wanted to make a video to thank everyone for their support.

Sam's next challenge is to reach is £150 fundraising target.  Can you help?  Please visit our Just Giving page:

www.justgiving.com/SamsChallenge

Ehlers Danlos Awareness Month

May is Ehlers Danlos awareness month.  On social media every month seems to be an awareness month for something so why should you be made aware of Ehlers Danlos Syndrome? The simple answer is you need to be aware because most doctors aren't.

If you suffer with joint pain, fatigue and are hypermobile you may have EDS and not even know it.

EDS is a genetic connective tissue condition that is a multi-systemic syndrome.  That means if affects just about every part of your body, you skin, your joints, your muscles, ligaments and tendons, your internal organs and gastrointestinal tract.  Everything!  I causes pain, disability and the vascular type can be fatal.  There is no cure.

EDS is invisible.  You can't see it and it doesn't show up on blood tests so it's very difficult for doctors to diagnose it.  Getting a diagnosis is especially challenging because most doctors do not have current information about it.  I recently spoke to a doctor in Accident and Emergency.  He said he knew all about it, then he quoted information that was inaccurate and at least 10 years out of date.

Doctors are taught about the extreme symptoms, the super stretchy skin, the permanently dislocated joints and the fatal aneurysms of the vascular type.  They are told that EDS is one of those rare diseases that if they ever see a single case in their career, they will never see another one.  It's no wonder they are reluctant to diagnose EDS!

I have hypermobility type, it's the most common type and it's diagnosed by the presence of hypermobility and pain.  Some people are naturally hypermobile and are perfectly healthy but if the hypermobility causes pain and soft tissue injuries then EDS may be diagnosed.

The Beighton Scale is often used to diagnose EDS but it only assesses a few joints and was never meant to be used as a diagnostic tool.  This means that some people are told they don't have it because they don't score enough points.

I am very hypermobile in my ankles and shoulders but as they are on the scale they don't count and I was told I didn't have EDS, but when I was examined by an experienced doctors at The Hypermobility Unit in London I was diagnosed.

EDS also causes many other problems, which makes it difficult for doctors to diagnose us.  How can we have so many things wrong with us?  We must be hypochondriacs!

EDS patients can suffer with dizziness and fainting when we stand which is caused by Postural Orthostatic Tachycardia syndrome.  EDS patients suffer with chronic pain from partial dislocations, bursitis and muscle spasms, we injure ourselves easily, we might be clumsy and we bruise easily too.  Some patients suffer slow gastric transit, nausea, constipation and even gastrointestinal failure.  Basically think of a body part, if there is collagen in it then EDS can affect it.

There are several other kinds of EDS, including classical type which causes skin problems and the vascular type which sadly can be life limiting.  It can affect people in different ways at different times. One day you may see an EDS patient in a wheelchair, the next day they can be walking.  They aren't faking it or doing it for the attention, they are struggling with a complex condition and doing the best they can.

So why should you be aware of EDS?  Because more research needs to be done to help people with this complex and incurable condition and it's not as rare as doctors might think.  For a start, it's genetic and there is a 50% chance the children of an EDS patient will also have EDS.

Perhaps you know someone with ME, CFS or Fibromyalgia who is hypermobile and fits the EDS profile?  Being aware of EDS can mean getting the right diagnosis and that might just change their life.

If you want to know more about EDS visit the Ehlers Danlos Support UK website.

No two zebras are alike

If there's one thing that I've learned from my Ehlers Danlos journey is that no two zebras are alike.  We all different, sometimes VERY different.  So that led me to question why is the advice always the same? We might have the same genetic cause for our symptoms, defective collagen, but how that affects us can range from having joints so loose they are permanently hanging out of their sockets, to muscles working so hard to keep joints in place that they are permanently in spasm.  There are people who can live a relatively normal life and others who suffer life limiting complications.  There is no one size fits all solution, so why do medics always give the same standard advice?

I don't envy the doctors dealing with us zebras.  We have so many complex problems that it's difficult to know where to start, so most don't want to get involved.  Even consultants discharge us back to our GPs because they don't know how to deal with us.

I went to Stanmore's rehabilitation course hoping for some understanding but what I found what the same generalised advice that didn't really fit my experiences or capabilities.  I didn't really learn very much apart from that I'm much sicker than I thought I was.  I thought I could manage and I did manage to a certain extent but by the time I'd got up, washed, been to the restaurant for breakfast and made it to stretch class I was done in, and the day hadn't even started.  And the staff wanted me to do MORE!  I gave it my best shot, buoyed by stories of people arriving in a wheelchair and walking out three weeks later practically cured, but the opposite happen to me.

