Hi,
Many of you have now watched my short video on social media, this video was in reaction to the email received from DHSC in response to my letter relating to ME Foggy Dog’s NHS Protocol campaign. The response is as helpful as those received from the Health Ministers/Departments in Wales and Scotland.
Here is the email.
Dear Ms Callow,
Thank you for your correspondence of 28 July about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I have been asked to reply, and I apologise for the delay in doing so.
I appreciate your concerns.
The Government is committed to improving care and support for people with ME/CFS. It recognises how severe the symptoms can be, as well as the significant impact they can have on a person’s quality of life. It wants a society where every person, including those with one or more long-term conditions, can receive high-quality, compassionate care, and it will change the NHS so that it becomes not just a sickness service, but able to prevent ill health in the first place. This will help us be better prepared for the change in the nature of disease and allow our services to focus more on the management of chronic, long-term conditions.
The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR, together with the Medical Research Council, is funding the world’s largest genome-wide association study of ME/CFS. This £3.2million study, called DecodeME, will analyse samples from 25,000 people with the condition to search for genetic differences that may indicate underlying causes or an increased risk of developing it. By building a greater understanding of the underlying mechanisms of ME/CFS, this will support the development of potential treatments in the future.
In addition, the Department is in the process of finalising its response to the consultation on the ME/CFS interim delivery plan that took place last year. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which the Department aims to publish at the end of the year. The plan will focus on increasing research into and education around ME/CFS, as well as improving the lives of people with the condition.
I hope this reply is helpful.
Yours sincerely,
Correspondence Officer
Ministerial Correspondence and Public Enquiries
Department of Health and Social Care
I’ll let you draw your own conclusions. We need forward thinking to bring about change for M.E., this is sadly lacking in that regard. As I said in my short video, the M.E./C.F.S Delivery plan will not resolve all issues mentioned in the NHS protocol campaign. Yet, because that Delivery Plan is ‘in the making’, nothing else can be considered – it seems.
But I have to point out that I literally snorted when I read this bit –
‘..it will change the NHS so that it becomes not just a sickness service, but able to prevent ill health in the first place’.
Labour may have only been in power since 5th July but it has yet to mention COVID19 and the need for mitigations. Until it does, the amount of chronically sick people in this country will continue to rise. Obviously, they mean prevention through diet and exercise (same old, same old) and not protecting people from the nasty virus that is behind a mass disabling event. Many of these newly chronically sick people will meet M.E. diagnostic criteria. The lack of mitigations is OUR problem (at the moment) but it should be the GOVERNMENT’S. Chronic illness negatively impacts the economy according to the Government, lack of mitigations is a national act of self-harm.
Because of the meaningless responses from various Governments, I launched the next step of the NHS protocol campaign on 8th August.
‘Going local’
I am asking people in the UK to contact their regional ICB, Health Board, Health Trust and ask them to start a conversation with me about implementing the NHS protocol.
All info can be found here – ‘Going local’ (You’ll need to scroll down the page to get to the relevant section.). I have made this next step as easy to do as I can. There is an email template and contact links.
I’ve now got a couple of meetings booked in (thank you!) and I will be talking to ICBs about the need for the NHS protocol to be implemented. There are 42 ICBs in England and many more Health Trusts and Health Boards in the devolved nations. Please write to your regional healthcare organisation (via the contact details included on the ‘going local’ link above) and help me to start a conversation in YOUR region.
A conversation
This Friday, I am having an online meeting with my own MP – we will be discussing the NHS protocol campaign. I have waited nearly 4 months for this chat (election, summer break) and am hopeful that it will lead to a step in the right direction.
Paws crossed.
Sally