I would be totally housebound if I hadn't telephoned the Social Work Department to ask for help a number of years ago.
A social worker visited, and arranged for an Occupational Therapy assessment. I was supplied with equipment which greatly enhanced my life.. My favourite was a mattress elevator, which sits me up and down in bed, using a joy-stick control. It saved energy, reduced pain, and enabled me to be upright for longer... My home was adapted to suit my needs and I was allocated carers to help me with daily living. Additional funding for care was provided by The Independent Living Fund.
I was very lucky in that my regular carers were wonderful, conscientious people, but nevertheless, I found life very hard because of the number of different people who were allocated to my care. A worse problem was created by the fact that I had not been invited to the care assessment, and consequently the care package was not suited to my needs. Eventually, the social work department agreed to give me Direct Payments to enable me to be responsible for my own care.
Having my own care staff has benefits and drawbacks. I have now been an employer for 12 years, and have experienced many different problems including theft, skiving, bullying and exploitation. Social Services never give me emergency cover when things go wrong, which makes life very difficult at times. I could not cope without ongoing help from a good friend, who steps in during times when staff let me down, or if my needs suddenly increase...
In spite of all the problems, having my own staff has given me a better quality of life and greater fulfillment. I have learned from mistakes, and thanks to a stringent recruitment process, I now have relatively few problems with carers.
Direct Payments are not an easy option, and they would not be a suitable arrangement for everyone. My advice to other people with severe ME would be to consider very carefully if they could cope with recruiting, managing staff, paperwork, etc.. and if they have people to help in emergencies, such as being suddenly left in the lurch by a carer.