Families tell of difficulties in resettling disabled after long hospital stays
Health trusts need to take action to improve the "emotional" transfer of patients with learning disabilities from long-term hospitals to living in the community, according to a new study.
The key recommendation was made by the Bamford Monitoring Group after interviewing patients and families who had gone through the resettlement process.
The study, part of the Life After Living In Hospital report, said a phased transition is needed for every person with a learning disability who is being moved from a long-stay hospital.
This, the report said, will help patients make an informed choice about where they want to live.
The Patient and Client Council (PCC), which established the Bamford Monitoring Group, also recommended the health trusts should involve each person with a learning disability and their carer or family in all decisions.
This information should be provided in an understandable and accessible format.
The PCC interviewed 15 people with a learning disability who had been resettled from Muckamore Abbey Hospital and Longstone Hospital since 2008.
Among the main issues identified about life in hospital were the lack of freedom and choice, the lack of privacy, and isolation.
Two people said that they were told by staff that they were going to move, and that they were not involved in the decision.
But four people said that their family attended at least one meeting and helped them to relocate.
One parent – who remained anonymous – said the process of moving was complicated and took several years.
"We constantly said over the 12 years that we wanted her home," the person said. "I would never give up on her. I had the facilities, the shower room. We didn't need money, all I wanted was my daughter home."
Another relative talked about the difficulties encountered in trying to organise services in the community once their family member had moved from hospital: "When I was asking for respite, I had to go to my MLA to get anywhere," they said. "I eventually got some but it was unreliable.
"I asked many times for physio but it never happened. We were told it wasn't safe, there was no funding, there was nowhere for her to go in the community. She's out now but there is still no help."
PPC head of operations Louise Skelly said there had been generations of people "living in institutional settings, with no independence or choice".
Ms Skelly said people with a learning disability "prefer to live in the community" and told the PCC they have experienced greater freedom, choice and independence since leaving hospital.
A SORRY TALE OF CONSISTENTLY MISSED TARGETS OVER DECADE
It is estimated that 16,366 people – nearly 1% of the population – have a learning disability. More than a quarter of these have a severe or profound learning disability.
In 1995, a policy decision was taken by the Department of Health, Social Services and Public Safety to move all long-stay patients from the three learning disability hospitals in Northern Ireland (Muckamore Abbey Hospital, Longstone Hospital and Lakeview Hospital) to live in the community. The initial target was to resettle all learning disability patients from long-stay hospitals by 2002.
However, this target was not met and by 2002 only half of the patients had been resettled.
The Bamford Review of Mental Health and Learning Disability recommended that "by June 2011, all people living in a learning disability hospital should be relocated to the community". This again was not met. More recently Transforming Your Care: Vision to Action (DHSSPS 2012) commits to closing long stay institutions and completing the resettlement process by 2015.
The Patient and Client Council (PCC) was set up in 2009. It was established as an independent voice for health and social care in Northern Ireland.