DHSC Interim Delivery Plan on ME/CFS: Public Consultation Information
August 10, 2023
OPEN CONSULTATION
Improving the experiences of people with ME/CFS: interim delivery plan
The Department of Health and Social Care
“The government is committed to supporting all people living with ME/CFS. On 12 May 2022, the government announced an intention to develop an ME/CFS Delivery Plan to improve the experiences and outcomes for people with the condition.
“We are now launching a focused consultation to gather a range of views from the ME/CFS community on the proposed actions in the Interim Delivery Plan to build a picture of how far it addresses the issues most important to them and help us to identify where we need to go further.
“As the consultation survey is specifically targeting those with experience of living or working with ME/CFS, we are hoping to distribute the survey via relevant organisations and networks to reach the most appropriate audience.
“The survey will be available online at the following link and will run for a period of 8 weeks from 9 August 2023 to 4 October 2023:
Take part in the DHSC Interim Delivery Plan Consultation
ONLINE SURVEY (O4 OCTOBER DEADLINE)
EASY READ MANUAL SURVEY (30 OCTOBER DEADLINE)
“We estimate the survey will take between 20 to 30 minutes to complete. Respondents can leave and come back to complete the survey in stages by clicking on the link to the survey using the same browser.”
Announcement 05 September 2023
The Easy-read Version
The DHSC has launched an ‘easy-read' version of the consultation survey. If you complete the survey using this option – it will require manual completion and then printing before returning by post – the deadline has been extended to 30 October 2023. If you do not use this version and instead complete an online submission, the deadline remains 04 October 2023. Please also note that the ME Association and other stakeholders were not consulted about the ‘easy-read' version and the booklet that accompanies the manual survey:
“Thanks for all the very valid comments and criticisms on this latest publication from the DHSC. I have only just read this ‘easy-read' version of the booklet and survey and agree that parts of it come across as over simplistic and patronising and the choice of language that is used to describe ME/CFS – “feeling very tired” etc. – is just not appropriate in places. Many of the stock photos that have been used don't represent real people with ME/CFS. The ME Association was not consulted about the easy-read version and as it has been written and produced outside the DHSC it's going to be difficult to get things changed especially given the pending deadlines. But we will try!”
Dr Charles Shepherd, Trustee and Hon. Medical Adviser to The ME Association.
Frequently Asked Questions
1. How do I complete the consultation survey?
Use the skip and back icons to navigate through the survey. Do not use the browser back button.
Your responses will be saved whenever you click “Next”
You can complete the survey in stages providing you use the same device and browser when you come back to it.
To temporarily leave the survey, we suggest you bookmark the page in your browser and use that bookmark to the survey when you are ready. Alternatively, you can return to the survey by following the latest link shown in your browser history.
If two or more people use the same computer in a household, one person will need to complete their survey and submit it before the next person starts theirs, unless each person has a different user login.
If you are completing the survey on behalf of another person, please finish that version and submit it before providing any responses of your own.
2. Are there alternative formats and ways to print and complete the consultation survey?
PDFs
You can create a PDF of both the Interim Delivery Plan and the Consultation Summary.
To do this, click “print this page” (on the left hand side of the webpage). Then set your printer selection to “Microsoft Print to PDF” or “Save to PDF”. This will save a PDF version to your own device.
A PDF version of the consultation form will be available shortly, via: https://www.gov.uk/government/consultations/improving-the-experiences-of-people-with-mecfs-interim-delivery-plan
You should only use this to send your responses if you are unable to use the online survey. We must receive your responses by 11:59pm on 4 October 2023. Responses received after this will not be taken into account. The postal address is given at the end of the document. This is not a Freepost address.
Easy read (update 05/09/23)
An easy-read version is now available here: https://www.gov.uk/government/consultations/our-plan-to-improve-the-lives-of-people-with-mecfs-easy-read Please note: If the Easy Read option is used to complete the consultation, then the deadline for these submissions is the 30th October 2023.
Audio
An audio version of the Interim Delivery Plan is available from https://soundcloud.com/actionformeaudio/sets/the-interim-delivery-plan-on-mecfs-my-full-reality
Hard Copies You can request a hard copy by emailing your name and address to mecfs@dhsc.gov.uk. Do not send any other personal information to this mailbox. Once your copy has been despatched, your contact details will be deleted.
