Schrodinger's Cripple

Sometimes I have a hard time getting my head around my illness and disability.  I've been disabled by Ehlers Danlos Syndrome for so many years that living with the constant pain, fatigue and numerous other symptoms has become normal for me.  It's only when I have to take a long hard look at my quality of life in terms of a Social Services care assessment or a disability benefits application that I realise how very disabled I am.  It's quite depressing admitting your weaknesses but it's made me realise that what people see is can be a very different picture to who I really am.

If I post a picture of my dinner on Instagram and say, "I made this, it's so yummy!" you might assume that I am capable of cooking a meal by myself.  What you don't see is the PA who took me shopping for ingredients because I can't drive or get my mobility scooter out of a car on my own.  You don't see how I had to brace my knee and walk with a crutches so I can move around my kitchen, or how much pain and fatigue that caused me.  You don't see my PA peeling vegetables or lifting heavy pans off the hob because I can't do it.  You don't see me resting on my stool because the heat from the hob has made me go so dizzy I feel like I'm going to pass out.  You don't see me pushing myself past my limits through the pain and fatigue or the muscle spasms in my hand as I chop and stir.  You also don't see after taking that picture I feel too exhausted to eat the meal I just claimed to have made.

In my head I believe that I made the meal because I planned it and I oversaw the cooking of it but in reality if I had to make it from scratch on my own I wouldn't get past the first step.  Did I just make that meal?  Yes, but not really.  It's not as simple as yes or no.

Herein lies the problem.

Physically disabled people today have to be Schrödinger's cripple - there is an expectation for you to be an awe inspiring role model, a paralympic  athlete or successful entrepreneur bravely defying your physical limitations, but at the same time to get any kind of help from the government in terms of disability benefits or social care you have to be a invalided cripple who can't wash, dress or even convey food to your mouth, otherwise you get no help at all.  Very few people can be both but just because you can do some things doesn't mean you don't need support in doing others.

I currently claim DLA, Disability Living Allowance but some time in the near future I will be migrated to PIP, which has a different eligibility criteria.  The amount of money I receive each week could drastically change, I could get nothing at all or I could get almost £60 a week more.  I have no idea which, that is entirely up to the decision makers.  This is a great cause for concern for me because I rely on that money to provide the medical care, equipment and support that is not available to me on the NHS.

I looked up the eligibility criteria for PIP.  It's all done on a points system and it's very black and white. My condition changes on an hourly basis so I find it impossible to say if I can perform certain tasks such as taking a shower or walking a certain distance because they are dependant on many variables and fluctuations of my numerous medical conditions.  If I can do something one day there is no guarantee I can do it the following day, or even the following week.

To get the enhanced rate of the mobility component of PIP you must be able to walk less than 20 metres. How far can you walk?  This might seem a simple enough question to answer but for me it quite complex.  You might see me walk 20 metres on crutches from my PA's car into the GP surgery and think yes, she can walk 20 metres, but that is not the whole story.

You don't see how much pain and fatigue that caused me, you don't see how I had to make a maximum dose of pain killers and muscle relaxants when I got home because I pushed myself beyond my limits to walk that distance.  You don't see the damage I did to my unstable shoulders by using the crutches or the pain I will suffer for the next week because of it.  You don't see how I had to order pizza that night because I was too fatigued to even make a sandwich for dinner.  You don't see how I felt too ill to do anything the following day because I overexerted myself from desperately trying to be normal and independent and walking instead of  using a wheelchair or mobility scooter.

If the decision makers decide I can walk that 20 metres I wouldn't score enough points to get the Enhanced rate of PIP mobility component.  In real terms that means losing £1,853.80 a year in benefits (or nearly £3,000 a year if they decide I can walk more than 200 metres) plus no longer being eligible for a Motability vehicle.  That is a massive loss if you're struggling to survive on benefits or rely on the Motability scheme to be able to run a suitable car and retain your independence.

Iain Duncan Smith wants disabled people to find jobs and work their way out of poverty.  He doesn't seem to appreciate that not everyone is capable of working, even with reasonable adjustments.  You might presume I can work because I wrote this blog post but it has taken me several days of short sessions at the computer to compose this.  If I were writing professionally I would be expected to produce this every single day, but even if I worked from home there is no way I could do that 5 days a week to an acceptable standard.

The government believe that working can help people with chronic illnesses but for people like me the physical stress and effort would make my condition deteriorate to the point where I would be bed bound and have very little quality of life.  I struggle with just looking after myself, never mind working enough hours to earn a living wage.  Leaving the house just to go to the shop on my mobility scooter can leave me so fatigued I can't do anything for a few hours and there are days when I'm not capable of doing anything at all - and that's when I'm well!  If I get a virus or an infection which can happen up to 6 times a year, then I could be bed bound for up to a month.  Just getting out of bed in a morning is work, never mind having a shower, getting dressed or doing a few basic household tasks.

This leaves me and thousands of other disabled people in a very difficult position.  On the surface we appear too well to need financial or practical support but we are too sick and disabled to function without support.

What we need is understanding and support so we can manage our conditions and live a happy and productive life.

What we don't need is constant scrutiny, sanctions and the withdrawal of benefits and support services by people who have no understanding of what it's like to live with a long term illness or disability.  We don't think we're entitled, we don't want to be benefits scroungers but with the right kind of help and support some of us might just surprise you and actually become that awe inspiring Schrödinger's cripple.

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