Question

Are there any specialist nursing homes or units offering care for people with severe ME? I seem to recall that there was once an initiative to raise funds for an ME care home but this never went through due to lack of funds. I wonder if such a venture could be initiated again?

Answer

Unfortunately, we are not aware of any specialist nursing homes or hospital units offering specialist care for people with severe ME/CFS. And the two hospital-based units that we did recommend – Harold Wood Hospital in Essex and Burrswood Hospital in Kent – no longer have an in-patient facility for people with ME/CFS.

The ME/CFS Specialist Service in Leeds has some in-patient beds but we receive very mixed feedback on this service – so I would recommend contacting people who have been there before pursuing this option. As you say, the initiative to set up a care home for people with ME/CFS failed – partially due to lack of funds.

Raising sufficient money to purchase or rent a suitable property and then run such a service would be a major undertaking and is not something that the ME Association could take on at the moment.

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.
    • We explain how your Local Authority can provide finance to help you cope with ME/CFS. You get to choose how to spend a personal budget, but first you will need to obtain a needs assessment.
  • 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 Support 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.