Rethinking My Response To Andrew Gwynne MP During Last Week’s Instagram / Facebook Live

Hello,

I was unfair to Andrew Gwynne MP during Friday’s Instagram/Facebook Live and that is why I am writing this blog. I’ll admit that I skim read his letter response, received on 4th November 2024, as I am so used to getting generic replies it went in one eye and out the other. I only registered the generic paragraphs that I have received many times before from previous Health ministers. These generic responses are in part due to the correspondence team who receive many emails/letters and have to respond using templates due to time constraints. I get that. It doesn’t make it any less frustrating when I have poured my heart and soul (and valuable energy) into a campaign/project only to receive a reply that feels like a fob off.

Tip to the correspondence team – You don’t need to tell an advocate of over 10 years and manager of two social enterprises which work for the M.E./C.F.S community about the M.E./C.F.S. Delivery Plan or Decode M.E. Particularly when I have contributed to or promoted that work in the past.  You don’t need to educate me (or many in our community).

Here is the response received from Andrew Gwynne MP’s team. The original correspondence was sent by my MP on my behalf as a constituent and the manager of social enterprises in his constituency.-

Stephen Morgan MP
By email to: ******@parliament.uk

4 November 2024

Dear Stephen,
Thank you for your correspondence of 7 October to the Secretary of State on behalf of your constituent Ms Sally Callow about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

I was sorry to read of Ms Callow’s health difficulties, and I appreciate her concerns and suggestions.

I would first like to recognise the important work that Ms Callow has done to date and thank her for her ongoing interest in, and contribution to, the response to ME/CFS. I would also like to take this opportunity to assure you that the Government fully understands how debilitating ME/CFS can be and is committed to improving the lives of people living with the condition. I have been having a number of meetings in my first weeks as minister to look much more closely at ME/CFS.

We want a society where everyone, including those with one or more long-term conditions, and their families and carers, receives high-quality, compassionate care with continuity. We 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 to be better prepared for the change in the nature of disease and allow services to focus more on the management of chronic, long-term conditions, including ME/CFS.

I am grateful to Ms Callow for forwarding the NHS protocol campaign document for ME/CFS and the ME Friendly Hospital Charter, which I have passed to Departmental (Grateful it was passed along but I had already shared the document with my connections within this team – no reply received yet) officials leading on ME/CFS. The Department is also currently working with NHS England to develop an e-learning course on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. This
course involves important feedback and input from patients with lived experience. (Surely a quick online search by admin staff would have shown I created/manage my own online training company (social enterprise) over 6 years ago?! Yes, I am aware of my new competition! I know more about M.E./C.F.S education than most people – been there, DO that)

People with ME/CFS deserve the most appropriate treatment and should have confidence that the NHS can offer that treatment. I recognise that care for people with ME/CFS has varied widely and, in the worst cases, has left some people feeling that their illness is not recognised by the health and care system. We know that more research, better services and a better understanding of the condition has the potential to make a huge difference to the quality of life of people with ME/CFS.

Regarding specialised care pathways, ME/CFS services are commissioned by integrated care boards (ICBs) to meet the needs of their local populations. ICBs are not reviewed or assessed by NHS England centrally. It is the duty of clinicians to keep themselves apprised of best practice, in particular around guidance issued by the National Institute for Health and Care Excellence (I know this – it’s why I am going direct to ICBs and other regional healthcare providers).

Additionally, the Government funds research into ME/CFS through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC), through UK Research and Innovation. In 2020, the NIHR and the MRC came together to fund the world’s largest genome-wide association study of ME/CFS. This £3.2million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. Further details of the study can be found at www.decodeme.org.uk. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS. These applications are subject to peer review and judged in open
competition, with awards made based on the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

In addition, I am committed – it has been a priority since my appointment – to publishing the response to the 2023 consultation on the ME/CFS interim delivery plan. Departmental officials are finalising the response, which should come to me very soon. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish this coming winter. We recognise that there is more to be done, but I hope this letter assures you and Ms Callow that we are taking the matter seriously.
Yours sincerely,

ANDREW GWYNNE

I am grateful that my efforts have been acknowledged, when M.E. work feels like a relentless slog it can be a comfort to know I am not completely unseen by ‘the powers that be’. Quiet recognition of hard work is a great motivator when I feel like giving up (that brick wall often feels insurmountable).

At the end of the day, it is still just words and we are still waiting for any positive action to move our community forwards. However, as I stated at the start of this blog, I unfairly criticised Mr Gwynne last week and for that I apologise.

Onwards and upwards!