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