I’m becoming increasingly concerned about the situation that my sister and her husband find themselves in. They are both in their mid-sixties and both have non-ME/CFS health problems. They are also looking after their son – who is in his mid-thirties and has had ME/CFS for well over 10 years – with no other practical or financial help. Their son’s state of health has steadily declined in the past year. He no longer works, is largely housebound and is dependent on his elderly parents for most of his care. Like so many other people with severe ME/CFS, he has lost most of his friends and has very few visitors. My main concern is that his parents are finding it increasingly difficult to cope. The GP doesn’t know what to do and I sense that only some form of crisis will make things happen. Do you have any suggestions or do they just have to carry on till the point where they can no longer cope?
I’m very sorry to hear about your sister and the very difficult situation that both parents are having to deal with. Unfortunately, the picture you paint of a relatively young person with severe ME/CFS being cared for by elderly parents is very familiar and there are no simple solutions here. From what you say it sounds as though the son would not be able to cope with any form of independent living and we just don’t have any supportive communities or residential care homes for people with ME/CFS in this situation.
In view of the significant deterioration in his health he really needs to be properly re-assessed, preferably by someone with expertise in this illness, to make sure that there isn’t another medical problem that is going unrecognised. I would suggest an appointment with his GP. NHS primary care should be aware of the NICE Clinical Guideline for ME/CFS and its recommendations (see below). The GP might want to refer to a local ME/CFS Specialist Service for help with the assessment and to try and arrange for home visits and to establish effective and ongoing management.
I think that social services should also be involved if they are not already. The GP can arrange for a care needs assessment (which will unlock social care) and for him to see an occupational therapist (who should be part of the ME/CFS Specialist Service). Social services establish practical help – by granting a personal budget that could be spent on a paid carer, for example – and an occupational therapy assessment could identify other forms of help that might be required around the home to help make life a little easier.
Finally, the family need to investigate three welfare benefits – Personal Independence Payment (PIP), Universal Credit (UC), and Carer’s Allowance. The GP and/or ME/CFS Specialist Service should be able to help with any medical evidence required for applications and Citizens Advice can help with form completion if this proves difficult. PIP is a disability benefit that is paid regardless of whether he can work, and is based on functional impairments and how they affect his everyday activities. UC is paid to those unable to work because of illness or disability, and Carer's Allowance can be paid if his parents provide care in excess of 35 hours per week.
The ME Association has detailed information available to download from the website shop. For example:
- We have produced a free summary of the 2021 NICE Clinical Guideline for ME/CFS, and suggest that you familise yourself with its recommendations. Those that are most relevant can then be discussed with your GP, ME/CFS Specialist Service, or Social Care provider (as appropriate).
- 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.
- Disability Aids, Adaptations, and Social Care: 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.
- 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.
- Social Care & Social Services: 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.
- PIP – A Guide to Applications: This guide takes you through the process of applying for Personal Independence Payment. It is relevant to people with ME/CFS and is a must-read if you are considering an application.
- ESA & Universal Credit – A Guide to Applications: This guide takes you through the process of applying for Employment and Support Allowance and Universal Credit. It is relevant to people with ME/CFS and is a must-read if you are considering an application.
- Carer's Allowance: We explain all you need to know about Carers Allowance. The benefit is intended to provide financial help to someone who regularly spends at least 35 hours a week caring for someone with a disability.
Medical Matters is for information purposes only. The answers provided by Dr Shepherd and the ME Association’s other expert advisers should not be construed as medical advice. We recommend that any information you deem relevant is discussed with your GP as soon as possible. It is important to obtain advice from a GP who is in charge of your clinical care, who knows you well, and who can consider other likely causes for symptoms. Seek personalised medical advice whenever a new symptom arises, or an existing symptom worsens. Don't assume that new or worsened symptoms are a result of having ME/CFS.