The power of companionship

My colleagues Debs, Alice and Ben who support the UK’s Homeshare organisations and the Homeshare International movement have shared this update on their work during the pandemic:

As the Covid-19 pandemic continues to influence every aspect our lives, we are proud that Homeshare is still open for business. Across our network, organisations are continuing to match people keen for supportive shared living, and Homeshare matches are showing the power of companionship as a means to not only survive the pandemic and the measures designed to tackle it, but get through it with humour, style and hope. As Sylvia, Householder in London remarked:

Neither of us could have predicted that home-sharing would turn out this way. But it really has helped us both so much through lockdown. Olivia is a great companion, so kind, helpful and full of life. She’s just a lovely flatmate…She’s taught me to use Zoom and FaceTime so I’m able to keep in touch with my children, grandchildren and great grandchildren. But nothing beats having someone with you.”

As we reflect on the tremendous difficulties faced in some areas of the residential care sector, it is a source of great relief that incidences of infection and deaths from Covid-19 have been mercifully low in Homeshare. Our model is 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 at the moment – especially if you share that home with someone who’s looking out for you.

We are acutely aware of the relative greater danger posed by the virus to older people. We’ve always known that entering a new living arrangement with someone is a big commitment, which is why robust matching, safeguarding, and follow-up support procedures have always been the bedrock of the Homeshare process. Our network have further adapted and specialised these processes to bring risk of infection for both householders and Homesharers down to an absolute minimum.

‘Sarah Kaye, Director and Coordinator at Homeshare Living CIC, said: “Homesharers have become a lifeline to many older and vulnerable people during the coronavirus outbreak and we are working to support existing households and continuing to make new matches in the safest way that we can. Digital technology, social distancing and following all hygiene guidance has helped us to make this possible. Homeshare has truly never been more important.”’

While the death toll from the virus continues to rise, we are mindful too of the profound danger posed by a different type of pandemic – that of loneliness and isolation. The world is slowly waking up to just how deadly loneliness can be – it increases the likelihood of mortality by 26% – and during the lockdown the potential for isolated people to lose what little social connection they did have is great. Matching an older person with someone willing to share home life and provide some support is an empowering step against this danger.

Therefore we’re determined to keep supporting our network to facilitate life-changing Homeshare matches, between fully-informed adults who have decided they want to live together. Culture Secretary Oliver Dowden recently said that “Coronavirus and social distancing has forced all of us to look loneliness in the eye. So recognising the signs and tackling the stigma has never been more important.”  Homeshare has always been about understanding that everyone, no matter their age, has particular needs and unique strengths, and that by bringing people together we can solve problems and make people happier. The need for Homeshare now is more urgent than ever

You can read guidance from Homeshare UK  on adapting practice to support new and exisiting Homesahre matches here

Find your local Homeshare Provider here

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Thanks for all the positive comments on my Shared Lives Plus newsletter here and below.

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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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Full newsletter here.

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.

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.

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.

Invaluable

We have been campaigning with our members to persuade the Treasury to adjust their Self-employed income support scheme (SEISS) scheme, which replaces lost profits for self-employed people losing work during COVID-19, for Shared Lives carers, who can apply to the scheme, but typically aren’t eligible for any replacement income, because the Shared Lives tax break usually shows their profits as zero. This has left Shared Lives carers feeling unvalued and contemplating leaving the sector, just at a moment when we desperately need to sustain and expand home-based alternatives to hospital and care homes.

So we are utterly disappointed that the SEISS has not been adjusted by the Treasury to address this, despite our very positive engagement with the Dept of Health and Social Care, and the support expressed for the Shared Lives sector by the Minister of Care Helen Whateley and cross-party MPs, including the Shadow Health team and Labour party leader Sir Keir Starmer. We have been contacted by MPs of all parties as a result of the campaigning which Shared Lives carers have been doing on this issue locally.

In parallel to our national lobbying, we have been working with councils to encourage them to use their social care continuity funding to help Shared Lives carers who have lost income, and also the even larger numbers who are providing more support than ever to someone who lives with them, and cannot at present access day support services. We have many examples of councils doing this and we are talking with the Dept Health and Social Care, and the Local Government Association about how to help more areas to follow suit.

Money can be a touchy subject for Shared Lives carers. There are still areas where people have been caring without a pay rise for years: pre-COVID we were working on this with members, asking councils to sign up to a pledge to give Shared Lives carers the same pay increases as other social care workers. I’m struck by the attitude of one or two areas who seem to feel that because Shared Lives carers give so much of their lives, and don’t expect to be paid for every hour spent with someone, that they shouldn’t really care about money. Some of our members said recently that they feel treated with suspicion if they raise the subject.

The truth is that we all need to live. The fact that our members are often staggeringly generous shouldn’t be a reason to take them for granted, as one area did when they wrote a Shared Lives carer in her 70s to say that with day services closed, the person she cares for would be home with her all day now, and they expected her to provide this extra full time job of care on a ‘voluntary’ unpaid basis.

Shared Lives works so well because it allows people to separate the money that they are paid for the formal part of their role, from their relationship with an individual who many describe as ‘just one of the family’. Nobody goes into Shared Lives for the money. Let’s make sure during this crisis that money is not the reason that anyone has to leave the caring role they love.

Lost and found

Here is an extract from my new blog for the Royal Society of Arts here

In the social care sector, we are currently all too aware of what we don’t have.

We still lack adequate protective clothing for workers doing the most important jobs.

We still lack people in key roles – like the social care workers who until a few weeks ago were ‘unskilled’, but are now the heroes we applaud from our doorsteps each week.

