Campaign Update #6: A DHSC letter and our comment
Why we're challenging Wes Streeting to prove us right
On August 4th we sent a letter signed by 2,624 patients and carers across the UK to Wes Streeting, the Secretary of State for Health and Social Care. We also shared our policy brief with other key ministers in July.
This past Friday, we received a response from Andrew Gwynne on behalf of the Department of Health and Social Care (DHSC). We’re sharing his letter in full and our response below.
Letter from Andrew Gwynne:
Thank you for your recent correspondence to Karin Smyth, Baroness Merron and Wes Streeting about myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and long COVID, and for enclosing the policy brief Building an NHS that’s there for Long Covid and ME. I am replying as minister for public health and prevention, and I apologise for the delay in doing so.
I would like to assure you that improving health outcomes for people who live with ME/CFS and long COVID is a key part of this Government’s mission to build an NHS fit for the future.
We are committed to creating a society where every individual, including those with long-term conditions such as long COVID and ME/CFS, receives high-quality, compassionate continuity of care, with adequate support for their families and carers. We will transform the NHS into a service that not only addresses illness but also works to prevent it. This will help us be better prepared for the change in disease and allow our services to focus more on the management of chronic, long-term conditions, including long COVID and ME/CFS.
It has been a priority since my appointment to publish the response to the 2023 consultation on the ME/CFS interim delivery plan. Departmental officials are in the process of finalising the response, which I will review in due course. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish this winter.
I am very keen to meet a range of stakeholders across my portfolio. However, I hope you will appreciate that this is an extremely busy time, and I will be unable to commit to a meeting at this stage. I do, however, look forward to working with you and your colleagues in the coming months and years.
Yours sincerely,
Andrew Gwynne
#ThereForME comment:
We are surprised and disappointed that the Secretary of State for Health and Social care did not respond to the 2,600 patients and carers who wrote to him in person. It is also very disappointing that the government has not committed to a meeting with our campaign - nor to a more concrete timeline for the publication of the cross-government delivery plan.
Patients with ME and Long Covid have been dismissed for far too long: we need urgent action, not delays and platitudes. Only by listening to patients and carers can this government deliver the transformation in care that is desperately needed.
That said, it is encouraging to hear that improving health outcomes for people who live with ME and Long Covid is a key part of the government’s mission to build an NHS fit for the future. We couldn’t agree more.
We continue to call on the government to commit to much-needed ring-fenced funding for biomedical research into treatments - and to work with us to build an NHS that’s there for people with ME and Long Covid. After decades of neglect, we believe this government can be the one to finally change patients’ lives for the better. We’re challenging Wes Streeting to prove us right.
While we found the response from the DHSC disappointing, it's not unexpected. Campaigns often begin with small steps, and persistence is key. We remain committed to ensuring that the voices of patients and carers are finally heard and that real change is achieved.
This is just the beginning. Hopefully you’ll be pleased to hear that we have plans to ramp up our efforts and continue applying pressure. Stay tuned for updates as our campaign continues.
Very Disappointing. It seems to, once again, be making the patient responsible for ‘managing’ the illness rather than agreeing that there needs to be research and education underpinning everything. Managing cd, of course, make patients fit for work, their priority. I imagine he’s sent the same letter to many people advocating for chronic illnesses. Red flags everywhere!
Thank you for your campaigning work. Sadly, I also am not surprised by the response you received from the government.
I've been an ME advocate for many years and alot of the time it feels like banging your head against a brick wall.
Fine words are worth nothing. I want to see concrete action from the Labour government.
I am not hopeful regarding the future as it needs money to improve the lives of people with ME. We have a government committed to neo Liberal economics which is promising more austerity and massive spending cuts. This means that the minister is being disingenuous. He knows full well that spending cuts means that little will be done for people with ME. In discussions with a senior decision maker from my regional ICB it is clear that there is no money to make any improvements in services for people with ME.
As part of our advocacy work the ME community needs to join up with other disability organisations and the unions in opposing the austerity measures of thisgovernment.
Some people won't like my opinion but it is based in reality not hopium.