Geraldine Cooney, NHS Programme Regional Officer for Shared Lives Plus, writes a guest blog about her work with NHS England.
Six Shared Lives carers supporting people with health needs, recently talked to Lindsay, Shared Lives Officer and I about their experience in Portsmouth. They were full of insights and advice on all aspects of how Shared Lives supports people with health needs, raising some questions and issues that we will have to address, as well as coming up with ideas to help make the project a success.
Throughout our conversations I was struck by the Shared Lives carers matter-of-fact commitment to the health of the people they supported. They tackled health problems and issues as they arose - as they would with any family member – and saw health related tasks as part and parcel of their role. Their belief in Shared Lives as intrinsically health and life enhancing came through loud and clear. They were in no doubt about the value of what they do, and the rewards they could see in front of them seemed to counteract the demanding nature of their role.
These Portsmouth Shared Lives carers people were providing a home for people with substantial and complex issues from epilepsy and diabetes to people living with mental ill health, self-harm and incontinence. They had initiated reviews of medication, become adept at administering injections and developed ongoing relationships with health professionals. As issues developed and chang
ed over time they said they ‘just got on with it’, gaining skills and expertise as they went along, together with the person they lived with. Being at home is ideal for re-gaining skills and confidence, especially after a hospital stay, but they stressed that the person should feel ready and be safe for discharge. They warned that although most health professionals did not understand their role – they thought one couple were running a care home – once staff were aware of the support they gave this could be exploited. One Shared Lives carer described how the person she supports is regularly discharged too early after episodes of mental ill health, simply because of the high level of support hospital staff know she and her husband will provide. For Lindsay and I, this highlighted how important it is to raise health professionals’ awareness of Shared Lives to improve communication, respect and joint working.
But perhaps I shouldn’t have been surprised that Shared Lives carers were not fazed by the idea of supporting people with even greater health needs, when they are already doing such a wide-reaching job and have been doing so for many years. They all agreed that a Shared Lives carer should be ready for anything. We were given advice on recruiting Shared Lives carers, with the warning that if they had seen a job description in advance outlining the demands of their role, it might have put them off! For them, it was clearly all about the person, the connection felt and relationships made, rather than the tasks performed. They stressed the importance of keeping the Shared Lives model, maintaining the matching process and getting full information about each person’s background (not just medical history) before the arrangement started. They raised other important issues for the project such as house adaptations, accessibility issues and slow referrals that might cause Shared Lives carers to lose patience whilst waiting for matches.
The issue of pay came up; they felt the extra demands of their role should be reflected in their payment. For example, if somebody had complex health needs requiring them to stay at home during the day, or perhaps to be waking up at night, this should be recognised. But adequate respite for holidays and breaks was more important to them than pay – they said the basic four weeks of holiday should be increased for more demanding arrangements. Importantly, these Shared Lives carers stressed how important it was to them that the person in the arrangement was happy with the respite care provided. Several Shared Lives carers told us that they found it hard to explain to people why they had to move out of their home, and go somewhere not of their choosing for respite provision. They said that this was a worry and a problem that affected their own enjoyment of their break, and didn’t fit the family model, where you would naturally arrange your own cover for people who lived with you when you went on holiday. They said having a back up carer involved from the start of an arrangement would help everybody relax and enjoy their breaks.
These Shared Lives carers were great advocates for the people they lived with – and they understood their perspective might be different to their own. They could see that once people had found a safe, comfortable, happy home life in Shared Lives it might be difficult to give it up after health funding ended. ‘Who would want to leave?…it’s a no brainer.’ The conversation returned many times to the fact that it was the person’s home as well as their own, and that it was important that they all had choice and control over what happens within the arrangement, including when it ends.
I enjoyed meeting and learning from these Portsmouth Shared Lives carers. What struck me was that practical issues took second place to their overall concern for well-being of their Shared Lives family. One Shared Lives carer who had space for someone and was interested in working in health, talked of the possible impact on her existing family dynamic if she was matched with somebody with higher needs. She was considering the feelings of her existing match who might be jealous of her giving more time and attention to a newcomer. This sensitivity and consideration would be expected in the context of an ‘ordinary family’, and it reminded me once again of what makes Shared Lives and Shared Lives Shared Lives carers so unique and valuable.
