[Note: I deliberately refer to research and projects from 20-30 years ago in this piece. One of my motivations for writing this blog is to highlight what has happened in the past because our institutions seem to have so little memory and this too often means the same mistakes are repeated again and again.]
On Monday 24th February, Southern Health NHS Trust published an independent report into the death of 18 year old Connor Sparrowhawk, which concluded that his death was preventable.His mother, Sara Ryan, writes a wonderful blog about her family’s life with, and love for, Connor, with a searing account of the impact of his death and of the further damage that Southern Health has wrought by the way they reacted (summary here).
Since the report’s publication, a number of blogs have been written which share in Sara and her family’s grief for their loss, highlighting the various findings and implications, and the fears of other families struggling to get support (a summary list of these is here).
If there is one thing we need to learn from the Connor Report and all those preceding it (including the Confidential Inquiry into premature deaths of people with learning disabilites, which found that over 1200 people with learning difficulties die prematurely each year) it is that the lessons learnt in the past have been the wrong ones. Otherwise it wouldn’t keep happening.
After every one of these inquiries, those responsible for poor and/or negligent ‘care’ say that they have ‘learnt lessons’ and put policies and procedures in place to prevent these things happening again. However, as Rich Watts pointed out , “the independent investigation found that Southern Health had policies, guidance and pathways in place that should have ensured there were minimum standards of care, but that all of these were simply paperwork, and didn’t translate at all into practice”.
We have mountains of strategies, policies, procedures which are about best practice, involving service users and families, and ‘person-centred care’. Many of these have followed inquiries and research, and are full of good intentions. But the lesson is that writing it down in documents, which are often in fairly inaccessible language, for circulation to managers and down to front-line staff within organisations, doesn’t work.
We should have learnt by now that most ‘best practice’ examples describe face to face contact between disabled people, families, and providers of services. The ‘best practice’ quoted usually flows from this face to face contact, and from listening to each other, from trying things out, most importantly from working together with individuals and those who love them to sort out problems.
For me, one of the key findings of the report was that: “We found no evidence to show that the experience and knowledge of CS’ parents were captured at the beginning of his admission or included as part of his risk assessment and care plan.”
This failure to acknowledge and use the experience and knowledge of family members is nothing new when it comes to service responses to young people with learning difficulties. The experience described by Connor’s mother is only one recent example of many which echo Ann Shearer’s comment over 30 years ago: “There is even evidence that the patterns of official help actually make life harder for families….” (Ann Shearer, 1981, Disability: Whose Handicap?).
There is so much research illustrating the difficulty that families have engaging with services and getting professionals to listen to them, particularly in the context of young people’s transition to adulthood. As Mark Neary says: “Why are families considered the enemy as soon as our dudes move into adult social care? A lifetime of knowledge is instantly dismissed and the professionals invariably adopt a “we know best” position.”
There is also a wider context which concerns the decisions made about what services are provided and how. People with learning difficulties and those who love them are excluded from these decisions but they have to experience – and sometimes suffer - the consequences. However, the report into Connor’s death does not cover the role of Oxfordshire Clinical Commissioning Group or Oxfordshire Social Services, who are responsible for whether the right support is commissioned in the first place.
For many years, research has identified problems with how decisions are made about what services should be provided. As Tony Ryan concluded in 1998 “The biggest problem is with commissioners because commissioners, here, are somewhat removed from the day-to-day reality” (Tony Ryan, 1998, The cost of opportunity: Purchasing strategies in the housing and support arrangements of people with learning difficulties). There may be a different commissioning structure today but the problems remain the same – and these problems can only be avoided by placing people with learning difficulties, self-advocacy groups and family members at the heart of the decision-making. If we asked not only people with learning difficulties themselves but also those who love them how we as a society should be responding to their needs, maybe Assessment and Treatment Centres wouldn't even exist. We need much more than so-called 'user involvement' – instead policies and services for people with learning difficulties should be generated by them and by those who love them.
Commissioners are acting on behalf of us all - using public money to purchase services which are supposed to add to the quality of people's lives. Connor was in the unit because the support which he and his family needed wasn't provided - local health and social care commissioners need to be asking why not and what help do they, as commissioners, need from people with learning difficulties and their families to enable better commissioning decisions?
I have three practical suggestions which might help to avoid the wrong lessons being learnt from this important report into such an unnecessary death:
1. Open up the commissioning of health and social care services for people with learning difficulties to self-advocacy groups and family members. Don’t start with the services you already commission but with a blank sheet of paper to identify what kind of support would really make a difference. Throughout the commissioning process, use the Open Contracting Principles – signed up to by the UK government – and adopt a policy of ‘affirmative disclosure’.
2. Ask self-advocacy groups and family members to monitor services. The idea of ‘lay assessors’ is not a new one and commissioners and providers should be placing people who use services and their families at the heart of monitoring how each service is doing.
3. Involve people with learning difficulties and family members in all the different stages of recruiting staff – from drawing up job descriptions and person specifications through to interviewing. As Carl Spaul says “attitude and values are key to making people feel empowered and valued” and people using services are very astute at identifying the attitudes and values which make for good quality care.
All these three things have been done before. Unfortunately, the experiences and the lessons learnt have not always been built upon and have sometimes been lost. They need to be revisited. One example of involving people with learning difficulties in the commissioning process was when, in 1994, health and social care commissioners in the London Borough of Newham invited a local People First group to work in partnership with them to both commission and monitor services. Four ‘speaking up’ groups were set up which over a period of two years influenced what services were commissioned and provided (People First, Newham Social Services, East London and The City Health Authority, 1996, Putting People First: On our way to do things better).
There are also a lot of lessons to be learnt from people with learning difficulties monitoring and evaluating services. Again this has been done over the last 20 years, one early example being when People First evaluated services for people in long-stay hospital placements and in the community in the London Boroughs of Sutton and Haringey (People First, 1995, Outside but not Inside …yet! Leaving hospital and living in the community: an evaluation by people with learning difficulties).
In the mid-1990s, the Joseph Rowntree Foundation recognised that more and more organisations were involving people with learning difficulties in recruiting staff and commissioned the Norah Fry Research Centre to explore the extent and benefits of this.
It would be more useful to learn from, build on, and emulate these types of experiences than to write yet more policies and procedures about what services should be doing. It is extremely distressing that the long history of inquiries into ‘preventable deaths’ and poor care tend to find the same thing again and again. And even more distressing that the response is always, "We've learnt from this, we've put in place guidance/policies/procedures/changes". The most important thing to learn from looking at the Connor Report and the many many others is that whatever we've 'learnt' hasn't been the right lesson.
We also need to face up to a systemic failure to really value the lives, views and experiences of people with learning difficulties (and a tendency to devalue the knowledge, experience and role of parents and other family members) – which arguably amounts to institutional disablism. Why don't those responsible for commissioning and managing such provision pay more attention to how people like Connor, and those who love him, are experiencing the service, and what is it adding to his life? This question raises issues not just for providers and commissioners but also for us as a society.