Pacing will allow you to do more, they said.  A social care package is not the answer to all your problems.  If you can't do all the ironing in one go then iron one shirt at a time.  This would be good advice if getting the ironing board out didn't cause me so much pain that I wouldn't be able to iron a shirt.  They didn't consider how a social care package actually allowed me to pace.

When you're having a flare up don't stay in bed all day, get up, do your physio, pace your activities. For me a flare up is when I can't get out of bed!  The alternative to staying in bed is face planting on the bedroom floor because I haven't got the strength or the energy to walk to the bathroom.

Do pilates, it's good for you.  Done that, made me worse.  It was really cool but holding pilates poses when you have muscle spasms makes you have more muscle spasms.  After three one to one sessions I was in severe pain for three months.  Not exactly a solution.  What about tai chi?  For someone with POTS who can't stand without walking aids?  It's something I've always wanted to try but my shoulder is so unstable it goes clunk just drinking a cup of tea.

If you think physio is going to make you worse then that's called catastrophising, according to the rehab handbook.  It's negative thinking that you need to change.  Really?  So if you think that hitting your thumb with a hammer is going to hurt you need to change your negative thinking?  Will that stop it hurting?  Hmm, perhaps it doesn't always work like that.

Chronic pain is not caused by physical injury. Any injury will have healed after a few weeks so it's down to faulty pain signals or an illusion because you're overreacting to those signals, like the Lorimer Moseley video.  So when I sprain my ankle and it still hurts three months later is it because of 'chronic pain', my nerves sending out the wrong signals that the brain interprets as pain, or is it because my ligaments are too loose and I spray my ankle almost every day so it never actually healed?  To me that makes a whole lot more sense because I don't overreact to pain and I'm not afraid to move because of the pain.  Doing stuff just makes me hurt more. I need to find a way of moving that doesn't hurt instead of being told it's all in my head.

I told the Stanmore team that being in a swimming pool triggered severe symptoms but it was mandatory to have a pool session.  I love the water and I trusted the staff so I went in the pool, I spent a few minutes in the water and it triggered a severe flare of symptoms.  I was frustrated that I had to make myself ill to make them believe what I said was true and not just 'negative thinking'.  I was even more frustrated when the flare up became so severe that I had to leave the course half way through.  I felt like I had failed but on reflection it was the team who had failed me.

I have EDS, I know these things help some people with EDS but unfortunately they don't help me.  I need something different but there isn't anything different.

Something has to change.

I have tried to do things their way but I didn't fit their solutions so now it's up to me to find solutions that fit me.  I know I'm not the only one, like I said, we're all different but it would be good if the medics started to listen to the patients rather than just handing out standard advice due to the name of their condition.  Research needs to be done into why we feel pain so we can learn what to do about it rather than just expecting everyone to do physiol, take painkillers and learn to live with it.

Sam's Challenge

I am very proud of my nine year old son, Samuel. He wanted to raise money for Ehlers Danlos Support UK  so he could help other people like me with EDS.

Samuel loves loom bands and he has challenged himself to make a giant loom band 500 meters long!

I set up a Just Giving page for him and he's already on his way to meeting his target of £150.  He's been working very hard on his loom bands and has already made a band 80 metres long.

If you would like to support Sam's challenge please visit: 

https://www.justgiving.com/SamsChallenge

Sam will need around 75,000 looms bands to complete his challenge.  If you would like to donate any unwanted loom bands please email clair@dunmani.co.uk

Thank you for your support!

An open letter to David Cameron

In the lead up to the general election I've been thinking about who I should vote for.  The leaked Conservative party benefit options got me very worried because it could mean financial hardship for my family simply because I am too ill to work.

I understand the need to make budget cuts but penalising the chronically ill and the disabled is unfair and a false economy.  I got quite angry about it so to vent my frustrations I decided to write an open letter to David Cameron.

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Dear David Cameron

I wonder if I could ask you a question.  Why should I vote for you?

 

My name is Clair Coult, I am married with three children, my husband works full time but I am unable to work due to being chronically ill and disabled.  I suffer with a rare and incurable genetic condition called Ehlers Danlos Syndrome - Hypermobility Type, I also have a condition called Postural Orthostatic Tachycardia Syndrome and an autoimmune condition called Sjogren's Syndrome.  Every day I suffer with severe joint pain, fatigue, tachycardia and a whole host of debilitating symptoms.  I am virtually unable to walk but with the right medical, social and financial support I can manage my symptoms, have a better quality of  life and I can contribute to our society in my own small way.

