Tuesday, 31 March 2015

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.


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

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