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

Rainbow

I’m so excited to see the ‘rainbow’ of community approaches launched on the Think Local Act Personal website. Social care is often talked about as being at the heart of the perfect storm, so I love the fact that our colleagues at Nesta came up with a rainbow to give this snapshot of some of the many inspiring asset-based approaches which are transforming people’s ideas about care, support, inclusion and community development. It shows that these community models stretch across the public service system from prevention and whole-community work, so work at the acute or crisis end. The online directory which sits behind it aims to include scores more models to help commissioners and others find their way through this new world.

Here’s my blog marking its launch:

How do you make big changes to how people are supported, when the kinds of support which work best are nearly always those which feel small and personal? TLAP’s new resource – examples of innovative models of community-centred support – aims to show how to do things differently.

James lived in an epilepsy centre for twenty years, where his medical and support needs were labelled ‘complex’. But his goals were simple: friends and a job. He was able to pursue them in the small, homely setting of Andy’s household, when Andy became James’ Shared Lives carer. James moved in and lived as part of a busy household, before moving around the corner into his own place, with close ties to the household when he needs them.

St Joseph’s hospice noticed that there was a gap in the support for families, which was not easily filled by traditional volunteering. When someone approaches the end of life, it can be an isolating experience for a family. Some friends and neighbours withdraw, or worry about ‘intruding’. Agnes said, “I have friends but no-one turns up to see me, why? I needed to go back to the hospital because … if I was in hospital then people would come to visit me.” Agnes was matched with Lucia through the Compassionate Neighbours programme, which enables people to take on a more personal, open-ended role. Lucia says now she and Agnes are “more like family”.

The changes which Shared Lives carers, or Compassionate Neighbours, achieve in people’s lives are huge for the individual, impacting on their whole life. The challenge for ‘asset-based’ models like these is reaching more people, attracting investment and referrals in public service systems that are designed to make much more specific interventions across very large populations. Large parts of the NHS, for instance, are organised around treating a particular medical condition across populations of hundreds of thousands of people. The senior leaders who control vast council and NHS budgets are expected to be strategic, avoiding getting ‘bogged down’ in detail and taking a ‘helicopter view’. From a helicopter, people’s lives can look very small and insignificant.

Read on here

Big worries and small acts of kindness

Our message on the EU referendum to Shared Lives Plus members and anyone else changing the world one small step at a time:

The changes which are happening around us can feel huge and abstract, but the anxiety they can cause can be very real. The saddest thing I’ve heard this morning, is parents who are immigrants to this country, going to their child’s head teacher, to ask if their son or daughter is still allowed to attend their local school now. The most inspiring was this message from the CEO of South West Yorkshire Partnership NHS Trust: “To all my staff from the EU – you are as much a part of our team today as you were yesterday, valued & cherished in the NHS.”

We didn’t comment on the EU referendum and I’m sure our members’ views on it were just as divided as the country’s. One of the most disappointing aspects of the various kinds of political debates happening in recent months is that finger pointing and disagreement felt as if it was fast becoming anger and worse. In fact, we all voted knowing that little was certain either way, and doing what we hoped was best.

Perhaps we can do little to influence the huge political changes which are set in train both in this country and in Europe, which are too often driven by forces and ambitions which have little to do with our day to day lives. But life goes on and it is at the human level of day to day living which we can and do make a difference.

So we will do what we always do: walk alongside our members to support them and cheer them on as they share their homes and lives, carrying out the small, life-changing acts of kindness and togetherness which make this such an amazing movement and which help to build communities and a country in which we all belong.

In the coming months, we will be particularly keen to hear from members who face worries or challenges arising from any of the changes yet to happen and we will do everything we can to support you and help you to have your voices heard. In the meantime, thank you to everyone involved in Shared Lives and Homeshare for all that you do to make the UK a friendlier, happier and more inclusive place to live

The Shared Lives Plus team.

How many social care workers does it take to change a lightbulb?

I spoke at GovToday’s Social Care conference yesterday on ‘rethinking personalisation.’ My argument you won’t be surprised to hear was not that we should re-think whether personalisation is a good idea, but that we still have more to do in really understanding what good care and support as part of living a good life really looks like. I started by suggesting that when I talk to policy makers and when I talk to people who use services and front line workers it can seem like there are two different worlds. In one world, anything is possible. We can make savings whilst tailoring support to what people want and helping people find good lives. The other world feels at times like it’s full of cuts, gaps, unmet need and failures in even basic care and safety. You could say that just shows how out of touch with reality the people dreaming of personalisation are, but you can find real people living real lives in both worlds.

I believe that a lot of the people living in the world full of possibility and who have found many of the resources they need, get to live in that better world not because they live in an area where there is endless public money (not sure where that would be these days), but because they have found other kinds of resources, including being supported to find and build their own resourcefulness. Often when people are able to live lives which feel whole and not fractured, another pair of very different realms – the realm of services and the realm of families and friendships – have found a way of complementing each other, rather than ignoring or fighting against each other.

The Joint Committee which looked at the draft Care and Support Bill reports next Tuesday. I’m hopeful that it will recommend that the Bill does more to create that alignment between paid and unpaid, formal and informal. If it does, I think that the Bill and last year’s White Paper could be seen in future years as a turning point for social care, and perhaps for attitudes to public services more generally. This won’t be about cutting existing services and hoping for the best. But it will be about a system which Continue reading

Have we become a neglectful society?

