Transcript – Ep3: Yes to supporting people living with multiple complex needs
Main speaker: Karen Roberts, Lifeways’ Group Head of Health and Clinical Governance
Host: Paul Crompton, Marketing and Communications Manager, Lifeways
PC Paul Crompton
KR Karen Roberts
PC Hello, and welcome to Yes To You, the Lifeways Podcast. Lifeways is the UKs largest team of support professionals who provide support for adults in the community. I’m Paul Crompton, Marketing and Communications Manager and Podcast host here, and I’m talking to Karen Roberts who’s Lifeways’ Head of Health and Clinical Governance. Karen, how are you today?
KR I’m good thank you, Paul. How are you?
PC I’m very well thank you, Karen. In this episode, Karen and I will be talking about how to support people living with multiple complex needs, and plenty of things Karen’s learned that are worth sharing with commissioners, social workers and family members. So, Karen, welcome to the Yes To You Lifeways Podcast. I know this is your first podcast so it’s a real privilege to be doing that with you.
KR It is, thank you for having me.
PC Great, let’s get started. So in the immortal words of Socrates, the beginning of wisdom is the definition of terms. So let’s define your role, Karen, just for the benefit of our listeners. I’ve got here that you’re Lifeways Groups Head of Health and Clinical Governance, a registered learning disabilities nurse, and a queen’s nurse. So to boil that down, how would you describe your job in one sentence?
KR I’m a nurse who provides advice, guides and certain information to our 11,000 colleagues who then help the people that we support live healthy and happy lives.
PC The topic of this podcast is multiple complex needs and how we support people with them. So when we say multiple complex needs and people living with complex needs, what do we mean?
KR Complex needs can mean a number of things. It could be people who display behaviours, but it also means people who’ve got complex health needs. So they could have a learning disability and have a heart condition with it. They could have diabetes, they could have epilepsy. So we support them with a range of needs. So they often have a primary diagnosis which could be learning disabilities, mental health, acquired brain injury and then they have a number of other associated conditions or diseases with that condition.
PC Thanks for explaining. Let’s look back at some history. How long have you been working in social care and nursing, and how has the whole sector changed since you’ve started, and have the changes been positive?
KR I qualified as a learning disabilities nurse in 1996. I worked in residential care and secure services before I moved to Lifeways in 1998. And services have definitely changed since I started in social care, it was very much residential care. Supported living was a newish idea at the time in 1998, and we had what were called individual residential care placements. So people lived in a family home, so a bit like an adult placement.
And as years have changed, obviously people are living longer, they have got more complex health needs, we are supporting people differently. But I think some of the real positives is the facts that services have become more flexible, they’ve changed more. So we not just defined by residential care, and our supported living means some do living in their own home, living with other people, living in a flat scheme.
And the levels of support are maybe 24-hours, they may be somebody who just needs a few hours to support around medication, food, paying bills. So I think the services have definitely changed in terms of flexibility and being able to offer a wider range of services to people with a wider range of needs. So it’s definitely changed for the positive.
PC You mentioned that there’s a lot of people, and you’ve seen more people in recent years that are living with multiple complex needs, and how has that come about? Is there more of an awareness or perhaps a greater clinical diagnosis of multiple needs in people? Was it more that in the old days, so to speak, we saw needs in a more one dimensional or geometric sense?
KR I think that’s absolutely right, and I think health screening has moved on significantly. And also because people are living longer as well, they’re also getting some age related conditions just like you and I would, which people wouldn’t have had before because they wouldn’t have lived into older age to get some of those conditions. So I think it’s a multitude of things that have changed within society as well as people living longer.
PC I guess it might somehow sound negative that, oh there’s more people with multiple support needs these days, but then what I get from what you’re saying is in a sense it’s really a very good sign of progress and sign of better public health all round.
So keeping in mind of course that everyone we support is very different, very, very roughly here, how many people would you say that we support live with multiple complex needs as opposed to just one main need? So, for example, I’ve spoken to individuals who may live with an acquired brain injury alongside say a learning disability and then, let’s say, also a physical disability. Is having multiple needs more common than we think? I’m going to guess it is.
KR I would think a significantly high proportion of the people that we support have more than one need. So they’ll have a primary diagnosis and then they may have other associated conditions. So we have obviously people with mental health conditions that we support who may suffer from depression or anxiety. We have people with learning disabilities who may have a heart condition or may have diabetes, epilepsy.
So I would say an extremely high proportion of the people that we support have more than one needs. They may have one primary diagnosis but then additional needs within that diagnosis.
PC So how does your work tie in then, which is really I suppose the biggest question of the podcast, how does your work tie in then with supporting people with multiple complex needs?
