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
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