The problem is it is very difficult to get the support I need.  The NHS has repeatedly failed me.  I was misdiagnosed and mistreated for 24 years.  I had to research my own health problems and pay privately to get the correct diagnosis.  I have also struggled to get any support in managing my condition on the NHS. 

In 2013 I was discharged from A&E in severe pain and considerable distress.  I was told to discuss my problems with my consultant.  The waiting time to see my consultant was 22 weeks.  I could not get an earlier appointment.  I paid to see a private consultant and I was seen within 11 days.  It cost £300 and I was given treatment that managed my severe pain. 

My consultant said I need extensive physio but NHS policy means I can only get 6 weeks treatment on one body part, then I have to wait another 8 weeks to be referred again.  This is crazy! 

When my consultant writes to my GP it can takes weeks, sometimes months before the letter is processed and anything is done about it.  This causes an unnecessary delay in my treatment and prolongs my suffering.  This is not acceptable.

My GP is under pressure to reduce referral costs so she is reluctant to refer me to people who can help me manage my conditions and give me a better quality of life.  This means I either go without support or I have to pay privately for consultations and treatment.  This is not acceptable.

I have to pay for my own prescriptions, annual sight tests (essential due to the risks of my medication) and dental treatments.  I purchase a pre-payment prescription certificate but it costs me £104 a year and I still have to pay for my necessary vitamins, supplements, compression stockings and treatments.  My dental treatment costs are high due to the damage that Sjogren's syndrome does to my mouth.  Dental bills often cost several hundred pounds per year.

 

I also have to pay for disability aids and equipment.  I have an NHS manual wheelchair but I cannot push it myself so I have had to pay £600 for a mobility scooter and £500 for a second hand electric wheelchair for the privilege of moving around independently.  I also have NHS crutches but by using them I risk damaging my unstable joints so I have had to pay £90 for a more suitable pair of crutches. 

I have been assessed as needing a stair lift but because my husband is in full time employment we would have to pay £9,000 for one.  I was loaned a bath lift by Occupational Therapy, essential for my safety when bathing, but it did not meet my needs.  The most suitable bath lift would cost me £600.  We cannot afford to pay for either a stair lift or a bath lift without getting into debt of nearly £10,000.  I could use my DLA lower rate care money but it would take me over 8 years to save up.  This is not acceptable.

I need support to manage my personal, social and domestic care needs but cuts to the local authority budget mean they cannot afford to meet my eligible needs as outlined in Fair Access To Care Services.  My revised care plan was very limited and basically treated me like a prisoner.  I was only allowed to leave the house for 2 hours a week, I could only do supermarket shopping on the internet, not at the local shops or market, and I was only allowed three hours support a week with all domestic chores (cleaning, shopping and laundry) for a family of five.  They expected my husband to work full time, commute 50 minutes each way to work, do all the household chores, laundry and shopping, and also be a full time carer for me and our three children.  That is an impossible task for one person. 

I have been lied to and bullied by social workers and last year it took seven months of fighting with my local authority for me to retain my care package.  I had to seek the help of my MP, research policy documents and put in a Freedom Of Information request regarding a policy that was quoted by several social workers but the policy never actually existed.  The assessments were not about supporting me to live independently and meeting my eligible needs, they were about reducing my care package and cutting costs as much as possible.  The stress and effort involved caused my health problems to significantly deteriorate.  This is not acceptable.

I claim Employment Support Allowance and due to the severity of my disabilities I have been placed in the Support Group, but I am concerned that in the future I will be unable to claim because my husband works full time.  Due to the high costs involved in managing my disabilities the loss of ESA would leave my family in financial difficulty.  This is not acceptable.

I currently claim DLA but I am also concerned about being migrated to PIP as the assessment does not take into consideration the complex and variable nature of my health problems.  I have already had to give up my Motability car because I didn't know if I would qualify for PIP and we couldn't afford to be without a suitable vehicle.  Ehlers Danlos Syndrome is a variable and often misunderstood condition.  Sometimes I can just about walk 20 metres, sometimes I can't even stand up.  How far I can walk cannot be answered by a tick box because every hour of every day is different. 

Ehlers Danlos Syndrome is also rare and I have to travel 150 miles to London to see my consultants as local doctors do not have the experience or knowledge to help me.  This can cost up to £200 in train tickets alone, plus my husband has to take unpaid leave from work to take me as I am unable to travel on my own.  If you take away my mobility support I will be unable to attend the essential medical appointments that help me manage my conditions.  This is not acceptable. 

