Our work to further support families in 2013

For us at the Foundation for People with Learning Disabilities, 2013 is a year that we embark on with much excitement. There are quite a few projects starting and being completed in the next few months which we hope will make a difference to the lives of people with learning disabilities and their families.

In the spring we will be starting work on a brand new four year project with young people which we’ll tell you more about in due course. Another major project, which focuses on supporting families make plans for the future, is coming to a close and will be launching soon. Other projects are hitting their mid-way stage and it is one of these that I want to tell you more about.

I am working on a project looking at what makes life better for families and children who have very complex health needs. This group of children include those who use medical technology on a daily basis to survive. The technology may include the use of oxygen fed through a tracheostomy, or being fed through their nose or stomach (called a gastrostomy or naso-gastric tube) because they have difficulty swallowing. These children often have accompanying impairments such as epilepsy, visual and hearing impairments, physical and/or learning disabilities. Because this is a group of children very small in number, and their needs are so diverse, there is little practical information available for them and their families. However we know that this group is growing, more children are surviving into adulthood thanks to improved healthcare and the use of medical technology. This led us to develop a project to find out more about the practical needs of such families, with the aim of writing a piece of guidance that will inform them about what kinds of support and advice are available to help improve their quality of life.

Having spoken to families during the first part of the project I found out that this group of children and their families can be very isolated due to the health needs of the child, and general inaccessible nature of society. Planned outings or just going to school can be cancelled at the last minute if the child becomes unwell. This can mean admission to hospital or that the child needs to be nursed at home. Going out is a challenge because of finding places where there are suitable facilities, such as accessible toilets. People using wheelchairs who are unable to bear weight need fully accessible public toilets (such as Changing Places toilets) which have hoists and changing beds. Your general run-of-the-mill ‘Disabled toilets’ are usually not so well equipped, which often results in people having to be laid on the floor to be changed. Needless to say, this can limit where families spend their leisure time.

The parents we have spoken to said that they had to break down many barriers to achieve better outcomes for their child, including getting their house adapted to suit the child’s needs, getting better information about what individualised funding for health and social care can be used for, managing the transition from children to adults services and finding out about the benefits of employing your own team of support workers.

Last year we wrote a guide for parents based on their experiences and ideas, and now we are going to try these ideas out with families in five sites across England. We are really pleased to be working with partners in West Sussex; Gloucestershire; Blackpool, Fylde and Wyre Hospitals NHS Foundation Trust; Nottingham City and Camden and Islington who will support us to provide families with more information to develop a personalised, holistic package of support which will ultimately improve their quality of life. This part of the project will run until December 2013 and we hope to launch the findings from the project in the middle of 2014.