Sharing lives and self-isolating

Across the UK, thousands of Shared Lives households are at home as self-isolation becomes mandatory. This means that disabled people, people with mental health problems and others who need significant support are living in a safe place with their Shared Lives carer and for many, this is the safest place they could be. Unlike other services which rely on a staff rota, no one need come in and out of the home and the household can be more resilient and less disrupted by self-isolation than services which lose workers who are self-isolating but currently unable to get tested.

We also know that Shared Lives households are under pressure:

  1. 80% of Shared Lives carers are over 50 and 20% are over 70 and themselves in the at-risk group.
  2. Usually, Shared Lives should not be 24/7 care, but at the moment it is: this can mean huge pressure on households as routines are disrupted and there is no break from caring for someone who is distressed and whose behaviour may be difficult to manage.
  3. Like others, Shared Lives households are largely without protective equipment (PPE) and facing shortages of basics and food caused by panic buying.
  4. As short breaks and day support services are cancelled, many self-employed Shared Lives carers are without income, and the government has not yet addressed this for the self-employed. This also means there are Shared Lives carers with capacity to do more and who want to help. We’ve had members wanting to open their homes to patients and NHS staff.

At Shared Lives Plus, our team moved quickly to 100% home working and online and have been working flat out on two priorities for our members: inform and connect. People need the right information – not always easy when most government info has been unclear, incomplete or has needed to be corrected. Not helped by government making a drastic u-turn in its strategy (which was the right thing to do: their modelling turned out to be wrong) but then telling people nothing had really changed: far better to have been clear that the strategy had changed and why. Connection will be of growing importance the longer this situation continues.

We are addressing the four pressure points above:

  1. We have issued guidance for local organisations on identifying and prioritising the households most at risk, mitigating risks where possible and planning for possible scenarios, including infections within the home and Shared Lives carers being unable to care. We have outlined fast-tracked procedures to get new support carers approved.
  2. The key message from our guidance on supporting Shared Lives households under pressure is to help the household build its resilience and two kinds of connections: with other Shared Lives households and with neighbours. We are aiming to get a new Positive Behaviour Support advice service up and running shortly if we can resource it. We’re helping members share what’s working and the team are taking calls where people are struggling.
  3. We have been ensuring that Shared Lives carers, and community care services more generally, are being considered along with other social care services, for PPE and giving practical advice. The UK’s failure to plan for PPE demand mystifies me and has left thousands of the people we rely on most at unnecessary risk. This appears to be being rectified, but local problems are still huge. We’ve written to all the supermarkets explaining what Shared Lives carers and Homesharers are why they need access to food.
  4. Government announcements are imminent about support for the self-employed. In the meantime, our advice to Shared Lives schemes has been: do everything you can to support your Shared Lives carers. We will need everyone during this crisis and in the recession which will follow it. Councils have been given funding to support stability in the social care sector, and the good ones are using it to keep providers afloat and social care workers in this vital workforce. We are supporting Shared Lives schemes to identify their spare capacity and consider how Shared Lives carers who are not currently working can safely support households who are struggling, and respond where possible to the need to discharge thousands of people from hospital. Virus testing, adequate PPE and ensuring people and organisations are working as part of one team will be vital in making this work.

I’d like to thank the 10,000 Shared Lives households and 500 Homeshare households who are contributing so much to keeping people safe and well during this crisis, and the Shared Lives Plus team who have made me so proud to work for such a great charity these past couple of weeks.

James and Bronte
James and Bronte digging vegetables at home, taken by Shared Lives carer Andy

“This is my second home.” Help us grow Shared Lives in Wales.

Wales was the first of the four UK nations to have Shared Lives services across almost every Local Authority area and grew nearly a quarter since 2015/16. Over 500 Shared Lives carers open their homes and lives to 1,100 people who need support with daily life across Wales, including those with dementia, mental ill health, older age or young people leaving care.

