Creating a groundswell

This is a guest blog from my colleague Anna McEwen:

At a Transforming Care conference organised by NHS England BILD in Sheffield,  I was delighted to deliver a workshop along with Shared Lives Ambassador James Rossborough and his Shared Lives carer Andy Cooke who are now a seasoned duo and brilliant advocates for Shared Lives.

As an ex-learning disability commissioner, I’m saddened by the lack of progress that has been made around the country since the atrocity of Winterbourne View.  Many of the challenges we heard about today are the same that we were talking about six or seven years ago in local authorities.  But what we did see and hear today was that, for some people, life has changed dramatically and that there are some really positive stories about areas doing things differently and empowering people to leave hospitals and institutions and live in the community.

I was heartened to see an agenda that started with people, not professionals; two of the three keynote speakers being people with learning disabilities or parents.  The conference was also co-chaired by the brilliant self-advocate Karen Flood, who made a great double act with Fiona Ritchie of Turning Point.

No one in the room could have failed to be moved when Carrie Grant (yes, the Carrie Grant off the tv!) spoke. Carrie is a mum to four children with special needs including two autistic daughters and one who has ADHD.  All have differing needs and have slipped under the radar, as is so common in autistic girls who very often turn to self-harm and even attempt suicide in too many cases.  How she leaves the house every day is nothing short of a miracle, let alone work, support other parents locally, deal with ‘professionals’ and school all on top of supporting her own children in four very unique and different ways.  Remarkable, as are all those families out there who are the real experts along with their children or family members and are best placed to work out how best to support them.

A couple of Carrie’s reflections were really powerful. Firstly – why are we sweating the small stuff? Why is our system trying to make young autistic people conform or ‘fit’, and excluding them if they don’t?  Do the small things (e.g. wearing school uniform) really matter that much that they are worth excluding young people and denying them the ability to learn with their peers? When we know what the implications can mean for those young people why do we continue to squeeze them all into the same mould?

The second, when asked what her priority would be for the next year in Transforming Care, Carrie said ‘creating a groundswell’ – creating a voice and movement that really starts to see parents and families as leaders and equal partners with the “professionals”, because until we really do then coproduction is just another tokenistic word and nothing will really change.

I was left thinking that while there are good things that exist out there, the damage done by letting young people down at an early age is irreparable and we must do better.

In our workshop we introduced people to Shared Lives, some for the first time, and shared stories of how people have moved out of hospital and institutional health settings into Shared Lives, changing their lives, physical and mental health for the better. Maybe if we were able to start this process earlier, to introduce young people and their families to Shared Lives carers, we’d be able to support them to develop relationships and stay in the communities they know rather than ship them off miles away and avoid that damage being done in the first place.  One mum in our workshop said Shared Lives is exactly what she wants for her 18 year old daughter, the alternative being hospital because there is nothing else – and what parent wants that for their child?

Anna McEwen is Executive Director of Support and Development for Shared Lives Plus: anna@sharedlivesplus.org.uk

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It’s still time to Transform Care

We are involved in lots of very promising work at the moment around Transforming Care: the work on which NHS England is leading to get people with learning disabilities and mental health problems or other ‘complex’ or ‘challenging’ needs out of medical institutions and into ordinary homes in the community. The programme is also aiming to reduce significantly the number of people who go into such institutions when they have mental health and other crises.

So far the various post-Winterbourne View scandal workstreams have been a great (ie bottomlessly depressing) example of what can happen when the full might of government and the wider system suddenly throws some of its best leaders, hundreds of millions of pounds and countless staff hours at a problem, backed up by all the pressure of targets and ambitious timescales: a target setting industry springs up, there are huge amounts of activity, much of it happening under almost intolerable stress, but the best spin you could possibly put on the results of several years of this is a gentle decline in the numbers of people in ATU. Some people have left, whilst others have taken their places. Where there is a bed, it will be filled. Collectively, we did lots of perfectly sensible things, but missed several essential things, without which real change could not happen.

Most importantly, ‘we’ – people working in leadership roles in the sector – turned out not be the right people to be making change: we didn’t have the courage or imagination to cede our leadership roles and power to people with learning disabilities and their families because there was neither the time nor resources to do so in our important and urgent work. Except that it turns out there was all the time in the world, because here we are five years later pretty much still on the starting line, and all the money we needed, because we have spent millions. People with learning disabilities and their families would, I believe, have led us slowly and haltingly in the right direction, with results no worse and potentially a whole lot better.

I’m optimistic that the work we are now doing with NHS England will get real results. We have had really strong interest from CCGs who are expressing an interest in the NHSE funding to demonstrate and scale up Shared Lives as a health intervention, not just for people with learning disabilities but lots of other groups as well such as people with mental health problems and older people leaving hospital. We are also developing an alliance contracting model in which we hope Shared Lives provider organisations and other like-minded providers with different models will work together, with the involvement of advocacy and self-advocacy organisations, to put a different offer in place. And we are a strategic partner in the IPC programme, with funding to support the IPC areas to think differently about providing personalised health care in general and Shared Lives specifically.

We’re doing this work because one of the intractable problems at the moment is that pared-down commissioning teams can see that new models might be better, but don’t have the capacity, expertise or relationships to develop them. Providers with good models can’t develop new models without a commissioner helping to define what is needed and in a position to purchase it. Commissioners are reluctant to block purchase care in any case: they are aware they are supposed to be helping individuals to make very individual choices. But without new models of care to choose, individual choice remains theoretical, so we have the worst of both worlds: neither old-style commissioning using its buying power to demand and invest in a better model, nor a functioning marketplace in which personal budget holders can find providers with something they want.

Our work will bring Shared Lives as a new model of care to many more people, but Shared Lives of course cannot be the only solution, and making it available doesn’t on its own shift the current power imbalances. Without changes at a deeper level, I worry that care will remain untransformed for too many people. Here are four changes it is not too late to make:

  1. We need a contracting model which pays for outcomes not time, which any commissioner and provider can use. Where care is paid for by the hour, the incentive for providers is to maintain, not reduce, extremely high levels of support, even where people no longer need it and the ‘care’ is now getting the way. Our alliance contract model will attempt to build this kind of contracting model and our outcome measuring tool will be one way in which those outcomes can be measured, but models of that kind need to pushed out right across the system.
  2. We need to build marketplaces in which people who are receiving care and their advocates can share limited information with suitably vetted providers, so that providers can start making offers to people who have a personal budget or Personal Health Budget, with the support of brokers. This will require investment but save more money than it costs.
  3. We need to build proper scrutiny into the system, led by people and families. Rather than the patchy system of Learning Disability Partnership Boards which work only when commissioners choose to engage with them, but are essentially an optional extra, commissioners and clinicians who are currently unaccountable must be obliged to report regularly on progress to a group led by self-advocacy and families’ organisations. This will focus their minds and make failure and stasis less of an option.
  4. We need ways to move resources from the state system into support for people who live in the community or with their families, to avoid the current cliff edge where a family in crisis can be told “there’s’ no money” one day, only for thousands of pounds a week to be found the day after the family collapses, to pay for institutional care. One way to do this would be for commissioners to be obliged, whenever funding is identified for emergency or medical care, to offer that money first to the existing provider, or to family carers, for them to draw up an alternative spending propose to sustain family or community care. Another would be for individuals to be able to share in savings made when a medical care package is replaced by community care, to build up a contingency fund to spend when in crisis.

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