- Get on touch with your local social work office and explain your circumstances. You can find the phone number and address in a telephone directory. If necessary, someone else can get in touch for you.
- In some areas, there are long waiting lists. If your need is urgent, a sympathetic GP might be able to speed the process up. Otherwise, send a letter explaining your situation - the Citizen's Advice Bureau or an advocacy service may help with letter writing...
- Most people with ME find social work visits daunting and stressful, so have a friend there for support.
- Social workers work in a stressful field, within strict budgetary restraints. You should therefore prepare carefully for the visit to ensure that you get the right type of help. Print off the Preparing For a Social Services Assessment page to help you.
- Write down all the things you need help with, including leisure activities.
- Ensure that the length and time of the visit suits your limitations. If necessary, you can stop the visit - preferably before you collapse - and ask if they can come back another time.
I requested a new needs assessment last year, and was allocated one visit, in spite of a number of phone calls explaining that this would be unsuitable. A letter explaining my limitations was sent to everyone involved, and a formal complaint was made. They are now doing the assessment in small stages.
What if things go wrong?
- If the person doing the assessment seems hostile to ME, you could ask to see someone else.
- Try not to take things personally if you feel that your needs aren't understood. Social workers are human and money is scarce.
- If you are unhappy about the way you have been dealt with, then you have the right to complain. Social Work Departments supply information about their Complaints Procedure on request. Further information about making a complaint can be seen in the section on Coping With Social Services Care
- Don't give up if you don't get the help you need. Instead : step back, recover, then try again. Take a long-term view and tackle things a step at a time.
Good luck!