Question

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?

Answer

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: Feedback@meassociation.org.uk

More information

• The NHS: Carers Breaks and Respite Care | January 2019
• The ME Association has produced a free booklet about the 2021 NICE Clinical Guideline for ME/CFS. We suggest that you familarise yourself with its recommendations. The guideline explains what you can expect from the NHS and social care services with regard to symptom recognition, diagnosis, management, referral, going into hospital, and ongoing care and support.
  • We also have detailed information about caring and social care which can be downloaded from the Free Literature:
    • An extensive booklet that considers the wellbeing of carers as well as the people they care for, what caring might actually involve, the kind of help that might be necessary, and personal stories.
    • We consider disability aids and home adaptations – the NICE guideline recommendations, NHS and social care provision, the disabled facilities grant – and helpful tips to help you achieve more independence.
  • And, two other booklets that might be relevant:
    • Severe ME/CFS: We discuss the symptoms, symptom relief, some thoughts about management, how you can explain to family, friends, and carers, and we consider the additional support you might be entitled to receive.
    • Hospital Pack: This pack was designed to help you explain the care you need when going into hospital and features references to the NICE Guideline on ME/CFS. It was jointly produced by the 25% Group, AfME, BRAME, and the ME Association in May 2024.