KR It’s making sure that our colleagues have the training that they require to be able to support people effectively with those needs. So they understand the impact that somebodies’ condition, disease has on their life. It’s around ensuring that people are trained to understand when somebodies’ health is deteriorating. So we have policies in place. We have health monitoring forms, we have tools, we have information so that we can get interventions early to avoid emergency hospital admissions, and people are able to stay at home and live healthy lives.
People can live healthy lives with the conditions that they’ve got. But it’s about how do we manage them, and how do we support them, and how do we make sure that they’ve got everything that they need to live that healthy life.
PC Can you think of specific examples with support that you’ve perhaps either provided or led on which made a really significant impact in either the life of an individual, or perhaps multiple individuals?
KR I think some of the things where we have changed as a social care provider is, we used to rely a lot on our community and our district nurse teams, and that, as we know, are very stretched under the NHS. And they used to come in and give insulin to people who have got, not complex diabetes, but they used to come in, do insulin because social care providers wouldn’t administer insulin. It wasn’t something that we did and then they changed it.
So we have what’s called a delegated health care task policy, and as part of that we can take on some of those health needs that were previously undertaken by health colleagues. Whereas originally people had to stay in and wait for the district nurse to come in at whatever time that may be and you would never get, we’ll be in at nine o’clock. It will be, we’ll be in between nine and 11, we’ll be in between 12 and three. Which meant people had to stay in.
It impacts on their quality of life because they couldn’t just say, want to go out all day, the weather’s nice, let’s go to the theme park, let’s go to the park, let’s go out. They weren’t able to do that.
So by us taking that in house, training our staff, ensuring that they were competent to do it, we’ve got all the relevant information in place, that our colleagues know what they need to do if somebody isn’t well and the medical advice that they need to get, etc.
It’s had a massive impact on the quality of people’s lives, because they can get up in the morning, their insulin is administered by our support colleagues and then they can go out and have the day. And if they need insulin at lunch time, they don’t have to come back to their home, they can have it in the theme park, in the restaurant with our colleagues.
And that’s had a massive impact on the quality of the life of the people that we support because we’ve said, we can do these tasks safely, they’re within our registration.
PC That sounds like a really win, win all around because it relieves pressures, I suspect on local health authorities and district nurses. And yet at the same time you hear a lot of talk in our sector about continuity of care, continuity of support. And I guess putting myself in the shoes of someone we support, I would far rather someone I know and see all the time administer insulin to me, as opposed to it could be any number of district nurses coming round that I’ve had to wait for.
KR Absolutely, and that was also some of the issues that we were encountering, particularly where people were very resistant to have new people coming into the house, didn’t like health professionals. We have some people who see somebody in a uniform and it brings back negative... Health professionals, it brings back negative images for them and things. Whereas we don’t have that now. It’s somebody that they know, somebody that they trust, that they see on a very regular basis.
So that also took away some of the incidents that we were having around people perhaps refusing to have their insulin because they didn’t feel comfortable with that nurse. Because of the pressures on the health service, they couldn’t guarantee it was going to be the same nurse or even a little team of nurses that were regulars for them. So absolutely that made such a difference from that aspect as well.
PC Yes, it makes a lot of sense
What do you think are some of the biggest misconceptions around people with multiple complex needs that we support and the biggest misconceptions around the social care sector in general? I think that just about every time that I tell, let’s say a friend or a family member or someone I’ve just met about Lifeways, people often struggle to understand how we support people and how family members are involved with support.
KR I think people see social care as elderly care. That’s definitely a misconception, is that you talk about social care and people think about elderly nursing homes, pop-in visits for elderly people who live on their own, rather than the majority of people that obviously we support.
I think COVID did shine a light on social care and the vital work that it did, and how it needed to be a partnership with NHS rather than them and us around that whole... Because obviously we supported discharges from hospital, we were able to support people at home as much as possible rather than taking up beds within the hospital.
So I think it helped to shine a light on social care, but I think there’s still some misconceptions around, particularly people with learning disabilities that they all live in residential care, they don’t live in their own house, they can’t live independently. They need full time care which as we know, that is not the case at all. Some people will do, and some people may need a residential care, but that doesn’t mean that they’ll always need that. As their needs change, as they become hopefully more independent, they learn more skills.
So we put that support around them and that nurturing, and we work with families who obviously can also be quite anxious as well if somebody’s lived at home and they’ve looked after them, they’ve been their sole carer, to suddenly hand them over to somebody that you don’t really know. We do a lot of work on transition and trying reassuring. But it would be like a parent letting your child go to nursery, to go to school. It’s all those same kind of anxieties.
We do have a lot of work with the families, and then it’s around... But actually people can be more independent, they can move on and therefore they may never be able to live in the house on their own. Some people we support will be able to move on, but some people may go from residential care to a support live in with more people.
Or they may go to a flat scheme, so they live with a number of people who’ve got their own flat within a building, but there’s always support around for them if they need it. So they’ve got that independence but also they’ve got that reassurance that there’s somebody there if they need them.