When Jen first moved in with Rachel, her Shared Lives carer in Bridgend, she didn’t go out, had few friends and needed daily insulin injections. Now Jen’s been able to reduce her diabetic medication, has made friends and enjoys yoga and tai chi: “I walk the dogs, care for the chickens and help around the house. I’m in touch with my family and stay on weekends. This is my second home.”

Rachel has supported Jen for 15 years, working with the ategi Shared Lives organisation: “My life changed and I went through a bit of an upheaval. Shared Lives gave me the chance to work flexibly, bringing up my children and giving someone else opportunities at the same time. Allowing people dignity and to protect their rights is important to me.”

Recently, we met the First Minister Mark Drakeford AM and Julie Morgan AM, Deputy Minister for Health and Social Services, to tell them that with the right support and investment, Shared Lives could create positive outcomes  for up to 55,000 older people in Wales. We are now looking for local authority partners to make that happen.

Mark Drakeford Julie Morgan
Mark Drakeford Julie Morgan

The most significant growth of Shared Lives care in Wales has been in short breaks and respite to help older people and those with dementia manage better in the community. In South East Wales Shared Lives there’s been a 32% growth  in support for people over 50 since 2017/18, and a 42% growth in support for people over 65 years of age. If all schemes increased support for older people in line with the rise achieved by South East Wales over 100 more older people would be supported.

Read our State of the Nation Report in Welsh here and English here.

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!

How would we know?

If an area becomes ‘asset-based’ in everything it does, how would you know? You would expect to see everyone – public services and charities; citizens and people with power – thinking, speaking and behaving differently. This is the second of three blogs written with the Chair of Think Local, Act Personal, Clenton Farquharson MBE, and available in full here. Last time, we revisited the Asset-Based Area (ABA) model which tried to distil down how an area can become asset-based in everything it does from strategy down to the grassroots, into ten actions, starting with mapping your local assets, and including sharing power with people who are usually excluded, and building a diverse range of community approaches which are now gathered in an online catalogue. Three years after the original thinking, we are developing the ABA model in more detail through the Social Care Innovation network.

In this blog, we want to think about how we would know that an area had become asset-based. What would we measure and how?

Greater Manchester has adopted use of system activity measures collected every quarter, combined with a range of personal outcome measures collected locally across the city region. These include measures already well-established across public services, such as health outcomes, measures of demand and cost, and wellbeing outcomes: recognising that wellbeing – living a good life in a good home and a welcoming community – is intertwined with more clinical outcomes.

Key Human Indicators

Many areas and organisations have Key Performance Indicators (KPIs). Perhaps every area needs Key Human Indicators. Are people achieving wellbeing? That usually means that people who need support are able to experience the right balance of independence and connection for them, which will change at different times in their lives. For workers and systems, KHIs will include warmth, kindness (as set out in Julia Unwin’s brilliant report) and dignity. Networks can be more important than bureaucratic service structures. In Shared Lives, friendships are seen as key indicators of wellbeing, so Shared Lives Plus’ national outcomes measuring tool asks participants how many friends they have and whether Shared Lives support is helping them make and sustain those connections, or getting in the way.

Read the rest of this blog on the Social Care Institute for Excellence website, in the Social Care Innovation Network’s minisite.

See you in the New Year

At a time of year when many of us are focused on family events and our closest relationships – and when it can be most painful to lack those connections- this story from PossAbilities Shared Lives in the North West struck a chord with me:

‘Colin’ stays with his Shared Lives carer Molly a few times a year for short breaks, so when he asked her to help arrange his 40th Birthday party, it was quite a challenge, but Molly went all out to organise, food, music, invites and so on. Colin was overjoyed with the arrangements, but very disappointed when few guests turned up. Molly isn’t the giving up kind though, so she suggested they try again for his 41st. She rallied all his friends and work colleagues and kept contacting people until she was sure that lots would come this time. As a result, Colin enjoyed the best birthday party ever. Even better, he met his first girlfriend through this party: something he’d been dreaming of for many years.

