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 :
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…
and Linda Crowhurst (August 8th
2013). Synopsis Paralysis is a
symptom that is rarely highlighted in the literature for ME, yet is
found amongst the most severely ill ME population and even some of
those not so severely affected. My wife has experienced it for almost
2 decades, without adequate exploration, alongside exposure to denial
and dismissal, ignorance and neglect as well as harmful treatment. We wanted to find
out if there was anyone else with a similar experience to my wife's
or if she was a rare and very severe case. We wanted to highlight the
seriousness of this symptom and ask why it is being ignored and down
played not only by the medical profession, with its inappropriate
focus on fatigue and the psychosocial response, but also by the main
charities, none of whom, flag it up as a main symptom. This qualitative
research study indicates that there are significant others
experiencing apparently similar paralysis and that my wife is not
unique. It begs the question why…
Myalgic Encephalomyelitis, a neurological disease with multi-system dysfunction is continuing to
disappear from view, lost in a fatigue focus that does not
clinically represent the reality of this severely disabling chronic disease.
There should, you would think, be no compromise on identifying and separating Myalgic Encephalomyelitis from other conditions and recognising the
need for a full medical service with a biomedical pathway, for people with Myalgic Encephalomyelitis (ME).
This is sadly not the case and that has profound implications for those people who have ME especially the most severely affected, who are so isolated as to be almost
invisible to health services, social services and society generally, too ill to engage with them.
It is unlikely that anyone outside the situation really know what life is like for people with Severe and Very Severe ME, who
are house and or bed bound, unable to interact in a normal way and separated from ordinary life by acute environmental hy…