Thank you - powerful update on the continuing lie David Strain, the one that the NHS and ICBs and NHS England and the DHSC have any interest at all toward ME patients and the biomedical illness. Take the money away from all the totally pathetic rehab services and put it into 5 Consultant led Centres of Excellence which all can turn to for direction and right to choose. Take note Scotland - send your 2 lead internal Medicine Consultants to Bateman Horne now and get on with it before wasting ever more money on the pathetic outdated 'services' notions.
Reading the articles on this Substack, as well as the latest news on how those with M.E are currently being treated in hospital caused me to write the following email to the M.E Association and Action for M.E. It calls for them to set up a fund to provide for legal fees for M.E patients being appallingly treated by the NHS.
I know that it might not make any difference, but felt I had to write. I hope others will do the same and that it will all help to give us the NHS we so desperately need.
Dear M.E Association trustees,
With all the horrific treatment of M.E sufferers that has been going on for years, a fund set aside specifically for legal fees to fight for us is well overdue.
It may only take a few legal cases to set enough of a precedent for the NHS and government to sit up and take notice, and get their houses in order. Meanwhile, hope of change is almost non-existent in the M.E community, most of us dread seeing a doctor, or being admitted to hospital, let alone facing the inhumane treatment regularly meted out to those enduring long term hospital stays. We are treated more as criminals who are faking illness rather than the extremely seriously ill people we are.
I'm sure that if you took a poll of your members, they would support this use of a small fraction of your funds, ringfenced for this purpose.
A collaboration between charities might be advisable, to show collective strength and effort on behalf of those you represent and need to protect, those who do not have the resources to protect themselves. We need you, and all the M.E charities, to step up and put an end to this cruelty, once and for all, before any more lives are tragically lost.
Please acknowledge this request and then respond directly to me with the board's considered response to this proposal.
Thank you - powerful update on the continuing lie David Strain, the one that the NHS and ICBs and NHS England and the DHSC have any interest at all toward ME patients and the biomedical illness. Take the money away from all the totally pathetic rehab services and put it into 5 Consultant led Centres of Excellence which all can turn to for direction and right to choose. Take note Scotland - send your 2 lead internal Medicine Consultants to Bateman Horne now and get on with it before wasting ever more money on the pathetic outdated 'services' notions.
What is the template for the 'new service specification for mild and moderate' and one look at the BMJ and you will cry .. there is no hope with GPs ... they are just burnt-out sign-posters and if there is no specialist service then a GP just says their hands are tied. A quick look at the comments from 3 boring GPs at the bottom and one has to wonder why they are being paid at all. https://www.pulsetoday.co.uk/news/clinical-areas/mental-health-pain-and-addiction/gps-to-support-delivery-of-me-cfs-care-under-new-nhs-plan/#:~:text=By%20Sofia%20Lind,clinical%20committee%20and%20funding%20availability.
Excellent summary and analysis.
The so called “Delivery Plan” promised nothing, and that’s exactly what it’s delivered so far.
The research investment was already lined up before the ‘plan’ was published.
Regarding training numbers - Many of these are likely to be impacted HC members who are barely even working now. I wonder how many GPs have completed?
Suspect close to zero, as they don’t have and won’t find the time to engage with something so barely even acknowledged.
Reading the articles on this Substack, as well as the latest news on how those with M.E are currently being treated in hospital caused me to write the following email to the M.E Association and Action for M.E. It calls for them to set up a fund to provide for legal fees for M.E patients being appallingly treated by the NHS.
I know that it might not make any difference, but felt I had to write. I hope others will do the same and that it will all help to give us the NHS we so desperately need.
Dear M.E Association trustees,
With all the horrific treatment of M.E sufferers that has been going on for years, a fund set aside specifically for legal fees to fight for us is well overdue.
It may only take a few legal cases to set enough of a precedent for the NHS and government to sit up and take notice, and get their houses in order. Meanwhile, hope of change is almost non-existent in the M.E community, most of us dread seeing a doctor, or being admitted to hospital, let alone facing the inhumane treatment regularly meted out to those enduring long term hospital stays. We are treated more as criminals who are faking illness rather than the extremely seriously ill people we are.
I'm sure that if you took a poll of your members, they would support this use of a small fraction of your funds, ringfenced for this purpose.
A collaboration between charities might be advisable, to show collective strength and effort on behalf of those you represent and need to protect, those who do not have the resources to protect themselves. We need you, and all the M.E charities, to step up and put an end to this cruelty, once and for all, before any more lives are tragically lost.
Please acknowledge this request and then respond directly to me with the board's considered response to this proposal.
Yours, Helen Stout