3. Why are we carrying out the survey?
The Government wants to understand how we can improve the lives of people living with ME/CFS. We are running this survey to seek the views of the ME/CFS community including patients, families and carers, healthcare and other professionals, clinical academics and researchers.
4. Who is the survey for?
We are seeking input from the ME/CFS community including patients, families and carers, healthcare and other professionals, clinical academics and researchers. You must be over 13 years old to take part in the survey. If you are under 13, you can ask a family member or carer to fill in the survey for you.
5. Are there different survey links for different groups (e.g. patients, healthcare professionals etc.)?
No, everyone filling out the survey uses the same link. You will be asked which group you belong to as part of the survey.
6. What will I be asked?
You will be asked a little bit about your background as a member of the ME/CFS community and to give views on the proposed actions set out in the Interim Delivery Plan.
7. If I fill out the survey, what happens to my data?
Survey responses submitted are collected by the Department of Health and Social Care and will be viewed by policy officials at the Department.
Survey responses will be used exclusively for the production of an updated Delivery Plan and related policy work by relevant policy teams in Scotland, Wales and Northern Ireland to inform their future policies. We will not share any personal data (if you have provided any). Where we have received a response to the survey from an organisation, we will provide the name of the organisation that has provided the response.
Responses will not be shared with any third parties. Data will be collected in accordance with the General Data Protection Regulation (GDPR) and Data Protection Act 2018, which legislate to protect your personal information. Responses to this survey are anonymous unless you choose to share personal details such as name and email address in the final part of the survey.
You can find the Department for Health and Social Care’s privacy notice on the consultation page.
8. How long will the survey be running?
The survey will run for 8 weeks from 9 August 2023 to 4 October 2023.
9. How long will the survey take?
The survey will take approximately 20-30 minutes to complete, depending on how many questions you answer.
10. If I am a healthcare professional/researcher/carer/family member/industry professional and also have ME/CFS myself, can I complete the survey twice?
Yes, if you suffer from ME/CFS and are also involved in ME/CFS research, healthcare or support or if you also have family member with ME/CFS please feel free to complete the survey twice from both perspectives.
11. If I work for a company/organisation and would like to respond to the survey, do you want a response from me as an individual or on behalf of my whole organisation?
We welcome responses from both individuals who work with ME/CFS and organisational level responses. If you are responding to the survey on behalf of a company or organisation, please indicate this when prompted.
12. I have symptoms of ME/CFS but don’t yet have a diagnosis, so can I complete the survey?
Yes. We are interested in the views of everyone who has an interest in ME/CFS.
13. Can someone help me to complete the survey or complete it on my behalf?
Yes. If someone is completing the survey on your behalf, they must have your consent to do so. They can show that they are completing it on behalf of someone else.
14. I’m under 16 – can I do the survey myself?
Yes, as long as you are 13 years or older.
15. I used to have ME/CFS but am recovered now. Can I still give my views ?
Yes. We are still interested in your experience and your views on the draft plan.
16. I used to care for someone with ME/CFS but I don’t any more. Can I still give my views ?
Yes. We are still interested in your experience as an unpaid carer and your views on the draft plan.
17. There is more than one person in my household who has ME/CFS. Can we all complete a survey on-line using the same computer?
Yes. Just make sure that one person submits their survey before the next person starts it.
18. Do I have to complete the whole survey?
No. You can complete as many questions as you wish, skipping those that you do not want to answer.
19. Do I have to read the whole of the Interim Delivery Plan, to be able to respond to the survey?
No. The survey asks for your views on the following chapters – Research, Attitudes & Education, Living with ME/CFS, Actions and the use of language in ME/CFS. You could just read one or some of those chapters and only answer the relevant questions.
20. Can I complete the survey in stages, over a period of time?
Yes. You can save your progress and return to it another time, providing you use the same browser and device each time.
21. Can I change my response after I have submitted the survey, if I change my mind?
Yes, if you have given us your email address when you submitted the survey and as long as the survey hasn’t closed. We will use your email address to find your survey response.
22. I find it difficult to use a computer. Can I complete the survey in another way ?
Yes. You can print a copy of the survey and return it to us, or we can post you a paper copy to complete instead. Please email us to request a paper copy or ask someone to do this for you, at: mecfs@dhsc.gov.uk
Please include your name and address in the email. This will not shared with anyone outside of the consultation team.
