Podcast Episode: Shared Lives
Category: Adult social care
What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.
LS - Lesley Stevenson
SE - Shona Elvin
AK - Asif Khan
BB - Bill Black
ES - Elaine Stockdale
BH - Ben Hall
LS Today’s discussion on Shared Lives in Scotland, we have with us Shona Elvin who is family placement assessor for Cornerstone, we have Asif Khan, who is a Shared Life service user with Quarriers, we have Bill Black, who is a Shared Lives carer for Cornerstone, Elaine Stockdale who is a Shared Lives carer with Shared Lives Moray, Ben Hall, who is Scotland Development Manager for Shared Lives Plus and I’m Lesley Stevenson, Scotland Development Officer for Shared Lives Plus. Shared Lives is a community-based model of social care, in Shared Lives in adult who need support, moves in with, or regularly visits an approved Shared Lives carer after they’ve been matched for compatibility and together they share family and community life. It’s regulated by the Care Inspectorate under the adult placement regulations. Shared Lives carers are self-employed, they deliver care from their own homes, as part of a package of support. They can offer day support, short breaks and respite, or long-term placements or a combination and they are recruited, trained and approved by local Shared Lives schemes. Ben, can you tell us, how long has Shared Lives been going for in Scotland?
BH Shared Lives is well established, if a little used model of social care in Scotland. The first scheme which I think was set up by Quarriers was first registered 35 years ago and it’s still run in Glasgow now. Across the UK there are about 14,000 people who live or use or receive care within Shared Lives but in Scotland that’s only about 430 so, it is under represented at the moment. Of the 15 schemes that are run in Scotland, there’s about half of them are run by third sector providers and the other half are run by in-house teams within local authorities themselves. Some of those schemes are just bespoke size so, set up to solve specific person’s support needs within an area to the 2 larger schemes which are in Fife and in Moray which support between 100 and 120 people.
LS And who receives support through Shared Lives, what kind of service users are supported?
BH It can be used with all kinds of different client groups, initially the model grew out of the closure of hostels where people with learning disabilities were being supported and people going into the community and some of the people who were supporting them put their hands up and said, “Oh, they can come and live with us.” and then the regulations grew, the adult placement regulations grew from that and so, there is maybe a bout 50% of the people supported are people with learning disabilities but it can be anybody. So, it could be people with physical disabilities, in Moray they work with a lot of older people and people with dementia, people with poor mental or with mental ill health. The really effective part of Shared Lives comes from the fact that it’s based on people’s relationships and it’s relationship based and people who are living or working alongside each other for many years and they often say that they’re part of a family and this positive and secure and flexible way of living allows people’s confidence to grow and people take part in the community in the ways that almost everybody within social care wants people to be able to do and in ways that most people take for granted and I think for me the impact can be really startling with people once they’ve led settled lives with somebody to walk alongside them, then they have the confidence to grow and achieve what they really want to from their lives.
LS Okay, we’ll move on and I’d like to hear about the lived experience of Shared Lives for those people who provide Shared Lives caring support and those who actually live in the Shared Lives arrangements. So, Asif, could you tell us about how you came to Shared Lives?
AK The Shared Life came through Quarrier and they found a family for me to fulfil my needs and was very good, is like I will describe Shared Live is like an umbrella and you live under the umbrella with the family and safe and like you know somebody is basically there for you to support you in day to day life and to show you different skills like to make you more independent if possible they can.
LS So, what kind of things have you been able to do as a result of living in a Shared Lives arrangement that you might not have otherwise been able to do?
AK The skills they taught me like cooking skill, how to cook and like safely, not to try and burn myself, taught me how to cook for example like pasta or I can make curry now as well. The support is still there, she just watch me what I’m doing but I really feel proud of myself to have this skill with making it if tomorrow she’s not there, I’ll live on myself. I have that skill with me, don’t have to wait for anyone to support me though and also, she taught me how to like iron my clothes and to wash my clothes, how to divide the white colour and different colour separate like black. Think it’s really useful the skills and also, she taught me finances, how to manage my finances and has really made me more independent and really confident to go for shopping for example, watch my budget: how much I’m to spend.
