Having trouble getting the help you need? The first step is to have your needs assessed by Social Services, ideally with a supporting letter from your GP
Amanda Howard's level of care was threatened until she wrote to her MP who intervened on her behalf, leading to a home visit from the Care Manager. With supporting letters from various disability agencies, including AfME's helpline co-ordinator Pauline Taylor, her home care provision was safeguarded.
This woman's case illustrates the benefit of having an advocate fight on your behalf if you're too unwell to do so yourself. Pauline adds: `I always advise people who are looking for advocates to contact Radar (020 7250 3222) as sometimes they can pinpoint local organisations on their list that offer help.' Other sources of support are:
the Independent Living Scheme (in some parts of the country) which helps disabled people get the help they need to live as independently as possible (020 7587 1663)
local Disability Information and Advice Line (DIAL) - 01302 310123)
your local law centre or Citizens' Advice Bureau (who may do a home visit if you're housebound)
an occupational therapist (via Social Services or your GP) who can help you get disability aids
AfME welfare benefits lines, see page 45
your local councillor or MP
SHAD is a nationwide voluntary service where a volunteer goes to live with a disabled person to help them live independently. Call Maria Prelchi on 020 8814 0910 for more details.
Your local Volunteers Bureau (in the phone book) or Community Service Volunteers (CSV) may also be able to help. Angela Smout writes `My volunteer from CSV lived with us for six months during a bad relapse and was of great practical help. I made excellent progress with the constant care and attention ... it was not a particularly cheap option but did allow my husband to continue working with peace of mind.' Contact CSV on 020 7278 6601. Able Community Care (01603 764567) also provides live-in carers.
Localgroups can offer support over the phone as well as face-to-face
Face-to-face meetings are only a tiny part of what most local groups have to offer, so don't be put off joining yours if you're housebound. Many have a network of telephone contacts to keep people in touch or provide a `listening ear', while nationally, there is a telephone network for people with ME run by Carolyn Draper (020 8878 8845). Some also tape or video lectures and make these available.
It's important to make your needs known to the group leaders - would you like to be in contact with or visited by someone with similar interests or around your age, for instance? Perhaps you need an advocate or help filling in forms. Use your group's newsletter to reach out to others for advice, friendship and support. Local groups are often also the best source of information about recommended therapists in the area who will make home visits.
Admittedly, the level of support offered varies from group to group. Even so, just getting in contact with other sufferers can be a real tonic, especially those who've been where you're at but are now much better. It's good to talk.
For details of your nearest support group, call the Wells office.
Please note that Dr Ian Hyams is hoping to include those with severe ME in his next research study. See page 19 for more details.
InterAction No. 33 May 2000 p31
ACTION FOR M.E. 3rd Floor, Canningford House, 38 Victoria Street, BRISTOL, BS1 6BY