Like thousands of other people, after watching the lovely Joanna Lumley at Gracelands, I bought the new Elvis album that, using the miracle of technology, has the Royal Philharmonic Orchestra backing his extra-ordinary voice.
While listening, my attention was caught by a particular song “If I can dream”. At the time I was thinking about the recent guidance and renewed efforts to help people with learning disabilities who are ‘stuck’ in hospitals to move back into their own communities.
For the last 30 years I have found myself working and, walking, alongside people and families ‘stuck’ within one type of system or another and trying to help them, in some small way. On qualifying as a nurse one of my first efforts was to move people from an old long stay hospital into ordinary houses on ordinary streets, my energy was high, I was young and full of fire and indignation at the terrible conditions in hospitals.
For me, it was also personal, having had a full on experience since childhood of the parallel world of the psychiatric ‘system’ for people with serious and enduring mental illness.
Since then, as they say, a lot of water has gone under the bridge and on reflection I am can see, unsurprisingly, that my early experiences have shaped the choices I made and why I have returned time and again to work directly with people ‘stuck’ in the system and their families. A very trusted and wise friend said to me, after I recently, and controversially, chose to return to working in hospitals after many years on the outside, “direct action Deb, I am all for that!”,and she was right, although I was not smart enough to conceptualise it that way.
So, how do these reminisces resonate with today’s agenda of Assuring Transformation? Well, 30 odd years is a long time and I can see that having been drawn into services repeatedly, has given me a priceless insight. By spending many years, up close and personal, with the people who are labelled challenging, offending, complex etc. etc. and their families, in community, in-patient, secure and prison settings, I have learned many things from them. Not least, I have learned that they are not to be messed about, by this I mean whatever is the next move, it needs to be carefully orchestrated in partnership with them, only they can know how they feel about their situation, we can only guess.
For a long time, we have made promises to people with learning disabilities and families that we have (collectively) not kept. Heaps of government policy and guidance have articulated visions and set targets and yet, we are still sending children and adults hundreds of miles from home. In my opinion, if we are to finally make this happen, we need to engage everyone’s talents (there is no benefit to be gained by elitism) and create an environment where everyone is invited to share the learning and experience. Its an old chestnut but together we really are better, and taking sides or increasing hostilities does nothing to encourage people to work together and we surely need to work together?
Importantly, we must keep returning to the people and families affected, those ‘stuck’ and those who support them day to day. Whilst we would all agree that living in hospital is no life, any change, good or bad, can provoke anxiety and resistance. So communicating a positive image of what life could be like in an ordinary house on an ordinary street, is important, but don’t forget that we equally need to provide the detail, the who, what, when and how. Vague, woolly, visions and wish lists are no use to anyone, to assure transformation we need a proper timeline, a proper resourced plan and help from experienced people to achieve it.
As said, there is no room for messing about with people and families lives and dreams, we need the detail to generate, in the words of Elvis, the “strong winds of promise that blow away the doubt and the fear”.