So I think it’s around showing social care not just for elderly nursing homes. Because even on the media if they talk about social care, they go to an older person’s nursing home. They don’t go to… Very frequently, very infrequently, sorry, do they go to a residential care home for people with learning disabilities, a supported living for somebody with learning disabilities. It tends to focus on nursing homes and elderly care. Social care is obviously far more than that.
PC Yes, and just to clarify to the listener who’s not aware, we have people in Lifeways who move in on their 18th birthday. I’ve talked to several people who have done that. And then we also have people who are generally in the older cohort but generally speaking a lot of the people we support, they’re in their 20s, their 30s, and their 40s, sometimes teens. So you really have a lot of diversity among age ranges and of course also needs.
Independence has a wide scope. On the whole, of course our aim like you said, is to get people back into the community. For other people, independence may mean just to be able to make a cup of tea by themselves in the morning. How do we help figure out or understand these concepts of independence, and support the individual to work towards them?
KR It’s about getting to know the individual. It’s about the support that we provide is person-centred. There isn’t a one size fits all. You don’t just assume that somebody who has down syndrome, everybody who’s got down syndrome can make a cup of tea, they can deal with their own personal care. It’s around knowing that individual and getting to know their skills, their strengths, their abilities, and what their aspirations and goals are. What is it that they want to do?
Because sometimes we think everybody wants to live on their own in a flat. But actually some people don’t, some people are quite happy to live with other people. And for them, their goal may well be that they want to get a job. We support a number of people in employment which is fantastic, and there’s still a long way to go. But some of those barriers are now being broken down because we’ve got some amazing advocates with, particularly down syndrome, who are all on our TVs now showing that actually you can achieve anything.
So we’ve got those kind of aspirations. Whereas for some people, and also I think it’s about acknowledging that because we do support people throughout all of their lives, sometimes people do become independent, but then later on in life they need that support back in again because their conditions deteriorated, they getting older, they not able to do things. Just like you and I, there are some things as we get older we may not be able to do that we can now.
So it’s about not putting everybody under that same umbrella, not defining people by their labels, but understanding that everybody’s got goals and aspirations, and working with the individual in a person-centred way. So what might be a goal for one person may not be for another.
And for some people who’ve got very complex needs, we support some people with some very profound learning disabilities, and actually their goal is about maintaining their health, their quality of life, making sure that they’re happy, they’re comfortable. And that’s a major achievement for that individual, and that’s really, really important.
So for me, I think the key thing is you don’t define people by labels. It’s about understanding that individual, everybody’s an individual, and ensuring that we treat them as such. And that’s the big ethos around person centered care because it’s based on the person and what their aims, their objectives, what they want to do in terms of independence.
PC The mantra that I picked up from your answer would be assume nothing. Is that a fair mantra to have?
KR Absolutely it is. Most definitely because there are lot of the submissions still out there in terms of what people with a learning disability can do. There are sadly some negative connotations about people with mental health because of... You tend to hear the negative stories on the media rather than the really positive stories that we’ve had.
We’ve got fantastic artists, we’ve got people who’ve written books. We’ve got some amazing people who have achieved absolutely amazing things but they’re not necessarily the things that you hear in the wider society. So yes, that’s definitely a good saying.
PC I think one of the things that I’ve also learned in just working for Lifeways is, let people surprise you. Right, people will always surprise you, very often positively, if you let them or if you support them to do that, right?
KR Yes. And I think one of the key things as well is, you talked about families, and it’s working with the families as well because they’re a real important part of people’s support. So it’s around building those relationships with the families, trying to...
Because some of the people that we support, they want to do things that may be a little risky, so it’s positive risk taking. We all do that within our lives, but for some families that’s really difficult to understand because they want to keep them safe, they want to protect them.
So say somebody wants to learn to drive, well no, why would they want to learn to drive? But actually they can learn to drive, that’s what they want to do, they able to do it. They’ve got no medical conditions that stop them from having a driving licence, they can have the lessons. But actually for some families that’s really difficult, it’s that letting go. And it’s about also understanding that and trying to work with people to get them through that.
And so sometimes our colleagues are supporting the people that we support but also the family members as well and making sure that they’re not excluded from people’s lives. But also people are adults and they’ve got the right to make their own choices, just like every other member of the general public have.
PC I like what you said about cars. It’s interesting because I’ve been seeing a lot more stories and just cases and stuff of people buying new cars and going around in them and visiting parents and things like that. And when I’m hearing those stories, I think, wow. I think that is definitely not what the average person on the street, as it were, expects that the people we support are getting up to.
KR Yes, absolutely. And it’s allowing families to be family members, not carers. It’s allowing them to have the same relationship with their children, their loved ones as we have. Because for a number of years families often have had to fight for everything that they’ve got, they’ve been carers and it’s really nice to switch that balance so people we can...
