Christine Towers, Research and Service Development Manager at the Foundation for People with Learning Disabilities:
The Carers with a Learning Disability Network held a lively meeting recently in London. This network came together through the work of Who Cares for Us? and the Mutual Caring project at the Foundation and has been supported through the family work programme in the Valuing People Team.
Who Cares For Us? was set up by Eve Rank and Richard West both of whom care for their partners and were concerned about people with learning disabilities not getting recognised as carers and not getting the support they need. The Mutual Caring project, followed on from the Foundation’s work on older families, because it highlighted that many people with learning disabilities were providing more and more care for elderly parents.
The Network has been busy over the last few years raising awareness about the issues for people with learning disabilities as carers. They have been very successful at getting into print: Tamana Choudhury talked about her article that featured in Community Living on her experiences of providing care in her family and Andrew Roffey about his article called ‘Caring for Mum’ in Our Say! magazine.
Others in the Network have also been out and about creating awareness: Cath Baker, from the Princess Royal Trust for Carers, had been to talk to the Association for Directors of Adult Social Services and Pat Charlesworth, a member of the National Forum for People with Learning Disabilities who cares for her partner, had presented the work of the Network to the National Valuing Families Forum.
Towards the end of the Network meeting, I talked about her work supporting families to develop a plan for emergency situations, for example, when a family carer becomes ill. Richard West had felt this was something that carers with a learning disability should be offered and everyone decided to do some work together on this when they next meet.
The Princess Royal Trust for Carers, supported by other organisations, has issued a Joint Position Statement on Carers with Learning Disabilities to help organisations who help carers with learning disabilities to work better together and to get people to understand about the lives of carers with learning disabilities.
If you have any opinions on the topics discussed in this blog or would like to share your experiences, please comment in the space below.