Two years after the abuse which was uncovered at Winterbourne View, and following a new DH report which found little real change, the 3,000 people living in ‘hospitals’ and ‘Assessment and Treatment Centres’ got their first piece of good news in some time, as it was announced just before Christmas that Bill Mumford, CEO of MacIntyre, has been appointed as the new lead for the Post-Winterbourne View Joint Improvement Programme. Bill has been visionary in helping MacIntyre to embrace personalisation and he combines a strong belief in listening, with the ability to get things done.
A swift round of inspections, soon after the BBC Panorama exposé, ascertained that the horrific abuse at Winterbourne did not appear to be widespread (although failure to meet key standards was). But whilst the most upsetting aspect of Winterbourne View was the abuse, the scandal was not that abuse could happen in a place like that – it could almost have been designed to foster inhumanity – but that a place which so obviously lacked any of the hallmarks of home or community could be considered a fit place for people with learning disabilities to live, sometimes for years on end. We thought that such places were in the history books in the UK, but for people labelled ‘challenging’, we had to face the fact that this is not so.
Whilst the programme intended to make changes did a great deal of work, the initial anger never became a movement. There was a focus on process change, rather than culture change, with local areas being asked 60+ questions about what systems and relationships were in place and how confident professionals were. The answers were published, but seemed to get us no closer to answering the question, ‘Has anything really changed?’
Bill has been a key figure in Think Local, Act Personal (TLAP), the partnership championing personalisation. TLAP’s flagship product is called ‘Making it real’, which was written by people who use services and family carers as a tool for local areas to ask, not whether professionals feel personalisation is happening, but whether change feels real to the only people who matter. It is easy to get bogged down in designing processes, guidance and systems and they are often the things that we professionals do, because we know how to do them. But when we have the humility to ask people themselves what would make change feel real, things can get a lot simpler.
With that in mind, here is my attempt to put the question, ‘Does change feel real to people in the Winterbournes?’ into ten simple challenges for councils and NHS commissioners:
1. How are you making yourselves accountable on progress to individuals and families in your area? (eg do senior commissioners report regularly to groups of people with lived experience of Assessment and Treatment centres and their families?)
2. How are you involving individuals/ families in designing new approaches?
3. How are you involving providers in designing new approaches? And creating a local market place which welcomes new providers & innovators?
4. How are you building into contracts the assumption that institutional care is short-stay – and rewarding progress towards community settings?
5. Are you pooling budgets and jointly commissioning? If not, how are you demonstrating that your approach feels joined up to people?
6. Are you publishing the numbers of people in, entering and leaving institutional care in your area? And do they show that your use of institutional care is falling?
7. How do you ensure that everyone in an institutional setting has access to an advocate and an individual care plan which is regularly reviewed, with progress on those plans monitored at a senior level?
8. How are you judging whether institutional care is appropriate or not and demonstrating that non-institutional approaches are routinely considered, and re-considered?
9. Do you offer significant resources to family carers who are struggling to continue to care, before spending large amounts on expensive institutional care when family care breaks down?
10. How are you ensuring that commissioners, clinicians, service managers and practitioners have the humility to treat individuals and families as expert partners at all times?
Read our report, Closing the Winterbournes, co-written with KeyRing on our website here.