2 Working together

Supporting people is rarely undertaken in a bubble. You will know from your own experience that there are likely to be many different professionals involved in a person’s care, particularly as they get older. Some people are also supported by family, friends or advocates who will need to be involved in discussions and decisions about planning ahead.

As a practitioner, whatever your role, you will probably also be aware that the wider ‘system’ of health and social care can be a complicated landscape for people with learning disabilities. When we think about supporting people with learning disabilities as they age, it’s clear that many different parts of the system may, at different points and to varying degrees, need to be involved. What are the roles and responsibilities of different parts of the system and how do they all connect?

Activity 2 Who does what, why and when?

Timing: Allow about 10 minutes

Watch members of our panel discussing who may need to be involved in a person with learning disability’s care as they get older. As you watch, make notes on any comments or recommendations that are particularly relevant to your practice. Does anything the panel say surprise you? Do any of their suggestions have implications for your ways of working?

Download this video clip.Video player: gopa_2_session6_video2.mp4

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Transcript

BEN

Who should be doing what and when is a really, really good question, and it is a big question. My immediate-- my gut instinct is to say, well, it’s all of our responsibilities. But then the converse of that is, well, if it’s everybody’s responsibility, then, really, it’s nobody’s responsibility. It won’t surprise anybody to know my personal opinion is the system is a big beast. And it’s difficult sometimes to get parts of that system to communicate with each other. In terms of roles and responsibilities-- so as a community nurse, I saw it as my role to support somebody with their physical health and also to support people with any sort of emotional or psychological difficulties that they were having. Should any of those difficulties be in part because of difficulties at home or in their social environment, then I would then liaise with a person’s social worker where they had one. If they didn’t, then I would liaise with social services to find. And then I believe that it’s social services’ role to support people with any social difficulties that they’re having, whether that be within social activity, or housing, and things like that.

GPs and primary care and, obviously, colleagues in acute care is an interesting one. I’ve seen over the years that I’ve worked with people with a learning disability and their families some things really improve in terms of GPs, in terms of learning disability registers and things like that. So things, in my opinion, still aren’t 100%. But definitely, there’s been a more positive shift towards GPs being on board in terms of supporting the population of people with a learning disability. I guess, again, linking it back to when I was a community nurse, it’s a GP’s role, in my opinion, to have oversight of somebody's physical health care, and whether that be whilst they’re living at home, in the community, or whether they’re in an acute hospital, and also to liaise with the correct services as and when they’re required.

One of the good things that I’ve seen in my current role-- I’m really fortunate to travel out and about and meet people working in different environments-- is how acute services, so acute liaison nurses and acute liaison teams, liaise with their colleagues in the community learning disability teams. That’s been a real positive shift, I think, in the last-- well, prior to the pandemic-- I’d say two years prior to the pandemic, there’s been a real focus on community learning disability teams and acute liaison services working more closely together. It doesn’t happen everywhere. But where it does happen, it really, really seems to work well and have really good outcomes for people. And I guess as part of my role working in the national nursing directory is to highlight that to the wider system, to say, look what works, look how it works when people work together. Are we there yet? No? Can we get there? Absolutely. I think we can get there.

One of the things that, especially over the last, I don’t know, four or five years, has become really clear to me, both in my current role and as a practitioner in general, is that we’re sometimes not very good at inviting the voices of our greatest critics. And actually, in my opinion, the voices of our greatest critics, generally, when we invite that into the mix, that’s where the answers lie.

GAIL

And I think the most important thing is them valuing me as his mum and that I am part of the team that supports him, that the families in Guy’s house are all considered part of the team. We’re quite a useful resource. We’ve got that history.

We’re increasingly not doing it on a day-to-day basis. But we know our relative pretty well. And for somebody just moving into that sort of supported living environment, you know them better than anyone else. And I think it’s respecting that and seeing that not as a problem but as a bonus to have family around that, why wouldn’t you want to involve family when you know how important that family member is or that family is to the person that you’re supporting. Why wouldn’t you want to have a good relationship and involve them in everything and keep them? Far too often, that kind of ‘We’ve got them now’, or the parents being difficult or-- it’s usually the parents-- the family being difficult, interfering, ‘We do things our way’, I would run a mile from any kind of organisation that didn’t have working well with families as one of its priorities.

End transcript

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Discussion

Ben began by acknowledging the complexity of the system that supports people with learning disabilities and the challenges involved in getting different parts of the system to communicate with one another. He identified GPs as having a key coordination role regarding people’s health, and social services (i.e. social workers) in relation to social issues, such as housing and care packages. Ben also drew attention to examples of learning disability liaison nurses in hospitals communicating effectively with colleagues in the health and social care services in the community – it is positive to hear his account of good practice in this area. Ben – like Gail – also emphasised the importance of people with learning disabilities and family carers being meaningfully engaged in discussions about planning ahead. It is absolutely critical that practitioners learn to value the input of those who have known the person the longest as well as currently, listen to their advice and experience and involve them in decision-making.

When supporting an older person with learning disabilities it is important that you understand which other professionals may need to be involved in that person’s care (or in making decisions about the person’s care) and when. It is also essential to engage with the individual themselves, and their family carers – as Ben Briggs commented, this is usually ‘where the answers lie’.