The Lived Experience of Severe ME
(voted one of the top 50 ME blogs on the internet 2017.)
Now is the Time : to say what choices you want.
Now is the Time :
to say what choices you want.
Jan 10th 2011
PLEASE REPOST WIDELY
The Government's White Paper, Equity and Excellence: liberating the NHS sets out proposals which envisage a presumption of greater choice and control over care and treatment, choice of treatment and healthcare provider becoming the reality in the vast majority of NHS-funded services by no later than 2013/14.
In other words this is a rare opportunity for people with ME to give an account of what choices they want to have.
Stonebird is proud to have been a participant in drafting “Now is the Time , to say what Choices you want” , a comprehensive reply to the White Paper , “written by patients for patients”, especially people with Severe ME.
"Now is the Time" asserts the views concerns , bio medical needs and choices that people with ME want , not only in diagnosis, but right across the board, including treatment, and social care.
"Now is the Time", gives voice to all those who find that :“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 honored and the patient voice heard loud and clear.”
Urgent : replies to the Government White Paper need to be in this week. There is still time to respond ! We urge you : “Let your voice be heard loud and clear the more who reply the stronger the message is.”
How To Take Part
Download the response document "NOW IS THE TIME" from Stonebird :
Stonebird 27th July 2017 Sir Andrew Dillon, Chief Executive, NICE Dear Andrew Dillon, Re : Myalgic Encephalomyelitis I have cared full time, for 25 years, for my wife who has a diagnosis of Very Severe ME, my Nursing Standard article "Supporting people with severe myalgic encephalomyelitis" is referenced by NICE in the original 2007 guidelines. In 2015 I was third place finalist, BJN, Nurse of the Year, for which I received an award specifically for my work in raising awareness of and advocating
for people with Severe ME. I was Secretary of the 25% Severe ME Group charity for many years and represented the Group at the Gibson Parliamentary Inquiry. In February the Joint Commissioning Panel for Mental Health document published Guidance for Commissioners of services for people with medically unexplained symptoms – practical mental health commissioning, which misinformed Commissioners that Myalgic Encephalomyelitis is a Somatoform, mental health disorder. The response, in a letter to me…
Joint Commisioning Panel for Mental Health has recently published
for commissioners of services for people with medically unexplained
symptoms, specifically listing Myalgic Encephalomyelitis as a "Functional Somatic Disorder". This
is not the first time that an incorrect reclassification has been
attempted. In October
attempt was made to have ME ‘unofficially’
reclassified, as a mental disorder in a U.K adaptation of a WHO
publication, the ‘WHO Guide to Mental Health in Primary Care’, developed by the Collaborating Centre of the Institute of
Psychiatry, London and included under the classification F48.0
After a reprimand from the WHO, an erratum was eventually issued,
acknowledging that the
anyone wishing to challenge this report, the following may be of
Encephalomyelitis (ME) has
by the World Health Organisation since
as an organic neuro…
Stonebird Greg Crowhurst Aug 30th 2017 On July 27, I wrote to Sir Andrew Dillon re Myalgic Encephalomyelitis. This is NICE’s reply, dated 29th August. I have added the questions I asked and made some brief comments. Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy):
diagnosis and management (CG53), Sir Andrew Dillon has asked the corporate communications team to respond on his behalf. I appreciate that this is an important matter for you and I have addressed of your questions in turn below. In March this year we advised you by email that we were unable to comment on how another organisation interprets our guideline and this is still the case. If the JCPMH have referred
to our guideline in a different way then you would need to take this point up with them directly, NICE is unable to get involved. Comment: Despite my best efforts, letters to the Department o…