LS Great so, it’s a whole lot of life skills that you’ve been able to acquire through that?
AK Absolutely and also like I do public speaking to share my life story, how I lost my sight and things like that and so my carer helped me with that and I’m really grateful to them, you know what I mean, like I’m a really lucky person to have the carer with me and support me with everything that I want to achieve in my life and so every step by step they kind of stand by me, I feel secure, I feel more confidence, I know somebody’s there for me when I need it.
LS And can you tell us about how you came to be matched with your Shared Lives carers?
AK Yeah, before this family I live with now: Khan family, I used to live with a Scottish family in Cambuslang. They were really good, very nice family again with Quarrier was got this family for me as well, but I said to my Quarrier, I need family like same culture, same religion if possible, like I am Muslim so, I was lucky to have Razie (spelt phonetically) used to come to my school to translate for me cos I couldn’t speak English when I came to United Kingdom in 2004 so, it was really difficult for me to communicate with people so, she used to come to my school so, from that time we kind of became friendly and then 2011, I think it was she was wanting to foster me and I was really lucky to be living with them.
LS Bill, can you tell us about your experience as a Shared Lives carer? What does Shared Lives mean to you?
BB It means basically I think people having the opportunity to do the things they want to do. I worked in Social work for 25 years and the last part of that I was with a Shared Lives scheme and I could see the difference between people who lived in residential care where they had staff coming in or out and doing things for them and passing information on and so on and I could just see how a lot of the problems that were around in that model of care, just weren’t a problem when it came to Shared Lives care because you were dealing with one person or a family and the information you needed to pass around was just happened naturally so, you ended up with a situation where you didn’t have the problem of well somebody’s on a shift and they have to stop at this time and change over and if somebody wants to go out for an evening, go to a concert, they’ll have to leave early because the shift finishes at 10 o’clock or something like that and you could just see how many big problems were removed by having a Shared Lives arrangement and decided at that point, my wife had been looking for something she wanted to do and we decided it would be a good idea for us to try and look at Shared Lives. So, we approached Cornerstone and after the various assessments were done and so on we ended up with a lady staying with us, whose now stayed for 12 years and when she first came, she was very kind of uptight and worried and everything was a problem to her and now she’s the complete opposite now, she’ll soon tell you what she wants and how she wants to do it and so on and it’s just happened kind of organically, you know, she’s grown into being a part of the family. She goes on holiday with my daughter, again that’s much more natural cos my daughter’s a similar age to her so, they just go off and have their holiday and do what they want to do and she’s always been someone who doesn’t like the idea of respite, she feels as if she’s being sent away, if she’s got to go to respite. So, what happens is that my daughter and her have a discussion and then go on holiday which is much more natural thing to be doing than going away on respite which is obviously part of the arrangement for Shared Lives schemes and it’s one of those things where obviously people that need a break need to have something in place to allow them to do that and so, I suppose if somebody was thinking about being a Shared Lives carer it wouldn’t be 52 weeks of the year, it would be you know, being a carer and having their time when they can do their own thing.
LS Uh huh.
BB So, it doesn’t sort of completely engulf all your time.
LS Yeah, that’s great thank you and you talked about the benefit that Shared Lives has had for the lady that you support. How about you as a Shared Lives carer, what kind of impact has it had on you personally?
BB I think it’s been really positive, Kim moved in about 2006 and she lived with myself and my wife and then my wife unfortunately passed away in 2012 so, she’s decided she wanted to continue to stay with me so, she’s now been there for 6 years with myself and I think at that time she’s given me something to focus on and to do, that helped me to get over the loss that happened then and she’s contributed as much as probably she’s received, you know, and she’s very able person but she needs a bit of back up and little bit of help with her confidence and so on but that’s certainly grown over the years that she’s been here. I think she’s someone who you could technically look at her and say, “Well she could live on her own, she could cope with the things cos she can probably do the things she needs to do.” But I just don’t think she would be a happy person living on her own, I think she would end up looking for other things to do and maybe some of them wouldn’t be the best things for her so, I think she’s got the best of both worlds. She’s got the support but she’s also got the independence that you know, she can choose what she wants to do and when she wants to do it so, it’s very much a lifestyle that she can decide what does she do, does she decide to go and see her family one day, that’s fine she can do that, there’s no restrictions really on her. I just ask her, “If you’re going somewhere, make sure you phone me and tell me you’ve got there okay and phone me and tell me when you’re coming back.” And she’s happy to do that.