Norman Lamb, the Care Minister, gave an interesting interview in the Telegraph over the Christmas period, which was given the rather unfortunate headline, “Neglectful Britons blamed for forcing elderly into care homes”. This picked up on the Minister’s view that we have become a “neglectful society” and that we need to rebuild “neighbourly resilience”, without which, he was quoted as saying, pensioners lead dismal, lonely lives.

Mr Lamb was given a hard time for this by Sarah Ditum, writing in the Guardian, who said that “The government has some cheek to say we’re not caring enough” and pointed out that more unpaid family carers are caring for more hours per week than ever; a huge contribution which Ditum argues the coalition is undermining with cuts to public services.

Ditum is right that, as social care services are being ever more tightly rationed, whilst the impact upon the NHS is starting to show, the impact upon family carers is often hidden, yet very real.

However, I don’t read the Minister’s comments as being about unpaid family caring. His suggestion that we have become a “neglectful society” is strikingly reminiscent of John McKnight’s suggestion, that we (in his case, the ‘we’ being US citizens in the 1990s) have become “a careless society”, in his book of the same name. McKnight was one of the founders of ‘Asset Based Community Development’, an idea which Lamb’s predecessor, Paul Burstow, talked about approvingly in the run-up to launching the social care White Paper. ‘Asset-based’ or ‘strength-based’ approaches start with the premise that seeing only people’s needs and vulnerabilities (their ‘deficits’) will lead to services being designed to impose outside ‘expertise’ at the expense of individual, family and community resilience. In other words, poorly designed, if well-intentioned, social services can become part of the problem, ‘colonising’ communities and ordinary human relationships and leaving citizens who have, in McKnight’s words, “grown doubtful of their common capacity to care”.

So McKnight was not arguing that people had stopped caring about each other, but that they had stopped seeing the active support of those around them as their role, instead believing that only the state was qualified to provide support. It’s a powerful – and by virtue of its power, a dangerous –  argument, but one which needs serious consideration.

A small-state fanatic could see it as an excuse to cut services in the naïve belief that people will start supporting each other as soon as the state ‘gets out of the way’. McKnight was instead arguing for services which were more led by people and which worked alongside and supported their relationships, rather than supplanting them. You only have to look at the isolation of thousands of older people or the disempowerment of many people with learning disabilities living in ‘service settings’, to realise that even well-funded traditional services cannot address isolation, in all its many forms.

I met Mr Lamb a number of times in the Autumn, including to discuss asset Continue reading

Twenty years on: naturally radical

It’s Shared Lives week this week, with local events at 152 Shared Lives schemes across the country to celebrate the incredible achievements of Shared Lives carers and the people who live with or visit them in their family homes. The week started with our sold-out England conference and 20th Birthday celebrations, which led me to reflect upon the history of Shared Lives.

We can trace the idea of sharing home and family life with people who need support at least as far back as 14th Century Gheel in Belgium, when the town, which had become a place of pilgrimage for people with mental health problems, instead of building a large asylum outside of the city walls, decided to organise itself into a boarding out scheme which still survives today. Yet despite that 700 year history, this year, Shared Lives Plus was named as one of ‘Britain’s New Radicals’ by the Observer.

So we can’t claim that sharing your home and family life with someone who needs support is a new idea, but is it radical? I argued at our conference that Shared Lives carers are indeed radical. We are, I think, increasingly compartmentalised and isolated, as we try to manage the pressure of busier and busier lives and in many cases more demanding workloads. My partner and I find ourselves booking time with friends months in advance. My natural inclination is to have large walls between my work life, when I’m often away from home, my family life, and my ‘me time’ which usually involves reading or watching TV on my own when the rest of the family is in bed. People are often suprised to hear that there are about 8,000 Shared Lives carers in the UK, who have been radical enough to make caring for others not their job, but their lifestyle.

I think most Shared Lives carers would reject the notion that they are radical. He or she “is just one of the family” is something I hear very often. Sue Newton, our President, who was instrumental in founding our organisation and the sector in Liverpool in the late 80s/ early 90s, agrees and suggested at the conference that sharing your life is, in fact, the most natural of ideas.

So why does it seem so radical to so many people? This is partly because of the way that social care has developed. It has become Continue reading

Blossoming Forth in Middlesborough

Writing this on my way home from an event in Middlesborough run by our colleagues at Community Catalysts, which brought together people running, supporting or just generally interested in micro-enterprises. (There will be similar events in Sheffield and Bristol).

We heard from Chaz and Joanne, two parents who have set up Blossom Forth, a micro-enterprise which helps meet families’ specialist childcare needs, whilst also creating employment opportunities for parents who themselves have disabled children. Joanne explained that parents of disabled children often struggle to find childcare which can meet their child’s needs and are wary of relying on childminders who have no experience of disabilities or specific training. Blossom Forth teamed up with Tyneside Met College to provide a group of parents with training on everything from confidence, to disability awareness and time management. Some of the parents lacked confidence: as Chaz put it, “I felt very isolated and although I’d left school with 12 GCSEs and four A Levels, my goals took a back burner when I had kids and I didn’t trust other people to look after my eldest son who has additional needs. The course showed me that I can be more than only a parent.” Chaz is training to be able to provide childcare to disabled children, which will be her route back into employment but will also help her to support parents who are struggling with many of the challenges of which she has personal experience. Joanne and her colleagues have high hopes for Blossom Forth and bags of the faith and energy which all successful entrepreneurs need: “We didn’t have any start-up money or people with the right qualifications. Community Catalysts found us a solution which was to run initially as a service introducing parents to childminders and to do some market testing. I’ve no doubt that we will become a successful enterprise.”