2017 started well for me - a new job with Shared Lives Plus – as Regional Officer for the NHS England funded programme. With the overstretched NHS in the news almost every day, it seemed an ideal time to be part of a project, exploring alternatives to traditional hospital and/or residential care for people with health needs. The idea that health and happiness are interlinked may be radical for the NHS, but for most of us it is obvious that a good home and living situation will improve your health and well-being.
In January, I met with colleagues from Shared Lives Plus, along with Shared Lives carers and ambassadors at our Awayday in Liverpool. I was struck by the positive energy, skills and commitment in the room. I went away wondering why the Shared Lives model is so little known about, when it can offer so much to Shared Lives carers, families, people in Shared Lives and health and social care providers, as well as to the wider communities in which we all live.
Since then, I’ve been finding how hard everybody involved in Shared Lives works to be able to offer and nurture these unique arrangements. I’ve started to understand the resources and skills we have in Shared Lives scheme staff, Shared Lives carers and the people who use Shared Lives. The Shared Lives Plus report A Shared Life is a Healthy Life illustrates the many health benefits of living in a Shared Lives arrangement, and shows how many Shared Lives carers already support people’s health needs day to day, as they would a family member. The knowledge and expertise that Shared Lives carers have built up in this way, is a resource that we will need to draw upon to develop the work of the NHS programme. For example, one Shared Lives carer in North Somerset produced her own list of do’s and dont’s based on her experiences of people with dementia. We hope to involve experienced and proactive carers like this in peer training where good practice is shared.
Recognising and valuing the contribution of our experts by experience, and ensuring that this project is co-created by people with understanding and knowledge from the ‘bottom up’ will be important to ensure the success of our NHS programme. This is not just about doing something new, but involves doing more of what we do already, and shining a spotlight on what Shared Lives arrangements are capable of in terms of peoples’ health. Shared Lives recognises the strengths of people and communities and I think it embodies the Asset Based Community Development (ABCD) approach. ABCD sees individuals and citizens as producers of health and wellbeing within the community, rather than as recipients of services. This is a different approach to traditional health and social care services because it asks the question ‘what makes us healthy?’ rather than ‘what makes us ill?’
Shared Lives Plus has received funding for this project from NHS England, and we are currently working with five Clinical Commissioning Groups (CCGs) as part of the match funded programme (there are more to come). The hard reality is that NHS England and the CCGs will want to see savings to the NHS budget arising from their investment in Shared Lives; and we have appointed our evaluators (the New Economics Foundation) to help us with this. I’ve been discovering more about the inside workings of the NHS from attending CCG meetings, learning about integrated care services, commissioning, health budgets, referral and care pathways. I’ve been finding that the NHS is awash with jargon –abbreviations bounce around in these meetings until your head is spinning. To calm my nerves I have produced a short jargon buster for people in Shared Lives new to the NHS. I referred to a very helpful and much longer jargon buster produced by Think Local Act Personal . See link(https://www.thinklocalactpersonal.org.uk/Browse/Informationandadvice/CareandSupportJargonBuster/)
Definitions and language are important, but I’ve also been discovering that the right words are not always followed by the right actions. The NHS seems committed at policy level to person centred care and support building on peoples assets, but the reality is that health and social care services and funding streams are not as flexible and integrated as they might appear and the focus remains on services to fix problems. We all need to be careful of assuming that real change will follow good intentions. This is why we need the input of the people on the ground who can tell us what they know and what they need and how and if change is being delivered and experienced.
I look forward to meeting more Shared Lives scheme workers, Shared Lives carers and people who use Shared Lives in the coming months, as we steer our way together through uncharted waters in this exciting project.
Geraldine (Gerry) Cooney
This blog was written by Geraldine Cooney, NHS Programme Regional Officer, for Shared Lives Plus.
This “Scaling up Shared Lives in Health” blog will focus on Bolton, where the Bolton CCG, in conjunction with GMW and Bolton Council, have been successful in receiving NHS England funding to develop Shared Lives in the area.
The new funding will enable the Shared Lives scheme, which is run by Bolton Cares (Bolton Council’s local authority trading company), to offer more arrangements for vulnerable adults to stay with trained Shared Lives carers in family homes, as an alternative to being admitted to hospital or before they return to their own home after a hospital stay.
Shared Lives is already a popular option for older people in Bolton, but this funding will mean the scheme can expand, to offer more support to people with mental health needs and offer an alternative option for people following a stay in hospital, before they return home to their own homes.
