Blog by Ivan Olbrechts and James O’Rourke, Family and Friends Representative Body members
We recently went to the All Party Parliamentary Group (APPG) on Learning Disability as Learning Disability England representatives.
The APPG wanted to talk about “The future of Transforming Care”.
We both have family members with a learning disability and felt it was important we went to this meeting to hear what the politicians are doing to stop people with learning disabilities going into hospital and how they will provide the support and treatment they need in people’s home towns.
The APPG was chaired by Mark Harper MP. Helen Whately MP (the Minister for Care) Barbara Keeley MP, and senior figures from The Care Quality Commission and NHS England spoke at the meeting.
Also speaking was Baroness Sheila Hollins, who has been leading the independent reviews of the care of people with Learning Disabilities and Autism who are detained in hospitals.
There were several families of people who have been detained in hospitals for many years at the APPG meeting too.
We found out at the meeting that there are still over 2000 people with learning disabilities and autism in hospitals because they have the label of ‘behaviour that challenges’.
This includes over 200 children under the age of 18.
There were some very powerful and emotional stories from family members who had loved ones detained in hospitals, ATUs and secure units with no discharge in sight, even after many years.
People attending also talked about the fact there have been some success stories, where people are now living happily in their own homes in the community.
But it was also raised that several deadlines and targets to improve upon this situation for people had been missed.
People at the meeting were also worried that people held in these services were at increased risk of abuse and neglect, like that seen at Winterbourne View and Whorlton Hall.
Baroness Hollins talked about the progress with the independent case reviews and some key themes that were emerging.
She said these include complacency in hospitals with not enough families involved, not enough specialist support in the community and a lack of good quality advocacy and / or legal representation.
Some families responded warmly to Baroness Hollins’ report, but some commented that this information had been found in previous investigations and reports.
Overall, it was a good opportunity to listen and give feedback to the key people who have been involved in Transforming Care, but it was more of a review of Transforming Care than what we had hoped and believe needs to happen: discussions about action to get people out of hospitals and supported in their own community.
We think it is important that more people with a learning disability and their families go to the APPG meetings.
We need to get our voices heard and push for action together.
If you are a family member who would like to talk to us about your thoughts and experiences, you can contact us via info@LDEngland.org.uk or 0300 111 0444.