AK Can I say something? When you say like, she’s living with the family, I would agree with you because when we get used to living with the family and then decide to … I know this is a good idea to become more independent and live alone but I think it will be much lonelier and like personally myself when I think about it now, I go opportunity, like I’ve been offered a flat and things like that but when I really think about it actually come to reality, could I live myself or could I imagine thinking myself, no what I mean? It really kind of terrifying like no one being there at night time to talk to someone so, I would agree with you there it’s quite difficult to take that step, I think you have to take that step one day but at the moment I would agree with you, yeah.
BB Yeah, cos there’s a difference between somebody who can live independently and somebody who wants to live independently, I think that’s the difference and people can live independently but they could be quite isolated too when they don’t have the family contact around.
BH I think independent living is also, we set it up as the way we should be but very few people live independently as in, they’re on their own, we’re all reliant on people and very often we define ourselves by our relationships and by those people around us as well as the work we do or the activities that we do in communities and Shared Lives supports those relationships and supports those activities in a very natural way that isn’t structured around people’s timesheets and whose available on this particular day.
LS Great, thank you. Elaine, you’re a carer … a Shared Lives carer with Shared Lives Moray. Could you tell us about how you came to become a Shared Lives carer?
ES I was at the time working for Moray Council in another role and I watched the Shared Lives service grow, I heard lots of positive things, I heard lots of interesting things, it enthused me and eventually I took that step from being in full time employment with the local authority to becoming self-employed with Shared Lives, took a little bit of time and I went from being full time at the council to being part time at the council and part time Shared Lives and eventually made that final step and went full time with Shared Lives. There was quite a lot of paperwork to do initially and there was a house assessment, there was obviously a PVG to go through and all those boxes had to be ticked on all the forms but once that was through, I was accepted as a Shared Lives carer and I had various different individuals come and visit me on various different days throughout the week. So, on a Monday, I have two young men with a learning difficulty come and we do lots of life skills, eventually both of them hope to live independently, both are living with their families at the moment, my role is to perhaps get them out into society a little bit more, out and about doing things that they want to do, socialising, and also some practical life skills so, we do quite a lot of cooking, we do quite a lot of cleaning which is rather nice, yes, it’s quite nice having somebody to help me clean the windows once in a while, we do ironing, we do everything that you know, you would do if you were living independently so, they would bring some of their own stuff from home, and they’ll help me with some of my stuff so, it’s great fun and do you know, they’re lovely lads. We’ve got a great relationship, I hope they can talk to me, I can certainly talk to them, they tell me what they think, and I tell them what I think. They are gaining in independence, they are gaining in confidence and they’re gaining in self-esteem, I see it every week. They’ve been coming to see for over a year now and its just amazing to see how they’ve moved on, then later in the week, I have several gentlemen who experience dementia and that’s a very different day. We go out and about, we go to various different Alzheimer’s Scotland events, there are coffee mornings, there are quizzes, there are lots of sort of exercise orientated events that we go along to, we also spend time in my home so, we look on the internet. We use the internet so, it’s a great resource for finding out about places that they’ve visited in the past, we’ve done quite a lot of work on ancestry, we’ve looked at family trees, it’s amazing what all these things, how all these things spark off memories, spark off conversations, spark off things that they haven’t even thought about for a long time, great fun again and it’s time, I think, the amount of time that I can spend with them allows them time to think, allows them time to put their thoughts together, allows them time to express those thoughts. I have gained a lot from them as well, they’ve got so much wisdom, we pass information back and forth, we pass thoughts back and forth, we talk about everything, they are such special people and then I’ve also got some ladies with mental health issues as well so, I’ve got a great variety of individuals that come to see me, practical crafts, I’ve got a lady that loves sewing, we’ve made some wonderful things and we’ve learned lots of things together.
