New support for Shared Lives and Homeshare

We have launched some new support for people and organisations involved in Shared Lives and Homeshare:

  • A Positive Behaviour Support (PBS) helpline, staffed by experts from British Institute for Learning Disabilities (Bild) and supported by government and NHS England. Psychologist have taken the first calls helping Shared Lives carers who are finding behaviours challenging now that people are at home, with routines disrupted and day services closed.
  • A free subscription service for Shared Lives carers who are not members of Shared Lives Plus: this will make sure essential information and peer support gets to all Shared Lives carers during lockdown. This will run to at least June.
  • More regular support and network calls with all the UK’s Homeshare organisations.
  • Our ‘cuppa for carers’ catch up with #SharedLives carers and our support team – Tuesdays and Thursdays 3pm on Zoom – email us and click on the link we send or dial in: membership@sharedlivesplus.org.uk
  • We are working hard on the issue of income replacement for self-employed Shared Lives carers, with the backing of politicians of all parties. We are liaising with Treasury officials to ensure that the Chancellor’s income support scheme works with the Shared Lives tax break.
  • We are supporting Shared Lives schemes to get vital PPE equipment and access to other initiatives which should be available to the whole of social care.

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

A pandemic is no time to be alone

Amongst the many pieces of advice we are being offered as the Coronavirus looms over Spring, is that infected people should ‘self-isolate’. This is a striking phrase: in my organisation, we spend a lot of our time and energy on reducing isolation. Loneliness reached pandemic proportions long before we had heard of Covid-19. Many older people and others who have mobility problems, or social challenges, are of course chronically isolated already, so on the face of it, this particular piece of advice will be hard not to follow. The virus guidance also talks of ‘social distancing’: another phenomena which has already become endemic in too many communities.

In reality of course, people with virus will need food, groceries and medicines. Even if the illness itself is relatively mild, being infected with a virus that looms so large in our minds at present is going to be a worrying experience. People with good social support networks will be able to self-isolate with less suffering than those who are already isolated: they will have friends, family and neighbours willing and able to drop off supplies, even if they can’t have physical contact. They will have people to talk with on the phone. Self-isolation will be most difficult for the most isolated. For people for whom living alone is already precarious, it will bring its own dangers.

Being ill feels like an intensely personal experience: we become wrapped up in the symptoms and feel turned in our ourselves when we are suffering. But epidemics, whether physical viruses or public health emergencies like loneliness or obesity, are social events. Michael Marmot and others have been presenting the evidence for health as being socially-determined for years.

Now would be a good time to reach out to our neighbours, and people we think may be isolated or lonely. It may be possible to establish a connection and communication channels that prove vital during the expected height of the epidemic. A period of self-isolation is no time to feel alone.

 

“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.

We all have the right to have our voices heard

My new colleague Becky Viney-Wood has joined us as our first policy officer. Becky has been blogging as she meets our members and gets to grips with policy issues on numerous fronts. Here, Becky writes about advocacy and why we should think of advocates as being as necessary in court as interpreters for people who wouldn’t be able to participate without their help:

Two young parents with learning difficulties in Birmingham were deemed to lack capacity to care for their baby, and an interim care order was made…. Read more here.

Becky has also been  to meet some of our members in Milton Keynes. She’s inspired by their  support for each other:

Karen, Shared Lives officer, and I visited Tim, someone who uses Shared Lives care, for a spot check, to make sure that he is happy visiting his Shared Lives short breaks carer…. Read more 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!

Accelerating Ideas – working across the home nations

In this second blog of two about our , Alex Fox (CEO) and Anna McEwen (Executive Director of Support and Development) set out some of the lessons from Shared Lives Plus’ Accelerating Ideas UK development project, supported by Nesta and funded by the National Lottery Community Fund to develop Shared Lives and Homeshare across all four home nations.

There has been Shared Lives in all four home nations for many years, but our capacity to support the sector outside of England was limited, and a large majority of the 14,000 people using Shared Lives live in England. Welsh Government support has enabled us to address that gap in Wales for some years now, and Wales has full coverage and has started to grow in recent years. The Accelerating Ideas programme enabled us to bring our work to Scotland and Northern Ireland for the first time.

Over the past three years, Shared Lives in Scotland has grown healthily, rising to around 17%. Much has hinged on one or two ambitious and successful areas showing the potential. Moray’s Integrated Joint Board recently approved the transfer of 4- 8% of the learning disability budget into Shared Lives, because they had seen the success of the model for themselves as a day support. Now Edinburgh, Fife, and Falkirk are growing. East Lothian has plans to reach more older and young people in transition from care. Three new schemes are being established, two focused initially on people with learning disabilities and Dundee set up to support older people.

Conversely, where an area has no existing Shared Lives scheme, and leaders have no direct experience of it, winning hearts and minds takes significant work and success often requires a number of leaders to align at the same moment: in one area we spent years working with people supporting carers, disability champions, the Health board and potential providers of the new service to co-design it. Re-structuring left only two of five relevant senior leaders in post, so that process had to start again and is only gaining momentum again a year later.

In Northern Ireland, the sector had remained very small for years, with awareness low, little senior leadership attention, recruitment difficult and mixed views on development and diversification to reach new groups. Ironically, it was following the collapse of the Northern Ireland assembly, which put many areas of public service reform on hold along with the cross-party support for Shared Lives which we had worked so hard on, that a Shared Lives expansion project led by the Health & Social Care Board was established in July 2018 with £270,000 of non-recurrent funding, with funding made available to all five NI Health & Social Care Trusts for Shared Lives posts. The challenge now is to convert that investment into capacity, recruitment and impact on people’s lives.

A clear lesson from our experiences of working in all four nations is that each nation has to own its own development programme, based around senior staff who are embedded into the national policymaking and practice community. When resources are very limited, we have in the past prioritised direct support for local organisations. That has welcome impact on the ground, but that member-facing work doesn’t necessarily raise the sector’s profile and political support, or lead to longer-term investment. The approach of investing in strategic posts who can build profile, support and evidence feels like the only route towards lasting growth, as the new resources we have attracted in Northern Ireland and Scotland suggests. After years of almost all the growth being concentrated in England, we are now seeing growth which is genuinely UK-wide, with each nation able to learn from the others, as you can see from this story from Moray Shared Lives, which has pioneered dementia support.