Ep5: Yes to community-based support

Ep5: Yes to community-based support

 

Speaker Key:

PC              Paul Crompton

AP              Alac Pengelly

 

00:00:00

PC              Hello and welcome to Yes to You, the Lifeways podcast. Lifeways is the UK’s largest team of support professionals who provide support for adults living in the community. In this episode, you’ll be learning about why we at Lifeways believe that community settings such as supported living services and not private specialist hospitals are vital for most longer-term support for adults with varying complex needs.

                   I’m Paul Crompton, Marketing and Communications Manager at Lifeways and your podcast host here. I’m speaking to Alac Pengelly, our Regional Director for the South Region. Alac is in charge of an area stretching from Kent in the South East all the way over to Wales and Cornwall. Alac is one of seven Regional Directors at Lifeways who together run our 1,500 supported living and residential services.

                   Alac, welcome to the podcast.

AP              Thanks Paul. I’m glad to be here.

PC              Awesome. To start with the first question, I understand that you began your career in community-based support around 30 years ago, is that right? Could you just give us a little bit of career background about yourself?

00:01:09

AP              I was a 19-year-old support worker just as the Community Care Act came into play, which in essence closed long-stay hospitals in the UK and moved them into residential care homes. I was a support worker between then and now, and I’m over 50 years old now. I’ve been working in community-based services, whether that’s residential care or supported living.

PC              For how much of that time at Lifeways then?

AP              The last four and a half years with Lifeways.

PC              Alac, how would you describe your job in very simple terms?

AP              I would say that I’m overall responsible for the regulation of care homes, supported living environments and supported living offices. Coupled with making sure that the services are of a high quality and make some commercial sense for Lifeways as an organisation.

PC              Moving back earlier in your career, at what point did you notice that the model of private specialist hospitals wasn’t as effective, generally?

00:02:23

AP              I think fairly early on. Part of the training I undertook, I had the opportunity to go to different hospitals and see what was actually happening. Coupled with reading about events and watching some videos on Channel 4 that did an exposé of some long-stay institutions.

                   It was very clear if you watched the videos or went to the environments that actually they weren’t meeting the needs of the people that were living in those environments. In fact, some of them were quite shocking in how they supported people and how they presented.

                   I think… Paul, could you imagine living with 1,200 people in one building? That’s amazing. That just… Would be awful, I think, in reality.

PC              Absolutely. That really doesn’t sound pleasant.

                   Aside from your own personal lived-in experience, what’s your evidence base for belief that more adults need support in less restrictive community-based models?

AP              I think if you look at any of the stats the government has recently published, the community of the long-stay hospitals have actually increased over the last ten years and it continues to do so now. The use of physical intervention is quite high in long-stay hospitals. The use of medication to tranquilise people to mask behaviours has increased in the last few years.

00:04:13

                   The reality is if people are given choice and the ability to choose their environment that they that live in and personalise it to their own desires or wishes and needs, then the behaviours that we experience will decrease.

                   If we can imagine being in our own house or living environment and not being able to be given choices for food? Whether you can go out and get a paper? Whether you can go out to the cinema? And without going through quite a lot of hassle in making those personal choices that we all make every day of our living lives.

PC              Are there cases where private specialist hospitals are the right setting for adults with particularly complex needs? Or do you believe these facilities should be mainly only NHS-led and only in extremely specific circumstances? Or at all?

AP              I think there are always cases when people need a short-term intervention. But a short-term intervention should be three to six months, with a discharge date at the end. It shouldn’t be the case of someone can move into a long-stay hospital because they are ill at that point, and then five years later that they move out.

                   If you as an individual went into hospital and were living there five years later, for example, then surely that would be a unique experience. But it happens with people with learning disabilities and long-term mental health conditions quite regularly, and probably too regularly.

PC              Although this definitely isn’t a pandemic-themed podcast, do you think the events of the pandemic over the last couple of years, have they to any kind of change in the way that we think about people living in a proximity to each other?

00:06:14

                   For example, for the benefit of our listeners, I’m of the understanding that out of almost 4,500 people we support not a single person, mercifully, has passed away as a result of contracting Coronavirus.

                   A large part of that could very well be that most of the people who live in Lifeways services are in their own home and not in a larger residential service, which obviously in some cases proved to be hotbeds for infection.

                   I don’t know if that question’s relevant, but is there that shift away, if you like, from large facilities in any case?

AP              I think if you live in a large group setting then there is always going to be a chance to pass on any contagious disease. With COVID then, you will have a better chance to catch it if you’re living in a group setting. If you’re living in a small flat with the relevant support going in, being given to you, then you will be in a better position to fend off any contagious disease.