That kind of life-changing event happens when you have someone on your side, who never gives up because they think of you as a friend or family member, not just a ‘service user’. Our challenge is to bring those kinds of relationships to thousands more people, through Shared Lives, Homeshare, and in 2020, new ways for people to share their homes and lives, and support each other.

It’s also lays down a challenge for the whole of social care: how do we move away from low-cost, low-longevity care and support ‘transactions’ between professionals and clients, and instead invest in caring relationships that people choose, that everyone contributes to, and that last the distance? This isn’t just a funding issue: parts of our sector have a 25% – 30% staff turnover rate, or services that lock people into the most expensive and least effective part of the system. There is a financial as well as a personal cost to those statistics; money which would be better spent recruiting the right people into the right roles and offering them the right combination of support and freedom to help people live good lives: independent but connected.

So as we look back at 2019 we are proud of the scale of our membership network’s achievements, reaching over 14,000 people:

  • In Wales there are over 1,100 people using Shared Lives – passing the 1,000 mark for the first time.
  • In Scotland the number of people using Shared Lives passed 500.
  • And the UK has over 1,000 Homeshare participants for the first time.

…and we’re proud of the quality and outcomes of that work: 98% good or outstanding from the latest CQC inspection figures, and nearly 90% of people completing our national outcomes tool saying that they are more socially connected through their Shared Lives support, as well as 83% saying it improved their physical health and 88% their emotional health.

We’re proud of the innovations we led this year including partnerships with:

And we’re also proud of how we approached our work: putting people with lived experience and front line workers in the lead wherever we can, such as our new Shared Lives Carer Champions, who are supporting other Shared Lives carers in their regions, who joined our Ambassadors with lived experience, to help us to reshape our work and do more on a peer-to-peer basis. We began to explore how to become a rights-based organisation with support from the British Institute of Human Rights and a domestic abuse aware organisation and team.

We’ve never had bigger challenges in social and health care, which means in 2020 we will need big ambitions when it comes to scale, results and the values we bring to our work. It’s not going to be an easy ride, but there are too many people who don’t have the lives, homes and relationships they dream of for us to give up, so I’ll be keeping Molly’s example in mind, whenever the coming year feels like a struggle!

I hope everyone enjoys a restful and well-earned break over Christmas and the New Year. We’ll see you in 2020.

Best days

Chris and Peter were matched together by Moray Shared Lives in Scotland. Chris is a retired farmer who wanted to give people the chance to benefit from visiting his land and the woodlands he has planted. He was approved by Shared Lives Moray to take on the Shared Lives role and then matched with Peter, who visits for day support twice a week. Peter has dementia and lives at home where he is cared for by his wife. The two four or five hour sessions a week with Chris give everyone time to re-charge their batteries and lead a life beyond giving and receiving care. You can see and hear the two men talk about their Shared Life here

 

The film was made after Peter had recently lost his ability to walk following an adverse

reaction to prescription drugs. The time that Chris has, combined with the opportunities he provides for walking regularly, helped Peter recover his ability to walk, which has enabled him to continue to live in his own home and community. Without the time and support given by Chris, Peter is likely to have been placed in a residential care home or provided with 24 hour paid carers in his own home. In both cases his life would have diminished significantly and the costs of caring for him would have risen sharply. 

 

Peter is not always as alert and lucid as on the day of filming. Everyone involved believes that the support from Chris brings Peter some of his best days.

Without Shared Lives I wouldn’t be me

ITV News featured Shared Lives over Easter, with a different story from each UK region. Here is the short film from Derbyshire about Annie and Sarah:

https://www.itv.com/news/central/2019-04-19/thousands-benefit-from-new-social-care-scheme/

And on the same page, Chris who lives in Sellyoak in Birmingham, who moved into Shared Lives after living in a care home for 18 years. “The best thing is the company.”