Below is the letter I have just emailed to my MP, Ann Coffey. Please, if you can, write to your MP, and if you are too ill to do so, please ask a friend or relative to do so on your behalf.
We need funds.
We need research.
We need specialist care, in our homes.
And we need it now.
Together, we, the #MillionsMissing are incredibly powerful.
Change is a coming. I can feel it.
Just like change came for HIV, Aids, MS.
Hang in there, change is a coming.
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MY LETTER TO ANN COFFEY, STOCKPORT MP.
Dear Ann,
I am writing to ask that you support Carol Monaghan's Early Day
Motion 1247, in support of ME Awareness Week.
As your constituent, this is really important to me, and I would
be very grateful if you could sign and lend your support to this EDM.
I know first-hand the hidden, living hell that a Severe ME Patient
endures; Severe ME may not be a terminal illness but it takes people’s
lives...I know, because it took mine for several years.
For the best part of 2 years I was little more than a breathing
corpse. All I could do was lay in a blacked-out room in constant pain,
unable to talk, walk or tolerate a glimmer of light. I had to be
spoon-fed, watered, washed, dressed and nursed by my husband and our mums, just
like a baby. At 5 10 I
weighed just 6.5 stone. I was literally wasting away before my family’s
eyes.
But, here’s the thing.
I am one of the
lucky ones.
- I had 2 x 6-week admissions to a
specialist Severe ME Unit…Top Neurologist and ME Specialist, Professor
Findley’s amazing NHS unit in Romford, Essex.
- I was incredibly lucky to have the support of the lottery funded Stockport Specialist ME Outreach Nurse Service upon discharge…Specialist ME Nurses who visited me regularly at my home for over 3 years, and who were always at the end of the phone to support my Carer Husband, and who would visit me in my home, whenever a setback or relapse hit. I was so proud that we had such a domiciliary service in Stockport - it was the envy of many PCTs across the UK.
- I receive weekly B12 injections, a common
treatment for ME in USA, but only because I have Professor Findley as my
ME Consultant, supporting me and requesting these be prescribed from my GP.
I am living proof that Severe ME Patients, can regain some quality
of life, but only if we receive the right treatment, the right care, the right
support, at the right time, from the right Severe ME Specialists.
But....
- Professor Findley’s NHS unit is now closed.
- The lottery funded Stockport Specialist ME Outreach Nurse Service, which offered not just a couple of home visits but continuous domiciliary visits to Severe ME patients, for as long as they needed it, is now no closed.
So those patients who follow in my wake, do not have access to
Severe ME Specialists that I did.
And why don’t they?
A complete, utter and shameful lack of funding, that’s why.
The very limited number of NHS ME clinics that do exist, have to
concentrate primarily on those ME patients who can travel to/from their clinics
regularly…i.e., the Mild & Moderate ME Patients – terms in themselves
utterly patronising and insulting. There is nothing Mild or Moderate
about any grade of ME.
Unlike other physically disabling illnesses, HIV, Cancer,
Heart Disease, Multiple Sclerosis where Patients receive compassion,
understanding, help, support, guidance, treatments. Severe ME Patients do
not.
At best, Cognitive Behaviour Therapy and Graded Exercise
Therapy are forced upon patients, making patients worse.
The way ME Patients are mistreated, ignored, patronised,
disbelieved is shameful, shocking and scandalous.
So, today, I am asking you, as my MP, to support this EDM and
fight for ME Patients across the UK.
We need funds.
We need research
We need specialist care.
And we need it now.
Thank you,
Kind regards,
Yours sincerely
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