23. When does the survey close?
The survey is open for 8 weeks. It will close at 11.59pm on 4 October 2023. If you are posting it back to us, please post it to us before this date. Responses received after this date will not be considered.
24. What will happen to my response once I submit it?
Once the survey has closed, all the responses will be collated, read and analysed by government officials. Every response will help us to develop an updated version of the Delivery Plan. If you use services or work in Wales, Scotland or Northern Ireland, your response will be shared with officials from that nation’s government / executive so that they can consider your views in relation to local policy.
25. What will happen to my personal information?
Our survey provider will erase all data submitted through the online survey within 1 year of the survey closing.
DHSC may retain anonymised response data for research and FOI purposes for no longer than 5 years, reviewed after 2 years.
Postal survey responses will be destroyed after they have been scanned to create a digital copy.
26. When will the results of this survey be published?
Once the survey is closed, we will consider the responses and update on next steps in due course.
Executive summary
This consultation seeks views on an interim set of actions to improve the experiences and outcomes of people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) that have been developed in collaboration with people living with, working or interested in the condition. It will inform the development of a final cross-government delivery plan on ME/CFS.
The consultation will run for a period of 8 weeks and is open to everyone aged 13 and over. You can respond as an individual or on behalf of an organisation.
‘My full reality: the interim delivery plan on ME/CFS’ is available on the consultation page.
The easiest way to participate in the consultation is to complete the online survey.
The consultation closes at 11.59pm on 4 October 2023.
My full reality: interim delivery plan on ME/CFS
ME/CFS is a long-term health condition which remains poorly understood, despite affecting an estimated 241,000 children and adults in England.
It is a complex, multisystem, chronic medical condition. It is not clear what causes ME/CFS. In many cases, symptoms are thought to have been triggered by infection, but it is not simple post-illness fatigue - it lasts longer and even minimal mental or physical activity can make symptoms worse.
ME/CFS can be characterised by:
debilitating fatigue that is worsened by activity, which is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest
post-exertional malaise after activity in which the worsening of symptoms is often delayed in onset by hours or days, is disproportionate to the activity and has a prolonged recovery time that may last hours, days, weeks or longer
unrefreshing sleep or sleep disturbance (or both), which may include feeling exhausted, feeling flu-like and stiff on waking, broken or shallow sleep, altered sleep pattern or hypersomnia
cognitive difficulties (sometimes described as ‘brain fog’), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multi-tasking
Other common symptoms may include severe pain, sensitivity to heightened sensory stimulation, postural orthostatic tachycardia syndrome (POTS) and gastrointestinal problems.
Symptoms can fluctuate in severity and over time, particularly for people who are affected at a mild or moderate level. It is estimated that 1 in 4 adults diagnosed with ME/CFS are so severely affected that they are house-bound or bed-bound, with little functional capacity, needing 24-hour care. This can last for months or years. In rare cases, the outcome has been fatal.
The government is committed to supporting all people living with ME/CFS. On 12 May 2022 the government announced an intention to develop an ME/CFS delivery plan to improve the experiences and outcomes for people with the condition. The Department of Health and Social Care (DHSC) has led cross-government work to develop this interim delivery plan.
Scope of the consultation
We know that people living with ME/CFS need support from a range of services.
We are now inviting stakeholders across the UK - including people living ME/CFS, their families and carers, healthcare professionals and researchers - to put forward their views on a set of actions on research, attitudes and education, and living with ME/CFS, as well as about language used in ME/CFS.
Your responses to this survey will used to build a picture of how well the interim delivery plan identifies and addresses the issues most important to the community of people interested in ME/CFS, and help us to understand where we need to go further.
Questions
Chapters 2, 3 and 4 of the plan set out the key problems to be addressed, some proposed descriptions of the future vision to be achieved and best practice principles for everyone to be aware of. Chapter 5 lists the agreed actions setting out what will happen to address the problems identified.
Research
The plan concludes that the research community has a low capacity and capability to respond to ME/CFS research needs, and that awareness of those research needs is low. The level of biomedical research on ME/CFS that has been funded is also low.
The government is keen to build on the work already done by the National Institute for Health and Care Research and Medical Research Council, such as the DecodeME study, and the James Lind Alliance Priority Setting Partnership’s Top 10+ research priorities.
The plan sets out proposed commitments to action in 3 areas: research strategy, capacity and capability in the research community and building awareness and trust between stakeholders.
Please have a look x