BH I’m really interested to know, Elaine, from your point of view as a carer, what you feel the impact of the Shared Lives relationship, because you’re providing day support, particularly on people with Dementia because it’s quite rare well people get support within social care with Dementia quite late on in their progression of the disease and I’m interested to know about the lives that they’re leading and if you see changes in them, positive and negative?
ES Positive, for the most part. The 2 gentlemen that I see most regularly, they are able to … because they know me now, have had that opportunity to spend time with them and to spend time with their families as well, to learn a lot about them, I can ask questions and I can show them things that will spark memories and spark their interest, we can go places that I know that they will be interested in and mentally that’s very stimulating for them and it’s amazing what comes out. It’s amazing what I get out of it, it’s amazing what information I can find out. We went to a local castle recently and one of the gentlemen said, “There used to be a statue of a fish up there.” And we went and spoke to the custodian, he shook his head and he was like, “No, there’s never been a fish there.” But this gentleman was absolutely positive so, we went back again later in the year and we spoke to a different custodian and he said, “Oh, yeah there was a fish there. It was removed about 10 years ago.” And that memory was just there in that individuals … and he could articulate that so well. Negatively, yeah, you do see a deterioration over time, physically and mentally but working together, supporting each other we can try and work through those issues and keep the service going for as long as possible.
BH And, are people living at home with family carers when they come to you?
ES They are, yes. They’re living at home, they may come to Shared Lives more than one day so, I have one particular gentleman, I have in 2 days a week but the other gentleman, he’s with me one day a week and with someone else a different day of the week so, that works out quite nicely for both those individuals. They both live with their wives who support them the rest of the time, although they do have some day care involved as well. Being able to … to a certain extent support their wives, their carers as well, you know being there just as a listening ear at the beginning and the end of the day. Being able to offer some support and sort of advice and signposting sometimes is really useful for the family and obviously it’s a little bit of respite for those carers as well, they can go out and do things that they wouldn’t be able to do if their partners were at home with them during the day. You have the time to really appreciate them as individuals and I think that’s what gets lost sometimes, you know, they’re in the system and we forget that they’re people, and having that opportunity to talk, having that opportunity to really get to know somebody is invaluable when it comes to Shared Lives.
BB Yeah, I was going to say that too because it’s the individual relationship you have with people and a lot of services can’t provide that simply because of numbers, they have people coming along, there’s maybe thirty people come along and four members of staff, there’s no way they can form the same kind of one to one relationship that you can when you’re just working directly with someone. Get to know all the wee ins and outs of things and what they prefer and what they don’t like and they also pick that up from you, what you like and what you don’t like, you know so it is that one to one relationship that I think is the key to the people get to know you and trust begins to build up and you can begin to do things that maybe wouldn’t have been possible or are definitely not possible when they’re not in a trusting relationship like that.
ES Very true and you do pick up on those signs as well, when somebody’s perhaps unwell or perhaps when somebody is deteriorating slightly, and you can flag that up.
BB Yeah, you just know that person, there’s something different or they’re quieter or something’s changed, yeah.
LS Shona, you work for a Shared Life scheme, could you tell us something about the service that you offer and the impact that it has on the people who use it?
