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

A little communication goes a long way

My battle with a dry mouth and swallowing issues continues.  After my disastrous ENT appointment where I collapsed after being bullied into having Lidocaine sprayed up my nose I went to see the top ENT at Bassetlaw Hospital.

I was prepared for the appointment, I had written down my symptoms so I wouldn't forget anything but all he wanted to do was send me for the barium swallow test.

I asked why and he said because your GP has asked me to.  I tried to explain that I only had difficulty swallowing dry and textured foods because they stick in my throat because my mouth is dry.  He said I needed to have the test done to check my swallowing.

I pointed out the difficulty I would have going without anything to eat or drink for 11 hours.  He looked confused and said I didn't have to.  I explained the appointment letter letter clearly stated no food or drink after midnight the day before the test.  My test was booked for 10:30 and would take 30 minutes, hence no food or drink for 11 hours.  He said that wasn't the case at all.  He asked the nurse and she said they were sending out a generic letter with that information on for all procedures, which isn't exactly helpful to people like me who need to stay hydrated.

I showed my long list of symptoms to the ENT and he said I'd have to discuss those with my GP.  I politely told him that I was here to consult him about those issues!  He decided to examine me and he asked if he could look in my throat.  Instead of putting a camera down my nose he held my tongue down with a strip of gauze and looked in my throat with a small mirror, similar to the kind dentists use.  It was quick, painless and gladly there was nothing wrong with my vocal chords.

Now why couldn't the other doctor have done that?!?!?

The ENT still wanted me to have the barium swallow test.  I still failed to see the point and told him I didn't want to have any unnecessary tests that would delay and investigations and treatment into the real cause of my problems - my very dry mouth.  He said what investigations?  So I had to show my hand.  I asked him directly about Sjogren's Syndrome.  He agreed that many of my symptoms were consistent with Sjogren's, although he said my low grade fevers and weightloss were not associated with the condition.  The ENT said he would refer me to his colleague who would look into it for me, and he would let him decide if I needed the barium swallow test or not.  Yeah, he wasn't going to let go of that one!

Considering my run of bad luck with consultants from Bassetlaw Hospital I decided to see if there were any private consultant I could see instead.  It's an expense we can't really afford, but when it comes to my health we can't afford not to.

I came across an article in The Guardian about Sjogren's Syndrome and it gave the helpline number for the British Sjogren's Syndrome Associaion  so I gave them a call.  I spoke to a very nice lady who was interested in my story and she recommended a specialist called Dr Elizabeth Price.  She recognised my symptoms, including the low grade fevers and weight loss, and she said it's surprising how many Sjogren's patients also have Ehlers Danlos Syndrome and POTS.  I thanked her for her advice and I have booked an appointment to see Dr Price.

Communication is very important.  So is getting to speak to the right people.  I just wish the NHS would actually LISTEN to me when I'm trying to ask for their help.  Ignoring me and exclusively going by what a GP has written in a letter after seeing me for two minutes is never going to give the most accurate story.  I'm just grateful that money buys time in private appointments and the more time you have the more chance you have of getting someone to listen.  I'm also grateful for the BSSA's helpline, it could mean I've found the missing piece in the jigsaw.

I'll keep you updated!