Some people have had to move outside of Bolton to receive the support they need in specialist mental health settings, but this programme will work to bring people back into Bolton, but within the support of a family home to ensure they remain safe and well within their communities.
Bolton have run a well-established Shared Lives scheme for over 30 years, and on 31st July 2016, Bolton Care and Support Ltd began trading as Bolton Cares, to continue providing a range of care and support for adults in the community, of which the Shared Lives scheme is one of the options.
The project will provide employment for 1 new co-ordinator at Bolton Cares in the first year, as well as self-employment opportunities for many more Shared Lives carers. The closing date for the co-ordinator post is 28th February, for details please see: http://www.boltoncares.org.uk/work-with-us/
Chief Executive of Bolton Cares, John Livesey, said: “Shared Lives a wonderful service that really works for the benefit of both service users and carers. The people who use our service become part of a loving family and our carers are experienced in what they do and get so much fulfilment from helping others.
“Since forming Bolton Cares as a not-for-profit company, this is the first major funding boost for us and shows commitment from our partners to developing and improving local adult social care services. We’re delighted with the outcome and looking forward to recruiting more carers and meeting new service users.”
Dr Wirin Bhatiani, Chair of NHS Bolton Clinical Commissioning Group, said: “Over the past few months NHS Bolton Clinical Commissioning Group has been working in partnership with Shared Lives, Bolton Council and Greater Manchester Mental Health Services (GMMHS) on a bid to access match funding for a three year project with Shared Lives Plus and NHS England.
“I am delighted that Bolton has been awarded this funding as one of only five CCG areas across England and Wales. The bid concentrated on improving access to Shared Lives and as a result more positive outcomes for people with mental health needs and/or learning disabilities.”
Karen Wolstenholme, Registered Manager of Shared Lives in Bolton is “delighted with the success of being able to grow and expand services in this area and looks forward to successful “matching” which will enable people to live to their lives to their full potential in the community of their choice.”
As might be expected, 2017 so far has already been busy for the Scaling up Shared Lives in Healthcare team – we’ve been meeting with those involved with the matched funded projects, looking at opportunities for expansion, and we’ve also welcomed colleagues who can help us drive forward development in some of our key locations. Members of the team have also been spending time on the frontline of the NHS to experience at first hand the context in which we are working.
We’ll have more detail about all of the above developments in future blogs – but in addition to this, we have also started the process of finding a partner to help us evaluate the success of the project.
This work is important – as the findings will provide the basis for the evidence used to encourage the NHS to invest in Shared Lives at a local level.
At Shared Lives Plus we know that Shared Lives works. It delivers good outcomes, and independent reports tell us that it offers significant savings. We believe this because the people who use the service tell us – you can read about James and Andy’s story here and see how it worked for Jackie, Jason and others here.
As Shared Lives develops within an NHS context, building on its traditional foundations as a social care commissioned service, we need to be able to clearly illustrate, quantify and evidence how the model improves people’s lives and specifically delivers better health outcomes. We are confident this can be done – our Shared Lives is a Healthy Life report contains numerous stories of how Shared Lives resulted in better health outcomes; and in October, at the launch of the project, Shared Lives carer Andrea told us how the health of J had transformed because of Shared Lives.
This piece of work can build on these stories and capture robust data that we hope will show the benefits and savings of Shared Lives beyond those that we already know about. We expect it will illustrate clear benefits and value to not only social care, but the NHS too. As Shared Lives awareness continues to grow amongst social care professionals, this approach can form the basis of raising awareness and confidence amongst clinicians and healthcare professionals that Shared Lives can be of benefit to their patient populations, and importantly of value to health service budgets also.
If you, or your organisation, are interested in helping Shared Lives Plus evaluate the impact of Shared Lives in the NHS then you can download the information here.
As with any independent piece of research we won’t know, nor should we know, what the final outcome will be. We are however confident that along the way, whoever we work with on this will meet some amazing people, hear some incredible stories, and potentially play a small, but important role in changing how health and social care is offered and delivered to those who could benefit.
This week Fiona and I joined Sarah Storer and the team from the Derby City Shared Lives scheme at their local launch for the Scaling Up Shared Lives in Health Programme. Sarah and the team had organised for people from the local community, the council, health professionals, the local hospital and other third sector organisations to join them and learn more about what their plans are for the next 3 years.