SE Certainly, yeah. We offer Shared Lives service through full time carers, we also have short breaks which the full-time carer would provide for some of the other carers within our service. So, we do tend to keep things inhouse, it works really well because each of the carers know each other but they also get to know the people that they all have. So, we’re able to offer very much, a wraparound service to the people who are placed with us. With regards to the impact of the service for the people that use the service, I’m only going to reiterate what everyone else has said, the confidence in the people that we support grows immensely it’s amazing to watch. We have people placed with us who are very shy, quiet, retiring and they just blossom into out-going individuals who know their own mind and know what they want to do and it’s just absolutely fantastic to watch. We’re able to encourage them to develop skills so, to help them to develop skills whether it’s daily living within the home or out with the home, finding work or volunteering, going to college, it’s just it’s superb in that they’re able to express what they want to do and taking that expression we then transfer it to practicalities, this is what you think you would like to do or want to do, we’ll work towards that with you. It’s about building networks and being able to build networks within the family that they’re placed in but also within the local community where they live, tapping into the resources in the local community, getting to know people, getting to know they’re way about in the local community. I think the biggest impact is having family support, all of the people that we have on placement, they do understand that the families that they’re living with are not their natural families, they’re not their birth families however they are their family in all sense of the word. They offer them safety and security and love, I think it’s a word that we don’t like to use in social care, it’s been taboo for many, many years however I think people do grow to love and care for each other within that family setting and it’s such a natural outcome and it’s got a huge impact on the lives of the people that we support and care for. Happiness is something that we are not able to measure however I think you only need to speak to the people that we support through our service, through Shared Lives, and the happiness factor is evident. Not just for the people we support but for the carers too, you know, if people weren’t happy, it wouldn’t work. Every person is very different and the similarities in their achievements are tangible, you can see how people have grown and developed within the service but the impact on their lives is absolutely amazing, its so difficult to explain sometimes unless you actually see it for yourself but having supported people who have come from possibly long term care or from hospital closures as was mentioned earlier, moving them into a family that they can grow with and call their own, it’s just it’s immense, it’s something that they’ve never had before and giving this opportunity is probably the biggest opportunity that they’ll ever have in their life-time, in that sense. Shared Lives is and has been life changing for all of the people, I think, within Scotland who use a Shared Lives service and we would love to promote it because it’s such a natural form of support for people, much more so than other forms of social care, you know, where people are living within their own house and maybe having a staff team coming in, there’s no continuity, staff go off sick, carers don’t do sick, carers plough on no matter what happens, and I think it’s just the continuity is there, the caring is there and the want is there all the time. I take my hat off to my carers, I really do because I don’t think it’s something that everybody can do. It takes a really special type of person to be able to be a carer.
BB You were saying it was life changing for the people but also, its life changing for the carers as well.
SE Oh absolutely.
BB Who do that kind of …
SE I do agree.
BB … well I always can’t say do that job, cos it doesn’t feel like a job, it feels like just part of your everyday existence, you know?
SE Uh huh.
BB And that’s one of the great things about it, it just becomes so natural and so part of what you do that you wouldn’t give it a second thought and, I mean, I don’t like to … it maybe feels like I’m running down staff in residential care and so on but you can’t as a staff member give the same kind of input as you can as an individual who’s with somebody 24/7, it’s just not, it can’t be done, people do their very best to do it but it’s always got, I feel there’s a point where it becomes these are staff and these are the people they look after whereas that’s not a kind of what you think about it when it comes to family placements.
SE You care about as well as care for.
BB Yes, uh huh. I mean I’m sure there’s many staff members who are very caring people but they’re in a position where the kind of structure of the service they’re providing just doesn’t allow them to go that step further in terms of getting to know people and feeling at the end of the day responsible for them to make sure that you’ve done everything you can to make sure that that person can do the things they want to do.
LS We’ve talked a lot about the benefits and the impact that Shared Lives has on individuals, surely it can’t be without its challenges, is there anything you would pinpoint in terms of challenges?
BB I suppose, I mean the kind of assessment, the matching process should help you to get to the point where when someone’s coming to stay with you, the kind of obvious things that could be problems, have been dealt with or the person won’t be coming because they’re not a match for you but I know with the lady that stays with us that the big challenge to start with was we were probably over protective of her. We thought she needed to be doing this or telling us that or whatever and she had a different idea in her head about what she should be doing and it took us a bit of time to adjust to that and I actually realised that well okay, it’s your choice to do what you want to do and just keep us informed so we know that you’re safe and everything’s alright and she was a bit unhappy with that to start with but then she began to realise that we were doing that because we were concerned about her and we wanted to know she was okay and if there was a problem she could pick up a phone and speak to us so, there was an adjustment in there and also I think between my wife and the lady who stays with us, there’s always this thing about two women living under the same roof and different ideas about how things should be done and you have to kind of accommodate that in some way. Same as we do, your own family, I mean your son or your daughter is going to have ideas about how they want to do things and you might not agree with it but it’s their life and their choice, you know.
