Question

We are elderly parents (both in our late sixties) who have been looking after a daughter with moderate to severe ME/CFS for the past 20 years. Like many people severely affected she is not receiving any care from a hospital-based ME/CFS services and she only receives very occasional visits from the GP – who admits that she has no idea about how to manage people with severe ME/CFS. We have, however, been fortunate in obtaining some good social care support.

We are becoming increasingly concerned about the overall state of our daughter’s health and having discussed this with the GP who agrees that she requires a thorough medical re-assessment. The problem is that the local ME/CFS service does not carry out domiciliary (home-based) visits and they don’t have any in-patient beds for assessment or management of people with severe ME/CFS.

The GP is willing to make a referral outside our local area but does not know of anywhere suitable. We would also be willing to pay for a private hospital if we were sure that this would be suitable. Are you able to help?

Answer

We are very sorry to learn about the situation you are facing and the subject of elderly parents who are looking after sons or daughters with severe ME/CFS is something that we are currently discussing at the Forward ME group of charities.

As far as NHS hospital based facilities for people with severe and very severe ME/CFS is concerned, the situation here is completely unacceptable in that the NHS physician-led unit that used to form part of the Essex ME/CFS service closed several years ago and the (private) physician-led unit at Burrswood Hospital in Kent no longer deals with in-patient admissions for people with severe ME/CFS.

Unfortunately, as you say, most of the NHS out-patient services for people with ME/CFS do not provide a meaningful domiciliary service. We are now in a position where the only hospital to have any dedicated in-patient beds for people with ME/CFS is the service in Leeds which is based at the National Inpatient Centre for Psychological Medicine (NICPM) – from where we receive very mixed reports.

Hopefully, the situation will now start to change for the better as a result of the recommendations in the 2021 NICE Clinical Guideline on ME/CFS.  In relation to hospital admissions for people with severe ME/CFS there are some very specific recommendations:

Assessment and care and support planning by an ME/CFS specialist team:

• • Offer home visits to people with severe or very severe ME/CFS to carry out their holistic assessment and develop their care and support plan.

Access to care and support:

Service providers should be proactive and flexible in delivering services to people with severe or very severe ME/CFS, who may have particular difficulty accessing services and articulating their needs. This could include home visits, online or phone consultations, supplying written communication, and supporting their applications for aids and appliances.

When planning hospital care for people with severe or very severe ME/CFS:

• • discuss with the person (and their family or carers, as appropriate) what to expect when they come into hospital
  • aim to minimise discomfort and post-exertional malaise during transfer to hospital, for example by planning the route in advance, avoiding noisy areas and admitting them straight to the ward on arrival
  • discuss the person's care and support plan with them, including information on comorbidities, intolerances and sensitivities, to plan any reasonable adjustments that are needed
  • aim to provide a single room if possible
  • keep stimuli to a minimum, for example by:
  • seeing them one-to-one
  • using calm movements and gestures
  • not duplicating assessments
  • being cautious about the pressure of touch – keeping lights dimmed
  • reducing sound
  • keeping a stable temperature
  • minimising smells.

We are not aware of any private hospitals that can be recommended who have the necessary experience of dealing with the assessment and management of people with severe ME/CFS. We are sorry that only very limited help can be provided to a very important dilemma.

• Please let us know if you have any experience – good or bad – of any NHS or private hospitals where someone with ME/CFS has been admitted for assessment or management: Feedback@meassociation.org.uk

More information

• The NICE Guideline for ME/CFS: An ME Association Summary
  This booklet is available as a free download and is recommended reading. It lets you know what to expect from the NHS and social care services with regard to symptom recognition, diagnosis, management, referral, and ongoing care and support.
• Severe ME/CFS: Helping You Cope
  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.
• Caring for a Person with ME/CFS
  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.
• Sensitivities, Intolerances, and Hypersensitivities in ME/CFS
  We provide information and practical self-help management tips on how to cope with most of the common sensitivities, intolerances, and hypersensitivities that can affect people with ME/CFS.