We heard from a Shared Lives carer about a 6 month matching process with a lady who has now lived with her for a year, and we heard how their relationship had blossomed from the first day when they met on a hospital ward. If a Shared Lives match had not been made, the lady would have gone to live in residential care from a really young age, but having a team of Shared Lives families who now support her within their own, she lives a full and happy life in the community.
As we are focusing 10 weeks of our blog on each of the areas who are receiving match funding through the Scaling Up Shared Lives in Health Programme, we thought it was a good time to focus on Derby City and the Southern Derbyshire CCG.
Derby City Shared Lives scheme are a well-established scheme and will be receiving match funding through the programme to develop and expend their current Shared Lives service and plan to support an additional 40 people through from the specified target groups across the next 3 years:
They will not only be looking for Shared Lives carers who live in Southern Derbyshire who could support people with long-term, live in Shared Lives but are also going to be looking for Shared Lives carers who want to offer short breaks and day support. Having a range of Shared Lives choices for people will enable people to not only chose Shared Lives, but be supported entirely in the community wherever possible.
Shared Lives Derby are no stranger to development work; for the last 12 months they have been developing Shared Lives specifically to extend their offer for people with mental ill health so that people can live and receive support in a family setting. Through this project they set up new referral pathways, set up new Shared Lives arrangements and made sure that a lot more people know about Shared Lives. This project has been a great success and has increased the number of referrals into the scheme, so much so that they are now receiving more referrals for people with dementia and those at risk of admission to hospital/residential care admission than they are able to support. The new match funding from NHS England and the Southern Derbyshire CCG will enable the scheme to continue to grow so that matches for these referrals can be found and more people can be supported in the community.
The Scaling Up Shared Lives in Healthcare programme is one part of wider plans for Derby City. Health and social care professionals in the city are working together pro-actively to ‘Break the Cycle’ of inappropriate and ineffective support, and Shared Lives has been identified as a key part to ‘breaking this cycle’. This includes:
Preventing, reducing and delaying the need for formal social care in the community
Reducing dependence on long term formal care services following hospital discharge and to prevent avoidable admissions
Reducing the legacy costs of intensive support provided at home
The Step-up/ Step-down & DCC Social Work team at Royal Derby Hospitals will be trained to use Shared Lives as a route for medically fit people who need interim support to leave hospital. Social workers and Shared Lives workers will jointly assess people for Shared Lives support.
The programme will also support Shared Lives carers to develop ‘dementia friendly’ and accessible homes through adaptations, purchase and provision / installations of aids / equipment.
At the local launch event, Derby City Shared Lives manager Sarah Storer said, “Shared Lives is for absolutely everyone. If someone is eligible for a package of care, then Shared Lives must be included in the options that are considered. In three years we hope that people talk as much about Shared Lives as they do about residential care and that many more people are supported to stay living well in their communities.
Over the next ten weeks we will be focusing our “Scaling up Shared Lives in Health” blog on the five areas that have been announced to receive NHS England funding to develop Shared Lives in Health. The first area to feature is the South Tees Clinical Commissioning Group (CCG) who is investing in the Avalon Shared Lives scheme. We caught up with Mark Burdon and Rachel Lucas from South Tees CCG and Martyn Miller from Avalon and they had this to say about the Programme:
“We are investing in the project because we want to move from traditional services and packages of care to offering local people more personalised option and choice. Shared Lives Plus’s State of the Sector report shows that the North East has a disproportionately low uptake of Shared Lives schemes; by investing in our local Shared Lives scheme, this will help redress the regional inequality in access to this kind of community based provision that has arisen in the area over time.
As part of a ‘fast track’ area for Transforming Care, we have many people with learning disabilities and /or autism in hospital beds who need to be discharged into the community. Shared lives represents an option for these people to be supported in family homes. Our project in the South Tees area will focus particularly on ensuring that Shared Lives support is considered for:
People with learning disabilities and/or autism who are living with their families but where their family needs additional support and who are funded by Continuing Health Care (CHC)
People transitioning from children and young people’s provision into adult services e.g. foster care, who would prefer to remain in a family-type setting
People who currently receive respite in our bed-based, residential respite facilities but who would prefer to receive respite in a community setting.
