Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS): good practice statement

7. Support for patients

For people living with ME-CFS and their care needs: gaining support depends – most importantly – on the providers of health and social care, colleagues, friends and relatives, and those providing education and leisure services to understand and respond to these needs.

GPs primarily provide medical advice to patients with ME-CFS and their carers. Primary care teams also support patients with advice in day to day living with their illness and by signposting help with benefits, social work and employers – including referral to appropriate agencies, for example Citizens Advice Bureau and social services.

Services should be delivered in ways that are suitable for the individual patient; this may sometimes mean domiciliary services. This is particularly important for the severely affected who often experience extreme barriers to accessing all forms of care and treatment.

7.1 Welfare benefits

People with ME-CFS are as potentially disabled as those with other chronic conditions and are therefore entitled to apply to the Department for Work and Pensions for the full range of sickness and disability benefits, including the new Employment and Support Allowance (ESA).

Further guidance may need to be produced following welfare reforms currently under way in Scotland.

In order to qualify for benefits the claimant has to provide sufficient medical evidence to support a claim. The GP's assistance is essential to provide support for this process. The fluctuating nature of the condition needs to be taken into account when assisting with welfare benefits applications.

ME-CFS is an illness that may be eligible for the provisions of the Disability Discrimination Act.^[54]

NICE 2021 Update

Responsibility for delivering some benefit entitlements in Scotland is being devolved to the Scottish Government. A new agency, Social Security Scotland has been established with responsibility for ill health and disability benefits, Carers Allowance, and a number of other types of benefit. For further details please refer to Social Security and Social Security Scotland

Useful contacts for patients

People with ME-CFS can contact Citizens Advice Bureau and Advice Guide or one of the main charities (see Appendix 1) for advice on welfare benefits, housing, transport issues etc.

Local authorities often have benefits/money advice centres – see local telephone directory. Centres for Inclusive Living give information and advice on a wide range of issues including benefits and money eg the Lothian Centre for Inclusive Living – Tel: 01314752350; Lothian Centre for Inclusive Living or the Glasgow Centre for Inclusive Living – Tel: 01415504435; Glasgow Centre for Inclusive Living.

There are also local welfare benefit advice organisations and information is available from local support groups (see Appendix 1). The following organisations provide useful contacts and resources for patients:

Action for M.E. Welfare Rights Line

Factsheets on ESA, DLA etc plus a Welfare Rights Line for people with ME. Tel: 0845 123 2380 for opening times.^[55] See also Action for ME.

Citizens Advice

The local Citizens Advice Bureau may be able to help patients to fill in the forms. See the phonebook for the nearest bureau, or Citizens Advice Scotland.

Disability Alliance

Free factsheets are available to download from this website. Disability Alliance also produces a guide: ESA – Employment and Support Allowance, (price £7 – but £2 for people on benefits). The guide can be ordered by telephoning 020 7247 8776 (please note that this is not an advice line).^[56]

DWP

Benefit Enquiry Line for people with disabilities, plus downloadable factsheets from the website, which links to further information at Jobcentre Plus. Tel: 0800 882 200, Mon-Fri 8.30am-6.30pm and Sat 9am-1pm.^[57]

Jobcentre Plus

To find out how to claim assistance and for further information Welcome to GOV.UK.

DIAL UK

Some Disability Information Advice Line offices help with Welfare Rights issues. The local phone directory should be checked to see if there is a locally accessible DIAL UK office.^[58] Tel: 0141 954 8432 Email.

Benefits and Work

The Benefits and Work website contains much helpful information about benefits. Membership (currently £18.95 a year)^[59] gives unlimited access to their guides for claimants and members forum. Get the benefits you're entitled to.

7.2 Social care

Social care provides crucial support, especially for people who are severely affected. Depending on the level of disability, people with ME-CFS may be unable to undertake their own personal care, domestic tasks such as shopping, cooking, laundry, dealing with money issues, etc.

Provision of adequate support will require an effective partnership of health and social care. Early recommendation for a community care assessment will be helpful.

Allocation of a key worker or contact responsible for ensuring adequate and appropriate input to the patient's home support, may be particularly beneficial.

Note: Many people with ME-CFS rely heavily on a family member for daily care, who may themselves require support, advice, information or a care assessment. Carers Scotland has a useful website for carers.

NICE 2021 Update

More information about Social Care support in Scotland.

Following an Independent Review into Adult Social Care, the Scottish Government has committed to establishing a functioning National Care Service by the end of this parliamentary term in 2026. More information about the National Care Service.

7.3 Emotional support

There is still some stigma associated with ME-CFS and it is important to recognise that, as well as experiencing debilitating symptoms and loss of income/work/educational/social opportunities, unsupportive attitudes amongst family, friends and professionals can increase the sense of isolation and emotional impact on patients.

A recent survey of 168 ME-CFS patients in Lothian highlighted the importance of listening to patients and providing continuity of help and support.

Counselling from a trained counsellor/nurse may be very helpful where patients report difficulties adjusting to long term illness (see also Section 3).

As well as offering support through appropriate regular monitoring, GPs and primary care teams should put patients in touch with relevant charities, which offer helplines, a wide range of publications and online links to local support groups.

7.4 National Helplines

NHS 24: Provides self care advice for people in Scotland and urgent care assistance/clinical advice when GP surgeries are closed.^[60] NHS Inform: Provides a coordinated source of quality assured health information for the public in Scotland. Tel: 0800 22 44 88. NHS Inform Care Information Scotland: Provides a confidential information phoneline service for any individual who is seeking information about community care for older people.^[61]