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ThereForME

 #ThereforME is a campaign started in mid 2024 by two carers of pw severe ME/Long Covid calling for the NHS to be there for people with ME.  This year they plan to focus on building MP support in Parliament, safe care from the NHS, and accelerated treatments via the NHS.

They are on the government’s “task and finish” group, charged with finalising the new ME delivery plan. They’ve published the six things they want to see in the delivery plan for ME but they want to hear your views on what is needed.  Do  these six things resonate? What are they missing? What would you most like to see in the plan? You can let them know through their suggestion box
Here is a summary of what they are asking for:

 

               i.  Strong action on patient safety
First and foremost, we want a delivery plan that promises strong action on patient safety. We’re calling for the delivery plan to include a commitment to an audit of patient safety in NHS services for ME, including mechanisms to safely manage Severe ME. This is critical to providing a baseline for measuring progress on patient safety.

In the meantime, clear steps are needed immediately to address the gaping holes in care for those most severely affected, starting with the development of national standards for the care of people with Severe ME.

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              ii  Government as a catalyst to accelerate research
The public consultation called for ring-fenced public funding for biomedical research.  We’d like to see the delivery plan position the UK government as a catalyst, committing to work with partners to leverage additional research funding and build a coalition to accelerate research and treatment.

 

                iii  Doing more with the tools we already have
The delivery plan should acknowledge that, while transformative therapies will require research, more can be done with the tools already available. We’d like to see the establishment of a clinical taskforce to create consensus guidelines for the treatment of ME, including use of off-label therapies and repurposed drugs. (e.g. building on the work in the US). This could provide better care in the short term, while working towards the longer-term training and development of specialist clinicians to provide holistic care. Ultimately, we’d like to see these clinicians working as part of a new specialty structure for ME and other infection-associated chronic conditions (IACCs).

We’d also like to see a delivery plan that positions NHS care for ME at the forefront of technological innovation, supporting the uptake of tech-enabled solutions for remote investigation and monitoring of people with ME (particularly those who are housebound), as well as their participation in research and clinical trials. 

 

                iv  Bolster care in the community
More widely, the plan must also address what can be done to strengthen care in the community. Their survey found only 4% felt supported by the NHS to manage their symptoms at home.

This is particularly critical for those most severely affected who may otherwise be forced into hospital. We’d like to see Severe ME included in the criteria for NHS Continuing Healthcare (CHC) funding, alongside a clear plan of action to strengthen community care, taking learning from other models such as Macmillan nursing.
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              v.  Institutional ownership and resources
We believe the plan should include a commitment to establishing a Centre of Excellence for care and research, including development of a National Registry to provide much-needed leadership and clinical expertise, while acting as a focal point for research, clinical trials and the development of treatments.
Resources are needed for the education of healthcare workers, many of whom have received little to no training on ME with resources that are carefully developed, high quality and informed by patient voices.

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                vi.  Clear targets and accountability
Finally, we’d like to see a delivery plan with clear and ambitious targets. E.g. a deadline for 100% compliance with NICE guidelines.  It’s also critical that the delivery plan outlines clear mechanisms to demonstrate how progress in implementation will be led, managed and measured and by whom. 

 

See
https://www.thereforme.ukhttps://www.thereforme.uk/p/a-delivery-plan-thats-thereforme

and as a reminder, here is the link to the interim plan:  https://www.gov.uk/government/consultations/improving-the-experiences-of-people-with-mecfs-interim-delivery-plan/my-full-reality-the-interim-delivery-plan-on-mecfs

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