As a CCG we have recently taken on responsibility for carrying out Care and Treatment Reviews (CTR) for our Transforming Care work, which is allowing us to gain a better understanding of people with learning disabilities and/or autism in inpatient units. In this way Shared Lives will support us in delivering our Transforming Care commitments and ensure that people get the support that they need in the community.
Martyn Miller from Avalon Shared Lives scheme had the following to say:
“We currently have a small number of Shared Lives carers in the area and we are pleased to be working with the CCG to develop new referral pathways into Shared Lives from health. We will be looking to recruit more Shared Lives carers in the South Tees area to expand our current scheme and offer local people a chance to be supported in family homes, either for long-term live in arrangements or for short breaks with a Shared Lives family to compliment other support.
The local council already know of Shared Lives and fund a small number of arrangements for people to live in a Shared Lives household but this will be the first time that the CCG have commissioned Shared Lives- they are the trailblazers.
When asked what he is most excited about the programme, Mark Burdon from South Tees CCG said, “It’s the opportunity to offer something that is personalised to people in the area. We have worked with other provider organisations in the past but this is the first time we will have worked with Shared Lives. We have tended to offer people medically traditional options and having a new pool of skilled Shared Lives carers who can support people in this way will improve many people’s quality of life.
In three years’ time we hope that Shared Lives will be as well-known as residential or homecare, and with that, the health and wellbeing of local people will be improved and they will receive support that they want, in a place that they want.
The north east has been chosen as an Accelerator Region and will therefore receive some additional support to develop Shared Lives across the region. We have been advertising in the local area for a part-time Regional Officer and we will be holding interviews for the role in the next week.
Scaling up Shared Lives in Healthcare - Learning more about our new partner areas
Fiona and Jenni have been promoting the Shared Lives and NHS England partnership and building relationships with the newly announced CCGs and Shared Lives schemes who will be taking the project forward. The five areas who will be receiving a share of NHS England funding to develop the Shared Lives model for health are Barnsley, Bolton, South Tees, Southern Derbyshire and a partnership of Bristol, North Somerset and South Gloucester. For more information about these announcements click here.
As well as health being the focus of Shared Lives week, it was also the main theme at our England conference which took place in Bristol this week. We were thrilled to be joined by James Sanderson, Director of Personalisation and Choice and Eileen Mitchell from the Person Centred Care Team at NHS England for a full day of seminars, workshops and presentations. You will be able to read more about our health themed conference shortly and see a video of James Sanderson’s presentation.
As part of the programme, we have identified 2 Accelerator Regions which will support the scaling up of Shared Lives across a region. These regions have now been identified as the North East and the Bristol, North Somerset, South Gloucester (BNSSG) regions. Next week we will be advertising to find a part time Regional Officer in each of the regions, vacancy details will be posted here
Over the next ten weeks we are going to do a feature on each of the five areas focusing on the schemes and projects that will benefit from the funding. We will be asking:
What do you believe the future looks like for Shared Lives within the NHS?
We value everyone who supports this programme, and we would like to offer you the opportunity to put forward any questions you have about the five areas receiving funding to develop Shared Lives in health.
Fiona and Jenni were absolutely delighted to welcome the five successful CCGs schemes and Shared Lives carers and people they support to the Shared Lives Plus Parliamentary Reception on 19th October to officially launch the programme as part of Shared Lives week.
We are pleased to announce that the following CCG’s will be investing in their local Shared Lives schemes, to develop Shared Lives for people with health needs
and a partnership of Bristol, North Somerset and South Gloucester CCGs
Simon Stevens, NHS England Chief Executive, said: “The five Shared Lives areas announced today have the chance to be at the forefront of delivering the kind of community and people-centred approach that will be a key part of NHS services in the future. It is vital that people with complex needs, including those with a learning disability and/or autism have the opportunity to benefit from the care, comfort and sense of independence that comes from living in a real family home.”
Barnsley, Bolton, South Tees along with Bristol, North Somerset and South Gloucester CCG’s were all represented at the exciting event. Southern Derbyshire CCG and Derby City Shared Lives scheme were not able to make it but we managed to represent them in a photo so they didn’t feel left out!
Hello everyone and welcome to our latest blog on our work with NHS England. You may have recently seen Fiona Clark’s guest blog on the NHS England website, if not you can read it here.
