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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.

If you want to keep up to date with occasional emails from me about our work, with lots of good news stories, please subscribe to my newsletter.

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.

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.

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.

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.