I understand that in this economy cuts have to be made but cutting NHS, social care and disability benefits is false economy.  You are punishing the people who cannot help themselves, through no fault of their own. 

If you deny me access to adequate medical and social care my health will deteriorate to the point where I will need 24 hour nursing care.  This will cost the government significantly more than supporting me to live independently with my family.

I am not alone in this situation.  There are thousands of chronically ill and disabled people like me struggling for help and support, and I think I can speak for them when I say our lives are challenging enough as it is without having to fight for the support we need to do the things you take for granted.

So considering my situation, could you please tell me why should I vote for you? 

Are you going to do anything to support chronically ill and disabled people like me? 

Yours sincerely

Clair Coult

Pacing in the 'real world'?

The last two weeks have been extremely busy with unforeseen circumstances bringing huge challenges. My health hasn't been so great and life hasn't so much thrown a spanner in the works, it's more like life has chucked the whole toolbox in for good measure.

The result? I am beyond exhausted!  I'm in pain, I'm hypersensitive to everything, I'm bad tempered and generally not my usual perky self.  It's times like this that I remember the all the gems of advice about pacing.

• If you are in pain then you've done too much and you should have stopped already.

• Do something for 5 minutes and take a break, then come back to it.  

• Delegate.  Ask friends and family to do it for you.

I've always found it difficult implementing that advice.  I understand what it means but my life always seems to have other plans.

My son has mild asthma.  It doesn't usually bother him unless he has a cold or hayfever.  On Tuesday he started coughing.  He was coughing so much he couldn't actually stop coughing.  We gave him his inhalers but they didn't make any difference.  I tried to call the doctors but despite telling them my 9 year old son was struggling to breathe the first available appointment wasn't until half past three in the afternoon.  My PA was with me so she took us up to A&E.

The hospital staff were reluctant to treat my son because his only symptom was a cough.  Oxygen sats were normal, he had no wheeze and his chest was clear.  They gave him a nebuliser anyway and he made a miraculous recovery.

Wednesday morning and my son was coughing non-stop again.  His inhalers didn't help so I telephoned NHS 111 who called an ambulance.  The crew decided to take him in for treatment but I had no PA with me so I had to go on the ambulance with him, and that meant leaving my mobility scooter at home and walking with my crutches.

I can't walk very far, it's exhausting, painful and leaves me feeling weak and dizzy.  I should have paced, I should have used a wheelchair, but I had no option.  I couldn't sit down at the nurses station while I stood in pain for 10 minutes while my son was booked in because there were no chairs.  I had to walk around to the childrens examination rooms because there were no wheelchairs.  I was in pain and broken but I had to stay alert, communicate clearly with the medical staff and most importantly care for my son who was tired, upset and in pain.

My son was given a nebuliser and we waited 90 minutes to see a doctor who declared he had a cough (no shit Sherlock!) and he told me to give him cough medicine.  My son was still coughing a lot, he couldn't speak more than two words without coughing.  None of my friends or family were available to give me a lift home from the hospital so I had to stand and wait outside for a taxi to take us home.  I leaned against the wall so I didn't fall over.  POTS makes it very difficult to stand still in one place but there was nowhere to sit and I was too exhausted to pace up and down.

I was running on adrenaline, which is never a good thing.  It always catches up with me and makes me pay back with added interest.  We got some lunch but my son was still coughing non-stop.  I telephoned the Asthma UK helpline who were very concerned by his coughing.  They advised me to phone another ambulance and take my son back to hospital and request that he be put on steroids because he was at risk of having an asthma attack.

I knew I should have been resting but there was no-one else to help out.  My husband was at work 30 miles away, my PA arrived just before the ambulance but I needed her to be at home for when my other two children got home from school.  I spent another three hours at the hospital and my PA brought us home with the reluctantly prescribed steroids and the advice to put my son on antihistamines.

Thursday came around and my son was still very poorly.  I phoned the Asthma UK helpline again and the nurse advised us to see our GP because my son needed a peak flow meter, antihistamines and possibly more steroids.  I managed to get an appointment at 5:30 that evening.  I was eventually seen at 6:10.  The GP claimed the asthma nurse was just 'reading off a screen' and he prescribed cough medicine.

Friday should have been a day of resting but the primary school had planned a training day so I had my two youngest children at home with me.  Thankfully the medicines were helping my son and his cough was much improved, even though he was still feeling quite poorly.  I had a visit from my sister and nephew, which was nice but even that left me feeling weak and drained.

