Did you see the brilliant play called “Housemates” when it was performed at the Sherman Theatre in Cardiff or at Theatre Clwyd in Mold? It told the story of a student called Jim Mansell and young man with Downs’ Syndrome called Alan Duncan. When they met, Alan was a “patient” living permanently in a special hospital along with hundreds of other children and adults with learning disabilities. Miraculously, Jim managed to persuade the health board, the local council and the university to allow Alan and four other young “patients” to move out of the hospital and share a house with Jim and three other students. The play presents their journey from a place of abuse and deprivation to a place of freedom and achievement.
That journey was real. It took place in Cardiff, in the 1970s. It was a story that laid the foundation for an “All Wales Strategy” that won global admiration, and that transformed services for people with learning disabilities throughout the 1980s and 1990s. Great work was done to resettle people from all the old “special” hospitals in Wales, and nearly all existing unnecessary hospital provision was closed and replaced by community-based services. These services included:
- Multidisciplinary teams – coordinated around individual plans
- Person-centred domiciliary care and support
- Ordinary local houses and flats – with adaptations if required
- Support for work, education and leisure
- Help for family carers – including short stay breaks
- Specialist crisis intervention / prevention services
However, with hindsight, we can now see that investment in crisis intervention and prevention was insufficient. For example, in many parts of Wales there was and is a lack of local provision for crisis accommodation. There is also, too often, inadequate planning for stress points such as transition from school.
This shortfall or patchiness in service infrastructure created an opportunity for the opening of new hospitals, and the system filling them with people in crisis. This also meant a lot of money lost from the public purse. Very high fees were charged – ostensibly for short-term specialist assessment and treatment. Short stays often became long stays, ensuring a steady flow of significant income for the private investors and management companies. But the worst part of the situation is not that money was being extracted for private profit when it could have been spent on filling the gaps in local services. The worst part is that we are now back again to the nightmare of people being sent away to large, impersonal institutions where they are routinely deprived of basic rights and freedoms.
The remarkable student and original “Housemate”, Jim Mansell, went on to become a Professor in Kent University and was the UK’s leading expert on services for people with learning disabilities at risk of being sent away to a specialist units. The Mansell Report in 2007 set out the hidden cost of failing to develop local services. Tragically, (In Wales or England) what Jim was saying was not taken on board widely.
In 2011 we had the Winterbourne View scandal that led to the establishment of a Taskforce in England and an Action Plan in Wales. But nothing much has changed, in truth. Again, with Whorlton Hall, in 2019, many of the same abuses were identified – and it has reared its head again with the scandal around St Andrew’sHealthcare[1] just in 2026.
In 2020 an NHS Wales review of Learning Disability Hospital Inpatient Provision identified that at least 140 people with learning disabilities were still living in a hospital setting at an average cost of £199,000 per person per year, and with an average length of stay of over 5 years. There were 70 recommendations but no subsequent report on their implementation.
In 2023, the pan-UK IMPACT project looked at long-stay hospitalisation and produced a video focused on people’s lived experience and loss of human rights. The nightmare continued.
In 2024, the Stolen Lives group campaigned for action on this issue, and they were given hope that urgent steps would be taken.
But it is 2026 and there is still no evidence of policy makers and system leaders giving this issue any priority and accelerating activities to bring people home and prevent them leaving their communities in the first place.
There are some exceptions. The Good Life Alliance is a group where people with a commitment to action are coming together for mutual support and encouragement. But we need the new Welsh Government to step up to this challenge, and put Wales back on the international map again, as a country that will not tolerate the long-term institutionalisation and denial of human rights of people with learning disabilities or autistic people.
Our Manifesto sets out the key actions required. And we would be delighted to discuss it with the future policy makers of Wales.
Adrian Roper
Chair
Good Life Alliance
[1] Care watchdog uncovers more abuse allegations at scandal-hit hospital | The Independent
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