[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.