PC              But of course we know that in many cases group settings are a great form of support for individuals. Do you think we’re likely to see a lot smaller group settings moving forward in cases where there are residential services?

AP              I think residential homes will become smaller as time goes on, yes. Particularly for people with learning disabilities.

                   The commissioning patterns that we see, generally speaking, local authorities and CCGs don’t like to see homes much bigger than six or seven people, at the biggest. They are for people with a particular set of needs that maybe can’t be met in a community setting in a normal street and needs to have a residential care home of some description. But that is, again, still an exception rather than a rule.

00:08:21

PC              Could you, for the benefit of our listeners, describe… We know that every single person is unique, but could you perhaps describe some commonalities of people that we support. I’m talking for example their backgrounds, their needs, their ages where they come from and where they’re going.

AP              Typically someone would be of adult age, meaning anywhere between 18 to 65. Would have a diagnosed learning disability, so therefore funded through Social Services. They might have some autistic traits within their needs. And would just need help with day-to-day living and day-to-day access in the community and work and college.

PC              In your region, very roughly, what percentage of people live in supported living services, which I would also include shared houses in that category? And what percentage live in residential services, roughly?

AP              80% are supported living and 20% residential care.

PC              Just to break it down a little bit further, within supported living, what percentage would you say of people have entirely, for example, they might have a whole house to themselves, or a purpose-built flat versus people living in shared houses?

00:09:45

AP              I would probably say 70% have their own one bedroom flat, two bedroom flat, and the rest would have shared accommodation of some description.

                   People that have a shared accommodation, they would have had a choice about who they live with as well. So it’s not a case of, there is a bedroom here and you don’t get a choice of who you live with. There would be a discussion and compatibility assessment about whether people can live together.

PC              A lot of the people we support that I’ve had the privilege of speaking to, a lot of them… Say for example, I was speaking to someone the other day who’s maybe in their twenties or late teens and they’re moved into their own flat with Lifeways and it’s one of these… It’s a brand new flat, I mean they are the first tenant to ever live there.

                   They’re absolutely having the time of their life with the independence that they need and the support when they have it. Very much the best of all worlds. It’s great to see all these, if you like, new-build flat schemes coming up which Lifeways supports.

                   Is this a trend that we’re likely to see continue? Is this trend under threat with, for example, rising costs of construction, possible shrinking council budgets? Is this positive development likely to be squashed?

00:11:06

AP              There is always a possibility of those developments not coming through to fruition. For example, we’ve just worked with Portsmouth Council to commission a 28-beded… Well, I say beded, it is flats, scheme in the city limits. And that’s great. But that development we’ve got to realise costs £6.7 million. To replicate that across… In other areas, a council has got to attract the investment and have the desire to put that kind of scheme in place.

                   Therefore, with shrinking budgets, with rising construction costs of course there’s going to be a degree of resistance. Or not resistance actually. Are people going to be able to afford to do it? That’s the question. The answer to that question is probably in the next few years probably not in some cases, which is going to be a real shame for some people that we will be supporting.

                   Because the modernisation of social care needs to continue, whether it’s through a period of growth or a period of shrinkage for councils. It will be really interesting to see what happens with that. I think it’s a watch this space kind of moment, isn’t it really? And see what happens.

PC              Let’s hope it’s positive.

                   A saying I recall reading from former NHS England Chief Simon Stevens was, think like a patient, spend like a taxpayer. How do community-based settings fit within that mantra? Is this a much more expensive way to do support? Is it a much cheaper way? Most importantly, is it a… We know it’s an efficient way, we know it’s an effective way, but how does it work in terms of costs for local authorities?

00:13:06

AP              I think if we look at how supported living is paid for, the costs of the accommodation is taken out of someone’s support package so the local authority pays purely for some support. Say if someone requires 100 hours of support, then a local authority pays for that. How an individual then accesses rent and living expenses is through the normal benefits process that you or I would go through.

                   Within a specialist hospital residential care setting what we’re looking at then is around an average spend for a local authority or CCG of £3,000 a week for someone’s needs but that includes their hotel, all their living expenses. In reality, a supported living environment will always be cheaper than a residential care home or a specialist hospital.

PC              When you say hotel expenses, just to clarify, you mean for example gas, water, electricity, internet and so on and so forth?

AP              And just general living expenses.

PC              What makes supported living so much cheaper and also how much cheaper, very roughly?

AP              Probably out of a £3,000 a week fee for a specialist hospital, then a supported living environment would probably be maybe £1,000 cheaper a week, depending on someone’s support levels in the very first place.

