Day 99: Local experiences, national concerns #107days

Day 99 is another shared day. It was adopted by CHANGE and OxFSN, two organisations actually improving provision for people with learning disabilities, not just talking about it!

CHANGE are holding their national event today, together with Lumos, for people with learning disabilities ‘Our Voices, Our Choices, Our Freedom‘ in Leeds.

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The event aims at freeing adults, young people and children from institutions in the UK and across Europe. You can follow the day on the hashtag #voiceschoices. The twitter feed so far suggest a great day is being had.

The other group sharing Day 99 is Oxfordshire Family Support Network (OxFSN). When asked why they are supporting #107days and #JusticeforLB they said this:

Oxfordshire Family Support Network (OxFSN) is a (very) small charity that provides independent information, advice and support by families for families of people with learning disabilities. Set up by family carers who wanted to use their experience to help others in the same situation we strive to improve the lives of people with learning disabilities and their families.

We wanted to be part of the #107 days because like so many others we were shocked and saddened by what has happened to Connor and his family. Our aim as a charity is to inform, inspire and involve families of people with learning disabilities. We practice and promote person centred thinking and practice, delivering training and workshops to parents and professionals who work with our relatives and we attempted to support Connor, Sara and her family during his time in the unit. At Sara’s request we facilitated a person centred CPA meeting with Sara and staff at STATT (evidenced in the independent report into his preventable death)

Since Connor’s death we have been beavering away behind the scenes on projects we feel could make a difference to other families.

Today OxFSN, together with Healthwatch Oxfordshire, launch their new report, A local experience of national concern, dedicated to LB’s memory.

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 This report, funded by Healthwatch Oxfordshire forms part of a scoping process for further work which we hope will ultimately help other families around the country as well as those closer to home.

The report highlights the failures in respect of the current system in Oxfordshire and calls on local commissioners to work with families and people who use services to create services which meet their needs by working with them as ‘experts by experience’.

It has also identified a range of issues that require further scrutiny, including the following:

  • The problems associated with the transition between children’s and adult services;
  • The frequent failures to provide information and support to enable families to make informed choices about which services to use;
  • A proposal to undertake scoping work on developing a peer-to-peer network of support and advocacy for families, with the suggestion that Oxfordshire could be a potential pilot area to test out a peer advocacy and support model;
  • The importance of services and commissioners working with families to seek solutions rather than perceiving families as part of the problem.

Jan Sunman, author of the report and project worker for OxFSN  said:

‘Our purpose in writing this report was to give a voice to a very hidden group of families, and to show how they struggle with fragile support systems that need to radically change in order that they and their relatives can have a basic quality of life that the rest of us take for granted.  Families are isolated and desperate for good support and advice. They often have a poor understanding of the rights of their relatives’.

On a related note if you would like to know more about your legal position then check out our web chat #JusticeforLBLaw taking place next Monday.