ES With the day service, the matching process again is very important and have to make sure that the individuals that are coming to stay with you, not only get on with you, you can get on with them, there’s quite often two individual service users coming to stay at the same time so, they have to be able to get on together. Sometimes it just takes a little bit of time, you know, you have to get to know each other but sometimes two individuals just don’t get on and you maybe have to think about ending that service and finding a better match.
SE I was going to say, I think for ourselves as a provider and as an assessor the challenges for us are getting ourselves known, Shared Lives as a whole, actually getting out there. We’re almost like a silent partner within the care sector. People don’t really know who we are so, that in itself is a huge challenge, trying to get carers on board who are interested and would like to become carers. Actually finding them is a huge challenge, we tend to find that word of mouth works really well and that it’s an on-going thing all the time, we’re always looking for carers and trying to get Shared Lives known so, I think for ourselves that’s probably one of the main challenges, with regards to carers and the people that they care for, the carers deal with the majority of the challenges and they deal with them directly. Contacting ourselves obviously if there’s input required from other places, other people whether it’s psychology or social work or anywhere like that but none of the challenges are insurmountable and the other thing that I was going to say was that with regards to the matching process it’s down to that being done properly that guarantees the success of the placement. If it doesn’t work for one, it won’t work at all and it’s called Shared Lives not Take Over my Life so, you know it’s all about ensuring that that is totally looked after and the challenges when they happen are fairly simply dealt with. Sometimes they can be huge however there’s always a reason for an issue so, that means there’s always you know, you can solve the issue.
LS Right, we’ve talked about the impact that Shared Lives has on individuals, I’m wondering about its wider societal impact. The Scottish Government’s Health and Social Care Delivery Plan states that “Our aim is a Scotland with high quality services that have a focus on prevention, early intervention, and supported self-management.” How do you think Shared Lives contributes to the Scottish Governments wider policy agenda?
BH I think it fits in really well with that wider policy agenda, I would also add in that we simply at the Scottish Government, added kindness as one of their core values and I think that’s something … Shona talked about love earlier, and I think that kindness is something that sits very comfortably within Shared Lives but in terms of sort of different specific policy agendas, we know that people lead better lives and when they’re health issues are dealt with earlier and having somebody to help you navigate the health system means that people will make better use of and can address problems that they have. And so, we have extreme examples where we see people who use emergency health services in a very chaotic way and with a Shared Lives carer and with a Shared Lives arrangement, they become much more structured in their use and leading to much better outcomes in terms of their own health but also a reduced amount on what are overstretched emergency services but more typically people with a Shared Lives carer are more likely to take up medical appointments and they’re more likely to look after their own health through diet and exercise and there’s a whole range of evidence particularly with people with learning disabilities that they don’t have as good health outcomes and they don’t have as good an experience of the health services in general and when you have somebody as I say, alongside you, you can make use of them. But in terms of personalisation, I think one of the joys of Shared Lives is it is a personalised service at its very core and it’s not a service where personalisation has been something that’s been crowbarred on because that’s the way we’ve decided to run our services. Elaine, I think spoke about being able to see the changes in people’s appetite and what that might indicate and picking up on those small indicators. For me that is what sits at the heart of a personalised service, one which allows choice but also you can pick up on those nuances of people’s lives.
LS I’m wondering as well about social isolation, and loneliness, this is something that Scottish Government’s recently consulted on, do you see Shared Lives as having a role in tackling social isolation and loneliness?
BB I think that’s in a way, almost what it’s all about, isn’t it? Is involving people, including people and not letting them sit somewhere and be looked after but they actually haven’t any input and any kind of real opportunity to do the things they want to do. It’s giving them that, opening that door to them and saying, “Okay, come in and you decide what you want to do.” and I don’t think, I can’t think of anybody who would be in a Shared Lives placement who would be lonely, they’ll probably be saying to you, “Go away and give me some peace. I don’t want to do anything today thank you.”