Some of the lovely stories, our people we support who’ve cooked somebody dinner for their mom whose come over, and for all her life she’s been the one who’s doing the cooking, the cleaning and everything. And to actually switch that balance has been so lovely for people, and it’s been really powerful as well.
PC That’s really amazing to hear and to see that happening every day, I think we’re really privileged. You don’t have to look too far in the wider sector to see pressures on the NHS. Do people we support tend to access the NHS more because of maybe longer term complex health needs, or do they need the NHS less because of all the support they receive from us?
KR I think they definitely need it less purely because we do, as the delegated health care task we are, I think they definitely need less emergency care. People still become unwell, and they still need to access the health service, and that will never change.
But I think what has changed is that emergency admissions, that emergency call to the GP, of hours because staff are skilled and trained to see the slight changes in somebody. The slight changes in their symptoms. It might be their temperature, it could just be the way that somebody’s behaving. Presenting anything that’s not quite right. We know that when that happens perhaps their diabetes is starting to become less controlled.
So it enables us to get interventions early so we can do more preventative things within the home rather than leading to emergency admissions because we haven’t been able to pick up the triggers, and those very subtle sometimes symptoms which has led to an emergency NHS admission.
And also we are supporting people to have annual health checks, to undertake the screening programmes just like the general public do. So obviously the cancer and all those kinds of things, we are encouraging people to do that and working with them. Because we are aware of how people sometimes get quite anxious when it comes to hospital appointments, visiting places that they’re unfamiliar with.
So we do a lot of work with breaking down some of those barriers, reasonable adjustments. So if they are having to access the NHS, there may be times where they need a double appointment. But actually there may be times where with a bit of coaching, and supporting, and time and patience, somebody can go and just have an appointment that’s just the standard time because we’ve worked through that process with them.
Whereas I think previously it was always, oh someone’s got a learning disability we better give them a double appointment. Well that’s not always necessary. It is for some people and that’s the right thing to do, but not for everybody. And again it’s about not just labelling somebody and saying everybody needs this.
So in answer to your question, I think because of the support that we do provide we are able to limit some of the NHS contact that people have, particularly on an emergency basis where people have become so unwell.
PC Right, and to do a follow up, really final question on that regarding the wider health sector. You hear a lot a talk about social prescribing, such as for example, doing a yoga class, or riding a bike, which your GP may even refer you to nowadays days in my understanding. But how do we...
Obviously we’re treating that as a really good thing and a great step forward, but how do we reconcile or combine these aims with existing clinical needs? So for example, the individual may have a very real need for medication and more medically intensive approaches, do these clinical and non-clinical needs ever clash?
KR No, I don’t think so and I think the social prescribing is really good. Because we know as a nation, we’ve got a real issue with obesity at the moment and people who are pre-diabetic. And it’s around riding the bike, the exercises, getting more active as a society, and that applies to some of the people that we support as well.
So there is a place for medication and people need to obviously take the medication they’re prescribed. But it also works hand in hand with some of the social prescribing. Because some of the social prescribing stuff is also about mental wellbeing. So being out in the fresh air, meeting other people, doing other things.
Which actually your medication may enable you to do that because without your medication you’re too anxious, you’re not able to go out. But with your medication you are. And you’re able then to join these groups, do these different things. So it does really go hand in hand for that, and there will always be a place for medication.
But there’s obviously been work around not always over medicating people with mental health, with learning disabilities. And so it’s around what medication do people need to be able to live a good quality life, but what other things can we do to help them for them to help themselves, like some of the social prescribing things.
PC Right, so seeing it as complementary rather than in some sort of a fundamental conflict with each other.
PC And I guess I’ve been meaning to ask you, you’ve worked in Lifeways now for 24 years, what is the one biggest lesson that you’ve learnt in that time?
KR I think it’s around, we’ve touched on it earlier as well, never make assumptions, people really do surprise you. And for me, we can’t fix everything, we can’t sort everything but as long as we can go home and say, I’ve tried my best, we’ve had a really good day, and remember the positive stories that we’ve got.
We’ve got some amazing people out there who’ve achieved amazing things with the support of our colleagues who worked tirelessly. And I think it’s around never make assumptions because people really do surprise you if they’ve got the right support, they’re in the right environment. They can achieve wonderful things.
PC It’s great to be reminded that people that we support with multiple needs receive exactly the right amount of support that really promotes their independence. Thanks for speaking to me, Karen, and thank you for being on this podcast.
KR You’re very welcome, thank you.
PC And thanks to you, the listener, for tuning into this episode of Yes To You. We’ll be releasing new episodes all about adult supported and residential living, and the wider social care sector every month. So if you haven’t already, please do subscribe. See you next time.