500 more people are living Shared Lives

We are mid way through Shared Lives week and like everything, this year it’s very different. No corner of our lives or our country is untouched by this crisis, and Shared Lives carers, who already give so much to their communities, are now relied upon more than ever. It has been humbling to see our members carry on sharing their lives and providing care for those they support in the face of tremendous challenges.

We’ve been working hard to support our carers and schemes with issues surrounding PPE, pay, working longer hours, access to supermarkets and generally working through the crisis.  We’ve set up a new telephone support service with the British Institute of Learning Disabilities, to help carers respond proactively to anxiety or disrupted routines faced by the people they support, sustaining them through the most difficult of times. We are disappointed that despite accepting our case that it’s scheme to replace lost income would not benefit most of them, the Treasury isn’t able to support self-employed Shared Lives carers who normally offer day support or short breaks support which isn’t happening during lockdown.

But through it all, Shared Lives carers and the people they support are finding ways to overcome problems together – not only surviving, but doing it with humour and style. Whether it’s discovering a new talent for painting like Ivor and Peter in Shared Lives south west, making onion chutney (with all the tears that entails) like Judy, Jo and Mandy in Shared Lives Hertfordshire or Jon Thomas in South East Wales keeping active and enjoying the sunshine,  seeing the different ways in which Shared Lives matches are beating the boredom and frustration of lockdown makes me smile every time. Homesharers too have been showing how companionship is helping them through the pandemic – like Norman who: “grinned and didn’t have to bear it!”

While some areas of the care sector have struggled desperately, it is a source of great relief that incidences of infection and deaths from Covid-19 have been mercifully low in Shared Lives and Homeshare. Both models are based on the security of a welcoming home environment and good relationships, and it is increasingly looking as though home is one of the safest places to be – especially if you share that home with someone who cares about you and who’s always got your back.

The latest figures from England’s Shared Lives schemes show that Shared Lives care continues to grow steadily despite sustained austerity and a lack of a cohesive strategy for social care. The total number of people supported in Shared Lives in England grew by 540, or 4.4%, to a total of 12,890 (in England).

The numbers of short break arrangements grew by a promising 8%, suggesting that planners are increasingly understanding the flexibility of Shared Lives and its ability to fit in with and support wider service provision. While the numbers of people supported for dementia remained static, those in Shared Lives arrangements with other needs associated with older age doubled to 720. This shows that Shared Lives care can expand swiftly to tackle specific challenges – with the serious pressures facing the residential care sector, the growing numbers of older people supported in Shared Lives are a timely boost. There are now 500 people supported for a physical impairment – a 14% increase, which is positive news in the context of our concerted work in partnership with NHS England to develop shared living for those with health needs.

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Rebuilding communities and rebuilding social care are deeply linked challenges

This article appeared on the Social Care Institute for Excellence website on 25 May here. (I’m a SCIE Trustee.)

The focus of the first weeks of the crisis was on sustaining hospitals. It was a difficult, complex but clear challenge and it was met. As it became clearer that the virus had swiftly found social care’s most vulnerable services and was sweeping through people living in care homes in particular, politicians and planners have tried to bring into focus the much more fractured picture of social care services, which range from large nursing homes, through community support services and homecare, to individuals organising their own teams of Personal Assistants. We found out what we were good at: building huge hospitals in a matter of days is an incredible achievement. And what we are not good at: identifying where deeply entrenched inequalities in our communities will meet inequalities in our public services and create human tragedies.

• SCIE: COVID-19 advice for social care
• Alex’s COVID-19 blog for SCIE: Sharing lives and self-isolating
• Other opinion articles in this series

There was a widely-shared photograph of the head doctor at the London Nightingale Hospital waiting for his first patient at a lighted door in a vast metal shutter. It’s a heroic image. Of course, the Nightingales, fortunately, remained almost unused as the daunting acute care challenge was largely met. There are few images of the thousands of people who died unnoticed in care homes, much less those isolated at home who were visited by untested and poorly equipped social care workers. It is hard to take a picture of the vast number of small, spontaneous acts of kindness that have happened within Mutual Aid and other grassroots community groups, and we may never know their contribution to keeping people alive and hopeful.

There is already talk of big, structural change post COVID-19. It will be tempting to do what we were good at during the peak of the crisis, but what we need in the next phase and beyond is unlikely to revolve around easily-defined service delivery challenges which can be achieved by a small group of heroes.

Support people need in the place where they live

As much as we will need our hospitals and medical facilities to recover and thrive, we will need a wider support system that enables people to live safely and well at home. That is where the safety and wellbeing of older and disabled people has always been found, and the current crisis has just brought home how important it is for people to be able to get the support they need – formal and informal – in the place where they live. For many people facing an extended period of isolation and the risks that will bring to their mental health, the role of friends, neighbours and – socially distanced – family will feel increasingly important.

The virus has brutally exposed many of the weaknesses in our social care system. But it has also highlighted an abundance of caring within our communities. We have a stronger desire to help each other than we realised: three quarters of a million people volunteered to help the NHS and social care before the programme had to be paused while the system tried to catch up. We have more creativity than we knew: people and organisations finding a million ways to offer their help, knowledge or skills to others, often for free. What we’ve found does not, of course, begin to balance out the devastating impact of the things our services lack, let alone the people we have lost.

Both formal and informal needed

And those good things are no more evenly distributed than the deaths and the shortages, exacerbating already deep-rooted inequalities. But given how difficult the coming months (and years) will be, we must make everything we can of what we’ve found, and what people have offered to give.

Social care is rooted in an attempt to bring together the formal and the informal: the social as well as the care. We know that people will not live safely and well where one or both are absent, or cannot work together: the large impersonal institution where there is support but community is kept at arm’s length; the isolated home where an individual endures hours without human contact.

So, we need a renewed drive towards living at home, or where that is not possible, a place which feels small and personal enough to feel like home. We can no longer tolerate people of any age living long-term in big, impersonal institutions. We must see the connections which people are making with each other, in all of their humanity, diversity and messiness, as being as crucial to the next phase as the smoothly-running hospital was to the first. And if we are to see people stepping forward to connect with people who use or live in support services, they will need to be able to feel a shared sense of ownership of those services: community as a mode of ownership, not just community as a ‘setting’. Put bluntly, few people want to volunteer for a large profit-making business owned somewhere offshore. If we want people to continue to step up, connect and be generous, they must be offered a greater sense of ownership and real relationships in return.

Look to the community

Neighbourhood level care organisations have already shown they can reach tens of thousands, like the famous Dutch Buurtzorg dementia support service with its self-managing community teams, or Shared Lives which reaches 14,000 disabled and older people through a family-based support model which behaves like a franchise in every way except for the fact that no one owns it, nor profits from it. We have seen these community-rooted organisations proving adaptable in the face of COVID-19, using online technology to create and sustain connections which are traditionally carried out face-to-face. The Shared Lives sector is seeking investment in an unprecedented modernisation of its recruitment and matching processes to ensure they can carry on during lockdown, and that the home-based support model can be a much bigger part of a pandemic-proof and sustainable future.

• News feature on Buurtzorg, the Dutch model of neighbourhood care

The crisis is still peaking and the bleakest news from the social care sector is yet to come out, as we start to understand the scale of what has happened, but not yet been counted. Many smaller provider organisations are already staring at bankruptcy. But we cannot wait until the crisis has passed to start building the future. We must start now.

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 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.