SE I think the beauty of Shared Lives is that loneliness doesn’t happen within Shared Lives because we’re including the person not just directly with the carer but with the wider family also with the family’s social network so, social isolation really doesn’t happen and nor does loneliness because as Bill rightly said, quite often you’ll find that people will say to you, “God, I just want 10 minutes on my own.” Because it is, its loud, it’s noisy, however if they want to be involved in it, they can, if they don’t you know, they can take their time out, so their own thing or you know, go and have quiet 10 minutes in their bed room just to get their head together but the social isolation part doesn’t happen because it’s about building those networks and it starts from the carer and the carer’s family, the carer’s friends, the carer’s local community and that person’s totally encompassed in all of that. What I will add is that they’re not forced into it, we generally find that it comes very naturally and they want to be included, they want to do what the carers family are doing so, I mean they’re involved in family celebrations, outings, holidays, you know absolutely everything that you would do as a family, the person would go along with you so, immediately they have this wonderful circle of friends and family that they can call their own.
AK Thing is it makes you more part of a family when you want to get into all, like you said, going on holiday together you know what I mean like, you don’t feel out of the family, this is my parent and like myself, I call my foster family, my mum and dad, you know what I mean and the rest of the family, the kids and just I don’t … when I go out anywhere and come back to Glasgow and go home, I just feel like so relaxed, I know this is my home and I know who to talk to and things like that so, its like part of the family, you don’t feel like left out from the family.
ES And from a day service side of things, you go into the service users home, you’re collecting them, you’re bringing them out so that they’re leaving the home, if they’re living alone then you’re taking them into a social situation, you’re going to different places where they’re perhaps trying activities that they’ve never done before, they’re meeting people perhaps that they’ve never met before and they’re getting a new circle of friends. I have a couple of ladies that come and visit me who are close friends now and actually visit each other outside the Shared Lives.
LS The issue of quality of care is a key concern for potential service users and their families, how can they be assured of quality and safety in Shared Lives arrangements?
SE Obviously we have applications from carers who would like to become a Shared lives carer and from the first contact that the carer makes us with to the end of the process takes roughly about six months, we would ask the carer to fill in an application form and we would carry out various checks through social work, through Disclosure Scotland, we would ask them to go for a full medical, we would take up references, not only do we ask for written references but I also visit the referees and interview them and that’s as a means of verifying who the person is and what they’re saying in the reference. We would meet with the carer on a regular basis throughout the process, probably on a fortnightly basis for a few hours at a time basically to get to know the carer to know about their lives, what makes them tick but looking at their values, looking at their experiences, life experience goes a lot towards being a Shared Lives carer, you know, if they have had a family, you know they’ve brought children up, that’s all valuable experience that can be used whenever they become a Shared Lives carer. Throughout the application of the assessment process, we’re working towards completing it and going to panel, the panel process consists of independent individuals who come from social work or education or social care and they are panel members and they would look at the assessment once it’s completed and approve the person to be a full time carer or a short breaks carer you know if that’s what they were wanting to do. From that once the carer has been approved, we would then be looking to match the carer with a person, the matching process takes as long as it takes, there is no hard and fast rule that says, “It will take 6 weeks.” If the matching process takes six months, then it takes six months. It’s about getting to know both parties, we want the carer and the prospective person who’s going to be living with the family to be happy with that match. If it doesn’t work for one, it won’t work at all, there’s absolutely no point in trying to make it work, it’s a very natural process where people get to know each other, develop an affinity, become familiar with each other and it happens very naturally, people will go for dinner, they’ll go maybe for an overnight or a weekend and at some point, one of them will say to you, “I don’t think we need to have any more of this, I think the person could move in.” and generally round about the same time, the person who’s being matched will say to you, “I don’t want to go back, I want to stay.” So, at that point, you know that you’ve got it right. But as I say it can take as long as it takes, we have one gentleman in a placement who has been there for 17 years and his matching process took a year, it took 12 months. He was actually in residential setting at the time of the process starting, and we took it very much at his pace whereby he would go and have a coffee, or he would meet them for lunch out with his setting, and he was slowly introduced to the family and he’s now lived with them successfully for 17 years.
