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

Sunday, 22 March 2015

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!