Shared Lives Plus have had a hectic few weeks with the NHS programme, Fiona and Jenni are still travelling around the country on their journey to visit Shared Lives schemes and CCGs who are applying for match funding to develop Shared Lives for health in their area. It’s been a hectic couple of weeks for both, but they have been ‘privileged’ to meet so many dedicated people along the way.
Last week Fiona and Jenni took park in a Shared Lives Plus seminar on Intermediate Care, giving presentations and leading workshops.
There were nearly 70 delegates from across England and Wales and they were a mix of people such as health commissioners, hospital staff, social care workers and Shared Lives.
Jenni Kirkham, NHS Programme Officer says: “It was great to be with so many people who are keen to work with us to develop a Shared Lives model for Intermediate Care and the next year is going to be exciting to watch Shared Lives schemes recruiting carers who are ready to support people at their homes following a stay in hospital. “
The areas who are applying for match funding for the NHS England programme have until the end of September to get their final applications in to us. Shared Lives Plus and NHS England will be making the decision as to which areas will receive match funding in the first week of October and we hope to make the public announcement in mid-October, in Shared Lives week. Check out our Twitter account (@SharedLivesPlus) for updates on all NHS related information and announcements on Shared Lives Plus week, including the annual Parliamentary Reception on 19 October 2016.
With Jenni and Fiona travelling the country at the moment, working with and visiting schemes and CCGs, now is the perfect time for everyone to get to know the faces behind the great work that Shared Lives Plus is doing with NHS England.
This week we will be learning all about Jenni Kirkham, our NHS Programme Officer, who as all our staff will tell you is very enthusiastic about not only her own work with the NHS but developing and spreading awareness of Shared Lives as a whole.
I sat down with Jenni earlier in the week for a chat about her career so far and her work with developing Shared Lives with the NHS.
Jenni, Can you tell me about your career so far and how it has lead to you working on the NHS programme for Shared Lives Plus?
“My career to date has been varied, but has the common denominator is that it has always involved working with people. In my early days I got a job at the local authority housing team, working in customer service and managing the housing allocations process with people. From there I moved into social services and trained as a community occupational therapist assistant, which meant I did assessments and then fitted equipment in people’s homes that meant they were able to live well at home.
I have worked as a deputy manager of a hostel for homeless families too. The idea of “home” seems to be quite central to my career; I spent the next 8 years as Care Manager of various Home Instead Senior Care companies in Merseyside. I have now worked for Shared Lives Plus for 18 months, the first 12 months I worked in Support and Quality, supporting Shared Lives schemes with guidance and queries. In 2014 I also spent a year out in Australia! I prepared to spend a year travelling from place to place, but I actually found a place I felt I could call home and settled there for 9 of the 12 months- once again reinforcing to me how important it is to have a place you can call home. “
Jenni, everyone at Shared Lives Plus admires your enthusiasm and you clearly enjoy your role, what is it you love about your work with the NHS?
“I love that I am able to work towards raising the profile of Shared Lives within health, where for many people Shared Lives is an entirely new concept. I find that working with the staff and carers at Shared Lives schemes is inspirational and I enjoy working with them to develop and grow their schemes, to enable more people to have the choice of living in a home with family around them.
Each time people hear of the ways in which a person has blossomed when being supported within a Shared Lives arrangement, it raises the expectations of what people can achieve and how people with long-term health conditions can live well in their community- no one should be limited to where or how they live, just because of a lack of options in their area forces them into inappropriate residential or institutional accommodation.”
You can read one of the amazing Shared Lives arrangements Jenni is referring to in the here
Hello everyone and welcome to our latest “Scaling up Shared Lives in Healthcare” blog. This week we’re celebrating the work that our Shared Lives carers do in helping people with learning disabilities have the highest quality of life possible. As you may know Shared Lives Plus has recently received a £1.75 million pound grant from NHS England. This is to help CCGs (Clinical Commissioning Groups) and NHS Trusts in England to offer Shared Lives locally as an alternative approach to traditional healthcare for people.
Since our last update, Fiona Clark, (the NHS Programme Director) and Jenni Kirkham, (NHS Programme Officer) have set off on their travels around the country to visit the CCG’s and Shared Lives schemes who are interested in developing Shared Lives services within their communities . They are covering the length and breadth of the country to support the CCGs and schemes to complete the work needed to be eligible for the match funding available from NHS England to develop the scheme.
With care transforming as society and the NHS adjust to circumstances, we believe it is important that people have a choice to live a life that they are happy with, and one which is suitable for every person’s individual needs and aspirations.
We decided that the best way to show everyone how Shared Lives can have a positive and meaningful impact on a person living with a learning disability, was to let James, who has lived experience, tell you himself.
James says; “I don’t feel like I have a learning disability, but I know that I’ve got one, because of all the support I get now in Shared Lives. Before I came to Shared Lives I was not allowed to do things I could do and always needed staff with me- often doing things I could do myself. “
James has epilepsy and a learning disability. He was diagnosed with epilepsy when he was 6 years old and then until the age of 40 was in specialist care. Firstly at St Elizabeth’s in Hertfordshire, very near his family home and then residential care at the National Centre for Epilepsy in Chalfont, Buckinghamshire.
James feels he did not learn new things before he joined Shared Lives but now he has more freedom to do the things he wants to do.
The Shared Lives model will support people who have needs which make it hard for them to live on their own. This is achieved by matching them with a Shared Lives carer to share their family and lives, receiving care and support in the community. People using Shared Lives may have learning disabilities, dementia, mental health problems or other needs which require long or short term support. It will offer them the opportunity to either live with their matched and approved Shared Lives carer, or visit them regularly for day support or overnight breaks.
James’ Shared Lives carer has had a remarkable impact on his life, helping James become more confident and independent. He now feels confident to go to town and shop, have lunch in his favourite place.
James: “My life is friendlier, Andy, and others, have helped me make more friends. Andy has helped me to do more things that I can do myself now – cooking, the washing, ironing, walking out with Bronte the dog- normal stuff that everyone does.”laces and meet new friends
When Andy asked James, a few years ago, what he wanted his life to be like, the reply was ‘more friends and a job that I can get paid for’. Since then this is what James and Andy have been working towards.
Andy said: “Now, building up James’ community connections’ and using his skills to feel valued and have purpose are key to a good and happy life. The frequency of epileptic seizures has significantly decreased to the extent that he has not had a seizure for over 18 months. James says he is ‘not bored now’ and that there is’ always something to look forward to and do’. James can get up in the morning, something he just couldn’t do before and his thinking and decision making is vastly improved. However, this has not always been the case.”
A few years ago James epileptic seizures meant that he has spent time in hospitals. Between having seizures and taking his medication, James was prevented from doing much in the past and feels he was almost forgotten.
In December 2012 epileptic seizures clustered and in the next two months James had 12 hospital admissions for varying lengths of time. All local hospitals and one in North London tried totreat James. Each time more medication was prescribed that had significant impact on James without decreasing the seizures. James was put in an induced coma and spent 3 weeks in Critical Care.
He was prevented from doing much in the past and feels he was almost forgotten. We decided to ask him, if he thought that people in hospital waiting for a place to provide them with care, could benefit from Shared Lives?
Being a part of a Shared Lives arrangement provides people with a family environment, independence and allows people to live the life they want. James, with the help of Andy’s support has become a part of the community, volunteering at the local Country Market every week which he loves. He has also has just started a self- funded training post in a local shop that could lead to a job in a large supermarket.James said: “Yes, they could.” He says that when he came out of hospital, after many visits because of epilepsy, he was supported by people he knew and who knew him really well. He was in a place he felt safe and comfortable and this helped him get better. He believes other people would feel the same.
James’ life has completely changed for the better. He gives a training session to new carers about epilepsy once a month, has helped lead a workshop on Community Connecting at the Shared Lives Plus conference and is part of a team that supports health checks for Shared Lives schemes.
He presents his story, ‘Two Men and a Dog’ about how Shared Lives has changed his life, to various audiences. James is also a Co- Director, with Andy and one other, of a registered Community Interest Company, called ‘Local Social’ that aims to support socially isolated people connect with their community. Andy works with James on all these activities that use James’ knowledge and skills to develop a confident and fulfilling life.
NHS Blog - 25th August
We have recently enjoyed some annual leave and now we’re right back in the swing of things for the very busy, upcoming, next few months.
In than last couple of weeks Jenni and I have been preparing to start our visits to the CCGs and Shared Lives schemes who have been shortlisted to go through to the final round to receive match funding to develop their proposals. This has involved filling our diaries with visits around the country (it’s going to be a very busy September), and we’ll keep you all updated. We’re also preparing the detailed paperwork required to ensure we get all the information we need to make sure the final shortlist of CCGs and Shared Lives schemes are going to be able to deliver on the plans they have set out.
We’re also beginning to look at what we need to do to start evaluating the Programme to ensure we are getting the results we need to improve people’s lives and make sure we are getting best value for money from the funding provided by NHS England.
We have started to draw together the other projects that are within Shared Lives and look at how they complement, and perhaps be further developed through the NHS Programme. This applies particularly to the Mental Health Project and the Intermediate Care Project – all very exciting.
Jenni and I have recently read VODG (Voluntary Organisations Disability Group) latest thought leadership paper which is calling for closer working between the NHS and the voluntary sector. We support this paper and believe that social care providers are right to call for the voluntary sector to be recognised as central to the NHS and health system. Through Shared Lives Plus we see daily the difference having a variety of options for health care can make to people’s lives, we understand how one option may suit certain people’s needs but not everyone. Our NHS programme embodies this and we appreciate not only the funding, but the continuous support from NHS England to better the lives of patients.
We ourselves understand the challenges that working closely together may bring but we’re fully committed to our NHS programme, working in partnership and really building relationships with everyone involved in order to reach our goal of improving the lives of as many people as possible through the NHS Programme and beyond.
For any partners or readers that are interested in learning more, Rhidian Hughes, Chief executive of VODG, has written a blog about the paper which you can find here.
That’s us for the next two weeks, we hope you’re all enjoying the blog and our updates on the NHS Programme, as much as we are working on it. As usual or if this is your first time reading about our exciting NHS Programme you can read previous blogs on the links below.
Hello and welcome to our second “Scaling up Shared Lives in Healthcare” blog. We’ve been very busy the past couple of weeks and would like to keep you all updated on what we are doing.
As you may know in May this year, CCG’s and NHS trusts England were asked to write to us at Shared Lives Plus, to express their interest in applying for match funding to develop Shared Lives in their local area for people with healthcare needs. After applying some shortlisting criteria to each of the expressions of interest we invited areas in England to write up more detailed project plans, budgets, and formalise their initial ideas. The pro forma template we created with the expertise of the wider Shared Lives Plus team was finalised. This allowed the areas that were successful in the first round to work up their projects to continue their applications for match funding through the programme.
They have been telling us how they see the Shared Lives model being used, to be able to support the local needs and priorities of their local government. We are really excited to see how they think they can make it happen.
We are starting to arrange dates to go and visit each of the areas and visit all of the project leads at their CCG and Shared Lives schemes. Each of the areas is still and application process with none of them being agreed yet or match funding. We would really like to involve Shared Lives carers in the process and will be looking to include their existing Shared Lives carers in these early conversations. Shared Lives Plus want to ensure that they know about the programme and the amazing potential for their local areas.
The Shared Lives model supports people who have needs which make it hard for them to live on their own. It matches people who may have a learning disability, dementia, mental health problems or other needs to Shared Lives carers. They share their family and lives, get care and support whilst getting involved and building relationships in the community.
Shared Lives can improve people’s quality of life, it did for Anne. She is a vulnerable lady with a moderate learning disability. Anne came to Shared Lives due to her vulnerability and needs around her care and support. In the start she had difficulty walking and used a wheelchair frequently to get around. She had low self-esteem and confidence and had very poor eyesight. After moving in with her Shared Lives carer Georgia, it was apparent that Anne’s mobility problems stemmed from wearing ill-fitting shoes. It was also discovered that her poor eyesight was due to wearing glasses that were not prescribed for her.
Her first days with her Shared Lives carer were spent having her eyes tested and purchasing new glasses, buying new shoes and a whole new wardrobe of outfits that she chose and having her hair done at the hairdressers. Ann has a new lease of life, she enjoys spending time at the gardens where she works and has a good friendship with Georgia and the other members of Shared Lives carer’s family and friends. They have holidays abroad and in the UK.
Anne said “I love Georgia; I have a lovely bedroom and a nice comfortable bed with my own telly”. Georgia believes that Ann has “found her voice”; she is making choices for herself and is becoming a confident young woman.
Thanks for reading our latest blog, we’ll continue to keep you all updated on what is going on in the exciting months ahead.
You can get more information and read our previous blog here