BH I think also what the processes that Shona describes leads to is that people are in control of their own care and when people are in control of their own care that leads to safety. The sort of the bigger picture, away, sort of nationally, of the 15 schemes in Scotland, 100% of them are rated as good or very good or outstanding by the Care Inspectorate in relation to care and support and 75% of them are rated as very good or outstanding and that’s significantly better than other forms of residential care. And in terms of formal complaints to the regulator, on the last five year period that the statistics were available for, there was one formal complaint across all Shared Lives schemes in Scotland and as a comparison, there were 900 complaints for old people in residential care, people with learning disability and people with mental ill health, just as a comparator and it’s because, I believe it’s because of the care that goes into the assessment and the matching process and also that people feel in control of their care and they can make the changes before things get out of hand.
BB And you also have ongoing support from the organisation so that you know if you do have a situation that comes up and you’re not sure how to handle it, you can pick up the phone and you’ve got somebody who knows you and who knows the person and you can have a chat with them about where do we go from here, you know and you’ll come up with some kind of solution.
LS The demographic and financial challenges facing the care sector in Scotland are significant and the cost of social care is a major concern for potential service users and their families. Ben, can you tell us about the cost of the service and how it compares to other motivational forms of social care?
BH There are significant savings to be made to the public purse by using Shared Lives as an alternative to residential care. The organisation of social finance carried out some research across four local authorities and the figure that they came up with was that when you are supporting somebody with learning disabilities in a live-in arrangement, you were saving £26,000 per person per year when they live in Shared Lives. Supporting somebody with mental ill heath, organisations were saving £8,000 per person per year and if you do the maths on that, you can see very quickly you can scale up significant savings and allow yourself or local authorities are able to deliver care and support to more people. There are comparative savings when you look at the provision for short breaks or respite care, and the cost of providing day care is slightly lower in Scotland when compared to traditional forms of day care but broadly that’s cost neutral. Last year, we calculated the savings for the public through the use of Shared Lives was just slightly more than £3.5 million and that’s just from the small group of people being supported through Shared Lives. If more local authorities established or scaled up their usage you could see that the savings will be made would be significant.
LS You mentioned scaling up there, obviously at the moment Shared Lives represents a relatively small part of the social care sector in Scotland, to what extent is it sustainable and to what extent does it have the potential to grow further?
BH I think that any service that delivers as high quality outcomes as Shared Lives can be defined as sustainable in a human sense, when you add in then that there are significant cost saving when compared to existing forms of provision, I think that there’s no doubt that it’s sustainable, and that we’ve had services that have ran for more than thirty-five .. well for thirty-five years in Scotland. It’s very clear that this is an established form of care that’s well regulated and high quality that deliver savings. In the past 2 years since I was in post, we’ve seen an increase in the number of people being supported by Shared Lives of 14% each year so, that we’re now at about four hundred and thirty people in Scotland. If we do a quick back of the envelope calculation and look at the largest Shared Lives schemes in Scotland which is Moray where they support one hundred and twenty people, if every other health and social care partnership ran a scheme that was comparative in size to the per head of population then more the four and a half thousand people in Scotland would be being supported through Shared Lives and the savings that that would deliver would be comparative as well. If we’re talking about growth, we need to think of us in two ways, first of all think about how existing schemes can grow where schemes exist already, they often have strategic support within the local authority but support for schemes to increase their rate of recruitment of Shared Lives carers is important and also allowing schemes to develop the skills to support different client groups so, if they’re supporting people with learning disabilities, they might move into working with older people but they might want to bring in a new member of staff with some Dementia specialism for instance. The other area of growth we need to think about is the areas of Scotland that don’t have a Shared Lives scheme, there are 15 schemes already, I’d like to see first of all a scheme in every local authority area, but then I’d also like to see the option of anybody who receives health and social care to have the choice of receiving that within a Shared Lives arrangement if that’s what they choose. So Shared Lives plus we provide support to existing schemes by providing policies and procedure and quality frameworks as well as the peer networks that people use to support the work, they do but we also provide the strategic support to commissioners who may be considering establishing a new scheme.
BB Shared Lives, Shared Lives, everybody needs Shared Lives.
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