We still lack virus tests, which means we lack the knowledge we need to keep people safe. Individually, many of us lack money because people are losing paid work. We lack social contact, freedom, green spaces, hugs. (and pasta.)

The things we lack are causing hardship and hopelessness. We are also finding some things we didn’t realise we had.

We have new friendships, and support where we weren’t expecting it, as thousands of grassroots mutual aid groups have sprung up.

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 we lack, let alone the people we have lost.

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 weeks (and years) will be, we must make everything we can of what we’ve found, and what people have offered to give.

This moment of people stepping forward and reaching out to each other will pass very quickly. Without action, it could be replaced by something much bleaker in the hard years to come.

The story of the next few weeks will, I believe, be of the NHS doing better than feared.

But the challenges within social care will be brutally exposed. Particularly where three problems are found together: lack of money, lack of central planning or strategy, and buildings which house too many people in close contact.

We will rebuild our social care services after this. But surely we cannot want to reconstruct the broken systems which contributed to us being here?

I believe that building better systems should be based on three closely linked principles:

  • A renewed drive towards living at home, or a place which feels like home
  • Formal support combined with community connection
  • Care organisations controlled and run at the neighbourhood level

For more on how these will work together, read the full blog: https://www.thersa.org/discover/publications-and-articles/rsa-blogs/2020/04/social-care-reform

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.

Whatever it takes

The original assumptions in planning for COVID-19 in the UK were that a very large number of people would get it. It was known at that time that it was deadly for many older and disabled people. Presumably the plan was to keep older and disabled people, particularly hundreds of thousands of older people who receive social care, safe from infection. That could only ever have been done through a massive programme of safety equipment (PPE) and testing. That we are still playing catch-up on PPE and only a tiny number of the people who care for older and disabled people have been tested, gives the impression that as a nation we have abandoned a whole section of society to this illness. Nearly 1,000 people a day are dying in hospital, but we don’t even know how many are dying in care homes – don’t they count?

The government has, quite rightly, said it will do ‘whatever it takes’ to keep the NHS going through COVID-19. This isn’t just a message from Health ministers but from the Chancellor and the PM. We have not yet heard ‘whatever it takes’ to keep social care going. Put another way, we need the government to say, from the top down, ‘We will do whatever it takes to keep older and disabled people alive’.

Compassion fatigue

This is a guest blog by my colleague Ali Miller who leads on our work developing supportive shared living for survivors of domestic abuse and modern slavery. It originally appeared here.

Looking ahead to the Easter bank holiday weekend might not feel like such a luxury this year. Many people in the Shared Lives community are facing additional pressures and having to rise to challenges they never expected to face. So how do we suddenly adapt and take on these new challenges?

We all know where we’re at with our weekly routines and this is the same for people accessing Shared Lives. Whether that’s attending day services, getting together with friends, hitting the gym or volunteering, having to give up the things that we love is hard. Naturally, it can be even harder for people who really depend on these routines, or who may not fully understand why they’re missing out.

It’s a big challenge for people living in Shared Lives and the Shared Lives carers who support them. For carers, trying to help meet the unmet needs of people you care about can feel relentless when life is so restricted. As much as you feel someone’s frustrations and understand their emotional struggles, even the most empathetic person can develop compassion fatigue.

Compassion fatigue happens when someone becomes so drained and exhausted by the behaviours and needs of the people they support that there are real physiological changes in the brain. This impacts people’s ability to connect and empathise with the people they support in the same way. Experiencing compassion fatigue can cause tension and guilt but it is a normal human response to supporting people in crisis and distress.

Shared Lives carers shape their lives around connecting with people and supporting them to live fulfilling lives, so feeling stuck or helpless can feel like you’re not getting it right. A common response from professionals is to bombard carers with strategies and whilst these can provide solutions when the time is right, for anyone experiencing compassion fatigue it’s unlikely that strategies will be heard or taken up.

It’s easy if you’re used to caring for others to overlook your own needs. The same traits that make people great Shared Lives carers- empathy, compassion and genuine care, can turn into compassion fatigue unless self-care is prioritised. In fact, the antidote to compassion fatigue is self-care.

There’s no doubt that self-care seems even harder to make space for when lives are being turned upside-down, but it is vital. Giving your body and mind a mini-break ultimately helps everyone; it’s not selfish or indulgent, it’s a necessity.  Here are our three top tips for self-care

  1. Let go of perfectionism.

Remember that struggle is normal. If someone living with you is struggling, it’s not always fixable. You can be helpful, supportive and look for strategies, but you can’t always ‘make it all better’ and that’s ok. Just by being there, listening, and reminding someone that you care is helpful in itself. If you’re doing your best, you are doing great.

  1. Take time for yourself.

Self-care comes in many forms and it’s important to meet your needs. So, you can’t get to a yoga class or meet your friends down the pub, but how about having a bath, phoning a friend, cooking a nutritious meal or getting an early night- remind yourself that prioritising your needs helps everyone.

  1. Make mindful moments

We can get consumed by stressful moments, especially when our resilience is running low. If you find yourself in a tense moment, focus on something distant like the branch of a tree bobbing about outside your window, let it take you out of the moment. If you struggle with being mindful in the moment, but you’ve dealt with something stressful, take your phone to the bathroom and listen to a five-minute meditation.

Above all remember that you are important and worthy of self-care. So, this Easter weekend try to give yourself permission to check in with your own needs. If you find yourself asking for help, doing a YouTube Zumba class, or having a lie-in, congratulate yourself on meeting your needs and being kind to yourself because that is what success looks like right now.

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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.