Medical Matters > Residential Care Home: Complaints

ME Essential Autumn 2020


I am becoming increasing concerned about the care that a relative with ME/CFS is receiving in a private residential care home. The staff have no understanding about how to care for people with ME and try to push her to do more and more. There have been occasions where I feel that her care has been neglectful or even harmful. I have raised my concerns in meetings with the staff and management on several occasions – who fail to accept that there is a problem. What can I do?


I’m very sorry to read about what is happening to your relative. These are serious allegations that need to be properly investigated by the management. Unfortunately, the situation you describe is not unique and almost certainly stems from a lack of training and knowledge about ME/CFS in the whole social care sector.

I would suggest that you summarise all of your concerns, and any evidence to back them, and then compose a written account of what has been happening – Citizen’s Advice should be able to help you write a suitable letter. You should send this letter (by recorded delivery) to the Chief Executive of the company that runs the care home. Hopefully, this will result in a more productive meeting.

If this approach fails to have any effect I would send a similar letter to the doctor who has responsibility for the care of people in this home. A copy of your letter should also go to the Care Quality Commission – who are tasked with monitoring, assessing and reporting on standards of care in these sort of residential homes. Before finalising any correspondence have a look at the most recent CQC report on this home. This can be accessed on the CQC website.

If you think it might help, we are always willing to speak to social services and care home staff about ME/CFS to try and improve education and understanding.

  • Please let us know if you have had to deal with a similar concern and how it was resolved or if we can help you further:

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Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.

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