You see, sadly, these failures are familiar to me.
My daughter, Chrissy, who's now 37, spent 4 years in another private hospital like Winterbourne View and Cawston Park after being repeatedly let down by inadequate support provision in the community. During her hospital stay, I reported unexplained bruising on her neck; a safeguarding investigation was launched, bringing the hospital under scrutiny. However, Chrissy’s injuries were subsequently attributed to self-injurious behaviour. I had never seen bruising on her neck before and it was difficult to understand she could have caused these injuries herself. A year later, the hospital came under fire in the press for failing all the standards set by the Care Quality Commission, including the one to prevent abuse.
The 2011 Winterbourne scandal had shone a spotlight on some of the practices that go on behind the locked doors of these hospitals but still, it seems that little has changed. What will it take?
These units are run as total institutions, similar to the long-stay hospitals that were closed during the 1980s, which was meant to herald a new era of social inclusion for people labelled as learning disabled. The resulting gap in the market provided a lucrative business opportunity and a number of independent hospitals financed by private equity companies were set up. A report commissioned by NHS England in 2014 called for an end for the system where these independent hospitals are financially incentivised to keep patients in for as long as possible. However, despite levying charges of up to £26,000 a month per patient, basic standards of good practice are proving remarkably difficult to maintain in many of these services.
Nevertheless, the hospital was Chrissy’s best chance. Despite its problems, another group of professionals at the hospital were now challenging the disempowering funding agendas and professional vested interests that were preventing Chrissy from getting the support she needed. This knowledge informed a discharge plan that provided indisputable evidence of Chrissy’s complex support needs, unclouded by funding agendas. The interventions and support Chrissy needed should have been available in her local community but they were not.
Moreover, in our experience, the poor standards in these hospitals are also reflected in care in the community. When Chrissy was ready to be discharged from hospital, Mencap and the Challenging Behaviour Foundation included her story in their Out of Sight report (Mencap, 2012). They said the Government is very clear that people with a learning disability should be supported to live in their own communities; it is difficult to understand why, when Chrissy was ready for discharge, there were so many barriers in place and we had to do so much fighting to overcome them.
Chrissy finally moved into her own home with 24-hour 2:1 domiciliary care support in 2013. It went well at first as she always had a key worker/team lead in place but, a year later, it was bought out by a big private investment company and the quality of care gradually nose-dived. Chrissy’s service was being managed remotely by managers who oversaw several services and a succession of them left. I was told by one manager who left that she felt burnt out and unsupported. She said that she couldn’t do her job effectively because she was always filling other management gaps and fire-fighting elsewhere. Staff training was minimal, communication between the office and staff working at Chrissy’s home was dire to non-existent, and morale amongst Chrissy’s support staff was very low. I reported problems to the CQC, who gave the service an overall ‘good’ standard of care. Having once worked as an ‘expert by experience’ with the CQC, I knew what good care looked like and reported that my main concerns lay in two inspection areas covered – the service was neither responsive nor well-led. The inspector did not call me and there was no follow-up. I became exhausted and demoralised by trying to fill in the managerial gaps myself but was told by various health professionals and some staff who worked elsewhere as well as with Chrissy that ‘this was as good as it gets.’ Whistle-blowers raised concerns but did not feel that management had listened or taken action.
However, there was no way I could give up on Chrissy by accepting these awful standards of care and support and, thankfully, neither could the case-managing NHS commissioner. Effects on Chrissy included a long-term refusal to engage in personal care and just wanting to stay in bed. The NHS commissioner circulated Chrissy’s profile to care agencies and a local not-for-profit group of charitable enterprise got in touch. One of their managers knew Chrissy of old and had worked exceptionally well with her. This organisation now provides her care services. They have far exceeded our expectations by starting to turn things around in a few months. Chrissy’s first bath and hair wash in months was a cause for great celebration! She will always present significant challenges to services but I feel like this new service has given us our daughter back.
