• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

NHS Choices White Paper Consultation

richvank

Senior Member
Messages
2,732
To those in the UK:

Simpsons, on the ProHealth board, asked me to post the following.

Rich



NOW IS THE TIME - to say what choices you want for ME.

The NHS are asking us what choices we want in our health care choices

Join us in this protest to the NHS choices White Paper Consulttion
which closes14th Jan

on StoneBird http://www.stonebird.co.uk/

Dr Speedy's Nice Guidelines Blogspot
http://niceguidelines.blogspot.com/2011/01/myalgic-encephalomyelitis-white-paper.html

This reply to the White Paper has been written by patients for
patients and is suitable for all levels of severity.

The discrimination and inequality in the current system is
unacceptable and a breach of our rights. We call for an end to this
discrimination, and our right to be involved in the planning of our
health care services to be honoured and the patient voice heard loud
and clear

We hope we have stated the views, concerns and bio medical needs and
choices we want, not only in diagnosis, but also in treatment and
social care.

We as patients feel that the Lightening Process (LP) , Cognitive
Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) is no choice
at all. We want equal access to appropriate specialists such as
neurologists cardiologists, immunologists and a fair diagnosis using
the Canadian Guidelines, with correct testing and treatment.

This is the choice we want, not harmful CBT and GET which our shown by
patient surveys to worsen condition. We condemn the Wessely school and
their vested interests, and dominance in the NICE guidelines as an
unfair representation of the facts which leads to discrimination which
is why they have been declared unfit for purpose.

The needs of the severely ill are neglected, with no home service
available often the most in need get the least service. because their
disability does not allow them to access services.

We call for equal access for the 25% of patients who are severely ill
bed and house bound who have no access to choice for ME treatment or
any other healthcare needs. Correct services need to be provide via
home visits from all specialists involved in care. Otherwise the
severely effected will continue to suffer discrimination in accessing
appropriate bio medical treatments.

Let your voice be heard loud and clear; the more who reply the
stronger the message is

Now published ready for downloading and sending with full instructions in pdf

on StoneBird http://www.stonebird.co.uk/

and also on Dr Speedy's Nice Guidelines Blogspot

http://niceguidelines.blogspot.com/2011/01/myalgic-encephalomyelitis-white-paper.html

HOW to take part

- Full instructions are in the links above incuding a sample covering letter

Download the response document via above links

Attach it or paste it into to your email

subject Severe ME choices response

send it to :

By email to choiceconsultation@dh.gsi.gov.uk

cc. us at whitepapermechoices@gmail.com so we can log the response figures


By post to :
Choice Team, 11th floor, New Kings Beam House, 22 Upper
Ground, London SE1 9BW.

Below is a sample for your email or letter let them know if you have
made additions, use bold so they can find them easily :

Dear Sir/Madam

I submit the following document for inclusion in the white paper consultation,
I have submitted research links in the document which support this
submission and ask you not to reach any decision regarding provision
of choice for ME patients
without fully exploring this evidence.

Yours sincerely,

Please Repost Far and Wide

thank you
ME Choices Team!
 

Enid

Senior Member
Messages
3,309
Location
UK
Thanks for posting richvank "the NHS asking us what choices we want" Off to pursue - too good to miss !
 
Back