The DMA Blog

What’s the worse that can happen?

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Written by Debra Moore

In my last blog I reflected on the movement of people with learning disabilities and autism, from hospitals to ordinary houses on ordinary streets.

I continue to be pre-occupied with this and why progress is so slow? Don’t get me wrong, I know that many people have moved over many years but why do we still have people who are ‘stuck’ in hospital when they are well enough to leave?

I know there are simplistic answers offered to this question that range from the providers/doctors/nurses wanting to keep them in their ‘clutches’ to commissioners who are absent/lazy/unmotivated to change things. I largely don’t buy into this and these days more often wonder if we are asking ourselves the right questions?

A conversation with my colleague Dave Atkinson, prompted me to think about how we repeatedly measure the performance of people with learning disabilities with a harder rule across a range of issues and how this negatively affects their lives.

For example, when I had my babies, no one came around to check my parenting skills with the forensic scrutiny that I have witnessed mothers with learning disabilities endure. I was free to work out how best to achieve the tasks of looking after my babies within our family resources and skill set. For example, working full time on shift work meant (horror!) that I had to rely on baby food in jars rather than make my own. I had to work out, for each scenario, realistically what was the worst that could happen?

It strikes me that asking the question ‘what’s the worse that could happen’ regularly when considering the situation of people stuck in hospitals we might free ourselves and in turn, free them much quicker. Dave was sharing with me some insights into recent CTR meetings he had attended. We talked about the issue of how teams can become pre-occupied with how ‘ready’ someone was to leave hospital. The implication been if they were not ready enough, then they may return to hospital having suffered a relapse or setback.

This in turn can set off a train of actions that entails the individual having to move through what is often described as a ‘care pathway’ that in reality is often no more than a building based step down to increasingly less supervised care. Too often, at each stage, the person has to prove their ability to cope in the setting offered rather than the care and support been tailored to bring out the best in them.

Surely, we should be asking people and their families what will it take for them to live where they desire and prioritising that? Of course, there are a minority of people who due to legal restrictions MAY need to demonstrate that their previous level of threat to the public is reduced.

So, a pause of thought here to think more broadly about the many thousands of non-learning disabled people who are discharged from general hospitals every day after having life threatening or serious operations. Similarly, those people with severe and enduring mental illness admitted and readmitted many times over many decades without question. If we applied the same approach to these people, that we apply to some people with learning disabilities in some hospitals, then they would, I suspect, not be very happy!

Now, I am not saying there are never problems with this approach or that to do this you have to be pretty sure that the community services and family are in a situation to be able to pick up any problems early and provide relevant support. I like many others have experienced relatives been discharged with the expectation that the community team can provide a lot more support than in reality they have capacity to do so.

This brings me back to people with learning disabilities and autism and their hospital discharges and to wonder if when we are ‘judging’ their readiness are we really focussed on them or are we subconsciously basing our decision on the readiness of the community to receive them? This is a subtle but important difference as it is places a burden and expectation on the individual to change something about how they are/behave when actually, the behaviour change needs to be by service land.

As a nurse, thinking about this then brings me to the role we play in this and how we could positively influence the situation to ensure that people are not stuck in hospital or in other buildings of a ‘care pathway’? My guess is that there are factors that help/hinder nurses to support the person and their family to reach their goals swiftly and I think they are worthy of exploration. To this end we are going to facilitate a discussion with nurses at our next network event on the 17th December.

In my experience, for many people the worse that could happen may be that they may be bored during the day whilst a suitable activity is sourced e.g. a job? For some, if they have a diagnosed illness, say bi-polar disorder, in time they may relapse and need to be re-admitted to hospital for treatment.

In either scenario, my personal opinion, is that the worst that could happen is not enough to keep someone in a hospital ‘just in case’ and deprive them of their liberty.

Strong winds of promise………

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Written by Debra Moore

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”.