                   How is because it allows someone with a learning disability to access benefits that you or I could access if we weren’t employed. Their living expenses would be paid through the benefit system and the local authority then pays for the support that someone has or needs to have to enable them to live their lives.

00:15:08

PC              To move on more about effective support, can you talk or give some examples of people we support that you know and have worked with, really just success stories? People that have perhaps come from private specialist hospitals to a Lifeways service? Or people whose lives have really been able to be turned around as a result of moving to a less restrictive, more independent mode of support?

AP              I think there’s a few. A gentleman I used to work with, a while ago now, he was admitted into a service that was part of the portfolio that I worked with. The gentleman in question had some very high-level needs, particularly around self-induced behaviour.

                   Working with the PBS team at the time, we were able to identify why the gentleman exhibited some of the behaviours that he did. In terms of frequency of incidents, he went from probably ten to 15 incidents a day to probably ten a month.

                   The environment that he lived in was tailored to meet his needs. The support workers were trained and tailored to meet his needs. Where potentially in a specialist environment you have support workers and nurses that are employed by the hospital and not necessarily tailored to meet the someone’s needs. And indeed, sometimes interviewed by the person that we support.

00:17:00

                   In that particular case, obviously the gentleman couldn’t be part of the interview, but their advocate and their next of kin was involved in interviewing on occasions and when they could. They had a really good idea of the person and the type of person that would successfully be able to work with the individual.

PC              Without descending into a psychobabble, to what extent does it work that… For example, when we are in hospital we may, as well as actually being a patient in fact, we may also role play being a patient. Equally, when we are in a hotel, we may role play being a guest.

                   If you get the drift of what I’m trying to say here, to what extent does that idea of putting someone in a more positive, independent environment make the difference in terms of the person’s overall wellbeing? And even the way that the person thinks about themselves? For example, from patient to young individual living their life?

AP              I think then people have to be trained in what is called active support. A support worker intervenes when a person needs that support, rather than on a constant basis.

                   If you’re living in a specialist hospital, yes you might have a one-to-one attached to you to meet your needs. However, it is much more of an environment where you might be living with ten, 15 other people and there would only be maybe three or four people on duty to meet your needs.

                   That support can’t be always customised at that point, or tailored to meet your individual needs. It’s much more of a blanket… You have four or five people to support ten, 12, 15 people and it becomes much more difficult at that time to have a person-centred approach in the support that you give.

00:19:11

                   And also, within a hospital setting you have a… You are in hospital, you are admitted to a hospital and not living in your own house. The purpose of the two settings are different from that respect.

PC              In your meetings with funders and commissioners do you ever have to, if you like, convince funders and commissioners that the people that they are currently supporting would be better off in a less restrictive environment?

AP              Thankfully no, not anymore to be honest, which is quite nice. It’s because the fund… The commissioners that we work with, and over the South it’s quite a few, I think they’ve seen over the years that a hospital environment isn’t usually right for somebody that has a learning disability. I think that’s a key, key thing.

                   That’s with the change in view. Acts of Parliament like the Community Care Act and the Health and Social Care Act that gives choices to people with learning disabilities. Where maybe at the beginning of my career those choices weren’t there necessarily for people that were in need of support.

00:20:43

PC              I’m somewhat reminded of the politician’s joke at this point where the politician is saying, I need to see where the people are going so that I might lead them. And equally in this case… And I’ll clarify exactly what I mean by that joke. In this case, to what extent are private or independent sector providers leading in terms of better, more modern modes of support? Or to what extent are they following?

                   For example, I understand that supported living in the UK came about as a result of a Welsh government initiative. I think, was it called the All Wales Strategy in the 80s? We very much see there, government is leading very, very clearly and the private sector, the independent sector is following. Is that… What is, if you like, the lie of the land in England specifically today? In effect, and maybe it’s not the right question, but who is leading who?

AP              I think it’s actually become, in my experience in the last few years, much more of a joint perspective from local authorities, CCGs and private organisations.

                   For example, if I have an idea around how to support a group of people and I go to a commissioner and discuss that particular idea, then often that’s taken on board and we work together to make that happen. Which is absolutely great.

                   Sometimes that’s in a tender form, sometimes that’s as a bespoke piece of work, but it’s very much a place where local authorities, CCGs and private providers are able to voice their ideas jointly and work on them jointly. Which is great, to be honest. It’s a much more balanced approach.

