An organisation of disabled people based in the North West of England called Breakthrough UK is keen to include people with ME/CFS in a national survey to establish the level of support being received by people who manage their own home care support in the role of employers.
Elaine Astley, policy and research assistant with Breakthrough UK in Manchester, said: “We are interested to find out what help (if any) people who have to pay for all or some of their support at home have received in their role as an 'employer' and how useful it has been. We would also like to know whether people who pay for their own support think they would benefit from more assistance or guidance – and what they consider to be the pros and cons of self-funding.”
The project is called “The workforce implications of adults and older people who employ their own care and support workers”.
People can participate by questionnaire, face to face/telephone interview, or via a focus group – whichever suits them best. Participation is confidential. Every self-funder who speaks to the researchers either face-to-face or by telephone will receive a £20 shopping voucher.
If you would like to know more, please read one of the two short briefing papers below: