Lives lost

We have been extremely sad to learn of a small but growing number of deaths within Shared Lives households and amongst those who use Shared Lives for day support or short breaks. We have been told of two Shared Lives carers who have sadly died from COVID-19. One bereaved partner continues to care for the person who lives with them, during this most difficult time. As a national network, we are trying to ensure that every life lost is recorded. We will be talking with members and families over the coming months about how best to celebrate everything these individuals achieved together, and to mourn their loss. Their numbers, sadly, will grow, but we must not let them be reduced to numbers: each was an individual who gave so much to those they shared their lives with, and who was much loved.

The thoughts of all of us at Shared Lives Plus are with the families and households who are grieving.

Stepping into my own power

My colleague Meg Lewis is one of our Ambassadors, who has blogged about her experiences, interviewed NHS chief, Simon Stevens, speaks to national audiences (for instance, we are doing a double act on safeguarding for the DBS on March 12th), and contributes to our planning and thinking about improving the model. Meg and Nick Gordon from our communications team worked on this film, in which Meg reflects on her journey from hospital ward to shared lives, and now into her own place, which she shares with her dog, Flower. Meg went back to the psychiatric hospital where she lived for four years and talked with the clinicians about her journey: “I knew that I needed to feel a part of something and move away from clinical, boundaried care. Because those people do care, but when they go home they have to switch you off.” It’s a powerful and moving story about hope and, as Meg puts it, how to “step into your own power and change the course of your life.” Enjoy!

What could be

Finally, social care is being recognised by our political leaders as vital to our nation’s health and wellbeing. All parties now recognise that ordinary people can be called upon to pay vast amounts towards their care, in contrast to our free-at-the-point-of-need NHS. There is public recognition of what social care is, for the first time. But now we need to visualise what it could be.

Our annual State of Shared Lives Sector reports give a glimpse of a possible future. They have consistently shown that Shared Lives is growing in England, and now we have evidence of new growth in all four home nations. They have also highlighted the difference Shared Lives makes to people’s lives. Many people who might otherwise have lived on their own or in a care home are finding a settled home with their chosen Shared Lives household. Meanwhile, a new group of older people and others who live with their families, but need regular overnight or daytime breaks, get those breaks from visiting their chosen Shared Lives carer, often matched with them because they both enjoy the same activities, rather than struggling with the stress and disruption which more institutionalised breaks services can bring. People live well and sometimes achieve the impossible.

This year our annual report for England (as reported in Community Care) paints both an encouraging and concerning picture. In previous years, Shared Lives has grown strongly, despite the cuts which are shrinking all other forms of social care. The net growth has been about 1000 additional people per year. This year, the number of people using Shared Lives in England has grown by around 580, to just under 12,000 people, around half of whom are living with their Shared Lives carer, and the other half are split between short breaks and daytime support. Look at the numbers of people using Shared Lives by region, however, and it is clear that there is a widening gap between those regions which are accelerating and those which have in previous years been stalled, and are now starting to slip back. So the regions which are growing, have added over 1,100 additional people. Half of this growth comes from the North West, with London and the South West splitting most of the rest. There are signs of growth in the North East, which has been one of the smallest regions and where we are working with directors’ association ADASS and the region’s Shared Lives schemes and partners to create a regional hub. The South East and Yorkshire have seen significant reductions, however, after having previously been regions which were using and developing Shared Lives strongly. The East and West Midlands remain essentially unchanged and the East of England, which has been the smallest region for some time, is now falling. Meanwhile, the model is growing in Scotland, Wales and Northern Ireland and we have embarked upon ambitious new programmes in each nation, with strong support from the Wales Government in particular.

With so much news about cuts and the crisis in the NHS, it is easy to believe that the future of public services will just be less of what we have now. But we believe

Feeling important

“Feeling important is awesome. I want everyone to feel important.” Nick, one of our Ambassadors opened our annual conference alongside the incoming President of ADASS, Margaret Willcox as co-chairs and instantly had the whole room of Shared Lives and Homeshare colleagues and participants engaged. He was talking about the experience of working with Shared Lives Plus as an Ambassador, doing work which makes a difference, as well as about the feeling of belonging and mattering that is at the heart of all good Shared Lives.

At the annual social services conference the week before, I’d enjoyed, as I do each year, catching up with a huge number of colleagues, making new links and learning about some of the most interesting initiatives around the country (not to mention being rubbish in the annual quiz). But a question from a parent of a disabled daughter stuck with me: “I’ve been looking at all these sessions and discussions and wondering where I will find my daughter in them?” The conference did include a small number of sessions led by people with lived experience including the launch of a new model of ‘coproduction’ from the group of people with lived experience at the heart of the Think Local, Act Personal partnership and an inspiring fringe event with DanceSyndrome and Community Catalysts. But in too many of the main sessions there was a yawning gap between the discussion’s topic and participants and the people whose lives were being discussed. When you put a lot of ‘important’ people together, it can be easy to lose sight of what and who is really important. As Nick told us at our event, it’s great feeling important but that feeling should be for everyone.

Our conference now attracts Shared Lives carers and people using Shared Lives, as well as one or two family members and there are sessions which are designed particularly with them in mind, but I suspect that they will at times have felt that gap in some of the discussions at our event too. Involving people who use Shared Lives and Shared Lives carers as speakers, co-chairs and part of the support team has made a huge difference and hopefully prevents us from straying too far from what we are all supposed to be about, but we know we have further to go. Now that our conference has a Homeshare strand for the first time, we are also starting to think about how people who live in Homeshare households can be a part of future events.

Coproduction, as experts like Clenton Farquharson will tell you, is a journey. If you think you’ve arrived, you’ve probably just stopped. At our event, I was immensely proud of the work that we do, of our team and the membership network of which we are a part. It’s rare I think to be at an event for 200+ which feels both nationally important and ‘like family’ as one participant put it, not to mention smoothly run by our amazing office team. But it’s important I think to keep asking ourselves: where are the people who we are talking about in these discussions? If they are in the room, leading those discussions, having helped to design them, the answer to that question is much more likely to be clear to everyone.

Chris’s move to our Shared Lives home

Yesterday I published Chris’ own account of his move into a Shared Lives household. Here, Alison, his Shared Lives carer, very kindly shares her story. Alison writes:

Before moving here Chris had lived for 19 years in a small residential home since his teenage years. It was an excellent home where he was well supported and enjoyed a very good relationship with staff and some residents. I wondered how he would adjust to life in a small family home and whether he would miss having a big group of people to keep him company and support him. It was daunting to know that a team of 12 carers was being replaced by just one. Me!

One year on and I can truthfully say that Chris has never looked back. Shared Lives can often change people’s lives suddenly and dramatically for the better, but at other times it makes a less obvious but no less important difference. For Chris I would say it has been a gentle shift from a subtly institutionalised life to one as an ordinary member of an ordinary family doing ordinary things.

He seems to feel a greater sense of freedom – he makes more choices, comes and goes as he pleases and stays at home alone for agreed periods of time. He seeks permission much less and more often tells me what he is going to do instead of asking. He is encouraged to make his own decisions even if I don’t agree with them – this is much harder for me than it is for Chris! We have many conversations about honesty – Chris gets better at telling me the truth rather than just what he thinks I want to hear, and understanding that if I don’t like it then that is my problem and not his!

His social circle has expanded dramatically – he has met

My Move to Shared Lives

Chris has very kindly shared his story of moving into a Shared Lives household from residential care. Thanks Chris! Tomorrow, I’ll post Shared Lives carer Alison’s account of the same move. Chris is with the Birmingham Shared Lives Scheme and he writes:

Moving from residential care to Shared Lives

When I lived in residential care I did have independence but other clients came first, I was too independent for them.

When the social worker did my annual review I only needed 23 hours support per day not 24 hours. There was some meetings with the social worker and later an advocate, we talked about good and bad points of residential against Shared Lives. I was worried about moving to a house with just a couple – what if they argued or were too much into each other and I got ignored. But in the end Shared Lives won out as there would be more independent things I could do what I couldn’t do in residential.

First I went to visit a Shared Lives carer twice but at that time he wasn’t ready for a permanent arrangement. Then Andrew who works for Shared Lives told me about Alison, then it was a visit to see if I liked her then a stop overnight. Then a final meeting to set up for moving.  At first I walked the dog sometimes. I sorted out my bedroom, my bus pass, medication and medical treatment. I got to know the area and met Alison’s family and friends.

How is Shared Lives different from residential care?

There are less forms to fill in. I am more independent. I go to more places than before, like we just went to Brighton – I couldn’t do that before, there would be a lot more people involved and a lot of planning. Our trip to Rome would have taken much longer to plan for example how many staff and clients were going. In residential I couldn’t go out to a club without having to do a risk assessment and care plan. Since I moved in I think we have been on 9 trips. I also stay with Sylvia and Carol for respite, they are Shared Lives carers too.

I would say it is more of a family. I do get on with everybody – I get on very good with Pilui (Alison’s husband), I get on with Alison very good, I would say more of a closeness.

In residential I had to take my tablets exactly 8am and 6pm,

Go Shared Lives!

This is a guest blog from Michelle McDaid, a policy manager at the Department of Health, who has often worked behind the scenes to develop policies which help make the Shared Lives model a possibility for more people. Michelle’s blog has also appeared on the Dept Health website:

On a Friday in April I had the privilege to visit a Shared Lives family in Bexley. Through Shared Lives Plus I was put in touch with Bexley Council and the brilliant Catherine Nairn who is the Manager of the Bexley Shared Lives Scheme.

Going out to visit Shared Lives is something I have wanted to do and experience for a very long time. But like lots of things, I kept putting it off. Pressure of work and all that!!  I work in social care policy at the Department of Health. One of the areas we look at is improvement in the quality of care, for both those using it and for the staff who work in it. Over the years I have worked very closely with Alex and Mark at Shared Lives Plus, on Shared Lives issues. But I have to confess that I never took the time to go out and meet a family.

The Department runs something called Connecting. It’s a ‘back-to-the-floor’ scheme to help staff connect to the experiences of patients and people using services. As a ‘policy maker’ it is vital for me to see in action the people who provide and use the adult social care system. I couldn’t do my job without doing so – which is why I jumped at the chance to go out to Bexley.

I visited the council offices first where I met Catherine. I also met Caroline Maclean Head of Service, Complex Care and the Council’s director of adult social care Tom Brown and Mandy Grandini who works alongside Catherine.

We had a long and extremely interesting chat about Shared Lives. I learnt all about the Scheme in Bexley – all about the vetting process – how the Scheme is set up and what the aims of the Council are in this area. It was incredibly uplifting to hear of the resource and support being put in to such an innovative and amazing scheme. I saw the most brilliant short film about a Shared Lives family. I have to say if anybody saw this, then personally I think they would be in no doubt of how this scheme can bring so much support and help to the person being cared for.

After our meeting, Catherine and I set off to meet the Shared Lives family. I have to say I felt slightly concerned about imposing myself on this family but I needn’t have worried. I was met at the door by the Shared Lives carers (who knew I was coming by the way). They were so lovely and friendly and welcomed me into their beautiful home. The couple look after three people with learning disabilities or other support needs. The two people I met were in their mid-fifties or early sixties. One had been living there nearly a year and the other person had been with the family for 16 years.

I met the first person who was a little bit shy at first, but after a short while came down from his room and joined in our conversation. A short while later I met the second person, who had been out volunteering which he does a few times a week. He began telling me

Life is not as scary as I thought

Here is Matt’s Shared Lives story: more stories on our website.

 

“My name is Matthew Sheppard and I have lived in Shared Lives for five years.

I live with Chris and Denis my carers and two other guys. I like living here because they respect my own space as it is very important to me and I am able to live as independently as possible and experience live to the fullest and days out, events, meetings and making friends.”

How long have those who support you been involved in Shared Lives?
Chris my carer grew up in a Shared Lives setting as his parents and grandparents are Shared Lives carers too. Chris and Denis have been Shared Lives carers for five years now.

What do you like about living in Shared Lives?
I used to find new things, new people, and experiences difficult as change was hard for me to understand but since living with Chris and Denis I have watched and experienced everyday life and seen life is not as scary as I thought. I now love meeting people and doing new things.

How has your lifestyle/health changed since living in Shared Lives?
I’m very healthy. Chris and Denis help me plan my weeks ahead for appointments such as doctors, dentist, days out and visitors and I have a calendar so I can keep track of what’s going on so I am able to understand better, and I get to experience lots of new things.

Tell us about your screwball rally races!
I love going on the screwball rally as I love cars. When we all go its great fun as everyone is in fancy dress and the cars are too and I get to see friends which I made the year before and get to check out their new car or see what they have done to the old car and then we all meet up for drinks and food and a party at the end of the day. We also meet up with my mum and her partner as they go ahead and meet us at new destination and I get to see lots of new places on the way. On the last rally, our car was in the French newspaper it was very exciting as all the people were waving at me as we drove through the villages.

What do you use to decorate the cars?
One year we painted our hands and put hand prints all over the car and the last car we did was my favourite because I love teddy bears. We stuck 200 teddy bears all over the car, we made it the teddy bears picnic and had picnics all over Europe – the best one was in the Pyrenees Mountains.

Is there anything else you would like to tell us about yourself?
I have lots of new hobbies too, I like computers, taking photos, and fishing trips. I use the net to pick up fish, my next aim is to try the fishing rod and this year I did the London to Brighton Land Rover run which was good fun and I did Brighton Colour Run – great fun, I got covered in lots of colour.

I also love to travel. Chris took me to Turkey which I loved especially going to all the different temples, sights, smells, sounds and different people that spoke funny and made me laugh and very different food. I especially loved it when we went to Miletus as an old lady made me a special breakfast and we sat on the floor to eat and share. After breakfast and lots of tea and laughter, she gave me a gift – a Turkish eye which was for good luck. She said it was a long time since she had had so much fun and laughter and was happy that I took the time to stop and have breakfast with her.”

Click here to see a collage of Matthew’s trips around Europe on the screwball rally!

Thank you to Lucy West and the Shared Lives Scheme in West Sussex, visit their website to discover more on becoming a Shared Lives carer or using Shared Lives:
Shared Lives West Sussex Website

Shared holidays

Sally has been a Shared Lives carer for three and a half years with the Guideposts scheme and is currently matched with four people who stay at different times for regular weekends and holidays. Sally writes about taking part in our Town, Sea and Country scheme which enables people to be matched with Shared Lives carers for homely and affordable holidays across anywhere in the UK. Working across local authority boundaries has been a barrier in the past to people taking a holiday wherever they want, whilst many accessible holidays are expensive and can feel institutionalised.

The matching process involved a short matching visit in which Sally and Geoffrey got to know each other a little and a long telephone conversation between Sally and Geoffrey’s long-term Shared Lives carer. Sally read through all of Geoffrey’s plans and risk assessment which she says were “detailed and included valuable practical advice”. This was Sally’s first holiday for someone from another Shared Lives scheme. She writes that after the visit was booked in:

“I was very pleased but after the initial joy I did experience a moment of ‘oh my goodness, what have I just agreed to!’ But then rational thinking returned – yes, it might seem a bit daunting but I was sure that with careful planning and a bit of hard work on my part and support from both schemes, a positive outcome would be achieved.

Geoffrey shared the first three days with a regular service user who was having a respite holiday. They established a good rapport and I was able to find activities to suit both. I spent time researching places to visit and things to do before and during Geoffrey’s stay. I knew he liked classical music and attending concerts so I booked tickets for a Snape Proms event given by the BBC Concert Orchestra. There were situations that could potentially cause Geoffrey great anxiety, so I tried to anticipate the ways in which he might perceive his surroundings in order to minimise such occasions and maintain his confidence. I kept a diary as a basis for personal reflection and for others to read to gain insight into how things had progressed. With Geoffrey’s permission I took a few photographs.

Overall we had a brilliant time! It was often hard and intense work but Geoffrey was able to discuss options for outings and the pros and cons that might arise. He was also familiar with ‘being on holiday’. I got to visit several local museums for the first time. My husband as a support worker joined us on trips when he could – to the concert and for our seaside fish and chips. Throughout I was well supported by both schemes, with

Minister meets Shared Lives carers in Newham

Thanks to Anna (anna@sharedlivesplus.org.uk), our Director of Support and Development, for this guest blog about a visit  from Rob Wilson MP, Minister for Civil Society, who went to Newham Shared Lives scheme during Carers Week and met one of our youngest Shared Lives carers and the family she supports:

Newham Shared Lives scheme is one of 12 Shared Lives schemes in England involved in our carer project with a focus on supporting people who live with a family or unpaid carer to use Shared Lives for respite or short breaks.  The project is funded by the Cabinet Office.

Brenda is a young Shared Lives carer who currently supports two people living with her in a long term arrangement, and supports Rhianna for regular short breaks.  Rhianna is a young woman in her early twenties with a learning disability and visual impairment who lives at home with her Mum, Debbie.  Rhianna also has a younger sister who is nine and two older siblings.

During the visit Debbie described how Shared Lives has been a lifeline for her.  She has a really close relationship with Rhianna, and that’s visible for all to see, but has her own health issues and a younger daughter at home too.  Debbie told us how she’d always had trouble in the past with respite services, Rhianna hadn’t enjoyed going there and she’d had issues with trusting the staff.  She now says how she has absolute trust in Brenda and how much Rhianna looks forward to going to stay for the weekend.  These weekends give Debbie an opportunity to have a rest and spend some quality time with her younger daughter too.

Rhianna told us about all the good times she’s had since going to stay with Brenda, including the O2, bowling and getting out and about. Brenda said they always decide together at the start of Rhianna’s stay what she’d like to do.  When the Minister asked Rhianna what she’d like to do with Brenda this weekend she said to go to Southend for the day which Brenda thought was a great idea!

The Minister asked Brenda about why, as a young (twenty-something) person she’d decided to become a Shared Lives carer.  Brenda explained that a friend of hers was a Shared Lives carer and she’d seen the effect, and she wanted to do it too.  She explained that she gets as much out of the experience as she gives, and that instead of doing things by herself she gets to do them with the people she’s supporting, and that she’s seen much more of London since becoming a Shared Lives carer than she had before.  Brenda actually lives with her Mum and uses the spare rooms in their home for Shared Lives.

For a young woman like Rhianna, to be supported by a young Shared Lives carer like Brenda is an amazing opportunity.  She is supported by one of her peers and it’s more of a relationship with a friend than a traditional care provider.  I know Brenda does much to link people in to what’s going on in the local community and that Rhianna gets to do the things that all twenty-somethings want to do, the sky really is the limit.

It really was an inspiring visit and the Minister took time to talk to Brenda, Rhianna and Debbie about their experiences, before they all took selfies.  Shared Lives offers such a personalised experience designed around the individual and is all about the relationship.  Although they’d only known each other a few months, Brenda, Debbie and Rhianna were obviously really close and had shared so much.  It’s a big deal for any family carer to trust someone else to support their family member, but the relationships we see every day in Shared Lives make that so much more possible and allow that “good life” that we all want.