                   Government initiatives and council initiatives I think will always now, for the foreseeable future, be about bespoke packages of care for people in their own houses. Their own house meaning either a flat scheme such as Patey Court as I mentioned earlier, or just a house in an everyday street with neighbours that may not be in the seat of care.

00:23:14

PC              Just to clarify for our listeners, Patey Court refers to the, I believe, 28-flat scheme in Portsmouth that’s coming up. Is that right?

AP              Yes, it does. It’s a great building that provides a high-quality environment for people with learning disabilities.

PC              I’m glad that you brought up that idea of cooperation between providers and local authorities because that brings me to my last question that hinges on this collaboration versus competition spectrum, if you like. How do you think us as providers might work better with local authorities and NHS bodies?

AP              I think there’s always discussion, debate within the setting or the area that we work in. I think it’s about providers appreciating that councils have a limited budget to provide care, but councils being realistic with providers around what can be provided for whatever they are able to pay for that service. I think recently I seem to have detected a difference, and I’ll give you a really good example.

00:25:02

                   Within the South we have a project where I want to pay a real living wage to everybody within the South. I’ve started talking to the multiple councils that we work with and local authorities. At the moment, we’ve got another three councils to negotiate with so our staff receive real living wage. Out of probably 20, I think it is, councils so far.

                   At the moment every council that we’ve approached, after having a meaningful discussion, we’ve managed to negotiate an increase for our staff teams to be paid real living wage as an absolute minimum. Sometimes more, depending on the geographic area.

                   Now, I gave myself two years to do this project. In reality so far, it’s taken 11 months. But I think that’s because of the local authorities willing to engage in the conversation and then realising actually, it’s not a private sector organisation just increasing their profit margin. It’s about reinvesting into the staff team.

                   I think the reinvestment into the social care sector is still very high on the agenda, and I think councils and local authorities are on board with that journey with the provider sector.

00:26:36

PC              I’m glad actually that you’ve brought up also recruitment and wages in your area, particularly as we know the South East, the region that you cover, has some of the highest costs of living in the country by far. And what with the staff shortage in general across the nation, how do feel this is going to play out?

                   Obviously, I’m not asking you to look into your crystal ball. But how do you feel this is going to play out in terms of the balance between there actually physically being people who are willing to and want to work supporting others? Coupled with the money for them to be paid and the money for them to be motivated?

AP              I think over the last few years with the events that we’ve seen, and COVID not being the least of them by a long way, then I think the value attached to being a support worker or working in social care has increased.

                   What I mean by that is that people have realised that actually the kind of workers that do this work are actually valued, professional people. Now if we use that mantra, valued professional people, and then apply it to the salaries that sometimes are paid. Then I think the local authorities and CCGs are very much aware that, as a sector, we have to increase the offering and reward to the workers that we employ.

                   That’s a message that I’ve got in the discussions I’ve had with the multiple local authorities over the last 12 months. To me, it’s quite reassuring and gives some validation to the sector.

00:28:32

PC              Just distilling from what you’re saying, if I’ve understood you correctly, you’re saying the events of the last few years have made support workers be taken… Not to say that they weren’t taken seriously, but that is to say to be taken even more seriously than they were before on their roles.

                   Thus they’re more valued, and being more valued, there becomes more funds or more money directed towards them, paying them, so thus that sounds like a pretty positive place to be in, that we’re getting into then? Is that a summary of what you’ve said?

AP              I think it’s a more positive place, yes. That is a summary of what I’ve said, yes.

                   It’s good to see after quite a few years of seeing maybe that’s not always been the case. I think social care has always been a career that’s been meaningful and a vocation sometimes.

                   With the qualifications that are available to people to take, with the increased value from society and the local authorities then I’m hopeful that the future of social care will be very much a positive place to be. And attract some more highly skilled people that want to be in the sector and work with the people that we work with in a very meaningful way.

00:29:53

                   I would say I have a degree of optimism, but it’s always going to be… It’s a difficult place. I think social care is a place that moves sometimes very slowly. That evolution will probably be over the next two or three or four years rather than next year, if that makes sense, Paul.

PC              I see. In the words of a famous revolutionary, there are decades when nothing happens and weeks when decades happen. I suppose we may wait and see.

                   Thanks very much for speaking to me, Alac. It’s really great to have your own personal reflections and insight from all of your time working in social care.

AP              Okay, thank you very much, Paul. It’s been a pleasure.

PC              Absolutely.

                   And thanks to you, the listener, for tuning in to this episode of Yes to You, the Lifeways social care podcast. We’ll be releasing new episodes all about adult supported and residential living every month. So if you haven’t already, please do subscribe. See you next time.

00:31:00