DMA Blog 2a

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.

DMA Blog 2bFor 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.

DMA Blog 2c