Now it's the weekend and I'm running on empty, but I still have my regular chores to do.  The laundry doesn't do itself and if it's not done by Monday my cleaner and PA can't sort, iron and put it away, that means no clean school shirts or work shirts.  The family still need to be fed, shopping lists need to be made, school dinner moneys need to be paid into the poorly designed Squid website, PE kits need to hunted out, shoes need to be cleaned etc. etc. etc.

I am a complete failure at pacing but I'm not sure how I could have paced the week I had.  You can't take a break from waiting in a hospital cubicle with a boy who can't stop coughing.  You can't stop and sit down when there are no chairs in the immediate area.  You can't delegate when you're on your own with no-one to help you.  You can't always rely on family and friends because they have work and personal commitments, and social services can't afford to give me full time support.

The past week has been a little more extreme than most weeks, but it's not a rare occurrence for me to be pushed beyond my limits.  This coming week I have to travel to London to be see by Prof Hanna at the Channelopathy clinic at the National Hospital for Neurology and Neurosurgery, the week after I have a dentist appointment and an ENT appointment in Sheffield, then the children break up from school on Good Friday and they are off for the next two weeks.  I love them to bits but they have the uncanny ability to kick off as soon as I try and grab a quiet five minutes to myself.

So pacing... yeah, it would be great if I actually had the support to do it but in reality it just isn't going to happen!

Looking after number one

From past experience physiotherapists are not my best friend. Their well meaning advice has unfortunately lead to more pain and suffering rather than better health and recovery, so I'm always a little nervous when I get referred to see someone new.

Today I met a wonderful physio, who for the first time in my life recognised what could be causing my pain. My muscles don't relax after being contracted. They stay tight long after the exercise or movement has been completed, despite me being in a physical and mental state of relaxation. This explains a lot!

My EDS consultant, Dr Cohen, thought it may be beneficial to have trigger point therapy on my neck as I suffer with very painful muscle spasms. The physio I saw today found a trigger point and tried to release it but she noticed that my muscle remained tight, and it was still tight several minutes later.
At this point I explained the problem I'd been having with my hands. A couple of years ago when I was investigated for Chiari malformation (which thankfully I don't have!) I showed the neurologist how if I grip something tightly my hand doesn't let go. She didn't know what it was but later wrote to my GP saying it was myotonia, which was a rare complication of EDS. I later discovered that it is not a complication of EDS and I asked for a referral to see Professor Mike Hanna at NHNN in London at his Muscle Channelopathy clinic. I have an appointment there next month.

Because my muscles do not relax properly the physio thought that trigger pointing may not be so beneficial so she showed me an isometric exercise for my knees to maintain the strength. It was a simple exercise that I had no trouble completing but after doing it the physio noticed that my muscle was still contracted. I was laying on my bed, comfortable, warm and safe, physically and mentally relaxed but my right thigh was tense. The penny dropped. This is why I feel muscle pain around my joints. The muscles aren't behaving as they should and that's probably why I'm ending up with trigger points which cause even more pain.

We had a great discussion about what I can do to help myself. I've always found heat beneficial so the physio recommended using hot baths and my wheat bag for relief. We also discussed the possibility of muscle relaxants. I have a prescription for diazepam for my neck spasms but it's only for occasional use as tolerance is an issue with diazepam.

I always get confused about the conflicting advice I've been given but the physio told me I need to put the past behind me and start looking after myself. I need to be more aware of my posture and avoid hyperextending and subluxing my joints. I also need to be aware of how activities affect my pain levels and not push myself to the point of pain. I'm not doing myself any favours my running myself into the ground.

I asked the physio what could cause my muscles not to relax properly and she said it could be fibromyalgia. I told her about my argument with a rheumatologist who dismissed all my complaints as fibro and told me to take gabapentin and do more exercise. She said that gabapentin and pregabalin won't help me because I don't have nerve pain and that exercise doesn't help most people with fibro.
I now understand a little bit more about the cause of my pain it's all starting to make sense. For many years I have described my pain as feeling like every muscle in my body is tense, even though I am relaxed. It's taken over 20 years for someone to pick up on it and I'm very glad they have. I understand now why the rehab course at Stanmore make me sicker, not better. The physio said that stretching would not help me, you can't stretch tight muscles, it would only stretch the already weak and over stretched ligaments and would provide no benefit at all. My goal now is to listen to my body and not push it to the point of pain because I that will only lead to more trigger points and more disability.


So now I have a good excuse for taking a nice relaxing bath - on doctors orders! :)