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

Hero, villain, angel, machine

The other week I broke a bicep tendon, which I wouldn’t recommend. I posted this twitter thread with some reflections about using the NHS.

I had quite a few responses, so I’m reposting it as a blog here:

As an NHS Assembly member I thought I should road-test the NHS. So last weekend I snapped my bicep tendon while rock climbing training. Ouch. Here are some reflections.

Firstly, this was a self-inflicted sports injury, but can only be fixed by surgery. That the risks we choose to take (exercise, lack of it, etc) are covered, free-at-point-of-use seems miraculous at times like this.

A&E on a Sunday at Leeds LGI hospital. A wait of course, but in under 4 hours, I was assessed, x-rayed, seen by a specialist, booked me in for next week, by busy, effective, kind people.

I was phoned on the Sun and Mon to book and confirm a Tuesday appointment. The surgeon and his team there were friendly & clear. Options & risks explained. Surgery booked for Sun.

One of the great things about our NHS is the sense of equality. The surgical ward’s patients were a cross-section of Leeds. An unconscious homeless man brought in by 2 police. An older lady keen to chat. A young man having to wait ‘too long’ left in a huff (or maybe in fear?)

An unconscious homeless man was brought in by two police officers. An older lady fretted about getting home. A young man left in a huff when told how long his surgery would be.

Being trolley-ed half-dressed to theatre, scalpels & general anaesthetic feels like being wheeled away from the land of the living. Porters have a degree in cheerfulness which helps a lot.

I met the surgeon just before being anaesthetised. Ideally, I’d have had some significant last minute risk info earlier. He did what seems to be a great job of the op.

Waking up. I burble at the endlessly patient nurse & spill my water. Back to the ward. More kindness + a chemically-enhanced sense of wellbeing. I love the NHS!

This album on my phone seems to have lasted a month.

All morning on the ward TV politicians shouted about Brexit, immigration & NHS crisis. While the multi-cultural, multi-national team were busy, effective, cheerful & kind to us all.

I hear a passionate discussion about an issue to do with unnecessary waiting, and what the team planned to do to fix it. A strong sense of us patients as people with lives outside of this ward.

I think about someone I know in a mental health crisis & my experience of those services: overwhelmed with demand. Long-term care lost behind waiting lists & ‘life-or-death’ criteria.

With my ‘self-inflicted’ injury fixed, I thought about my colleague Meg who talks about being treated for self-harm injuries with less compassion: results of a mental illness seen as ‘self-inflicted’

Is the balance right between the impressive resources here & those available to people with life-long conditions? This team is under pressure, but imagine social care resourced like this…

Later I read this harrowing BBC report into Mark Stuart’s death: autistic & fatally lost in a hospital’s care system. His parents said, “It was like he didn’t matter”.

The NHS is a miracle which has not yet reached all those who need long-term care. It is easy to simplify the NHS to hero, villain, angel, or machine, based on our latest experience.

The NHS needs us not to worship it, or despair at its faults, but to see it clearly, value it and question it. The staff here were at their best when they listened, explained, empathised.

In some places, that culture of kindness and professionalism will break if we take the NHS for granted. We need to invest in it. & we need to listen to those who don’t yet experience it.

The bill for all this was of course, nothing: just paying my taxes. I dread to think how much my care has cost the NHS, or how much private paying health care systems would charge.

Finally, huge thanks to everyone at the Leeds General Infirmary – you are doing an amazing job in tough circumstances and I couldn’t be more grateful.

Human rights abuses of people with learning disabilities

The Joint Committee on Human Rights (JCHR) published their report on the detention of young  people with learning disabilities and/or autism in mental health hospitals and so called Assessment and Treatment Units. The committee of parliamentarians ‘”condemns the “horrific reality” of conditions and treatment under which many young people with learning disabilities and autism are detained in mental health hospitals, “inflicting terrible suffering on those detained and causing anguish to their distraught families”.’

The government’s inspectors CQC come in for criticism for not consistently enough spotting human rights abuses where they are happening and the committee recommends more surprise inspections out of office hours and even covert surveillance. While CQC clearly made and continues to make mistakes, any public service which relies on covert and surprise inspections to keep people safe is fundamentally broken: the inspectors, even with more than their currently limited resources, will never catch every abuse, if the model is itself abusive. CQC itself says, ‘Services where people stay for months or years, where people are located away from their communities, where there is weak management and where staff do not have access to the right training and support, are more at risk of developing cultures where abuse and human rights breaches take place.’

Our thematic review on restraint, segregation and seclusion’s interim report came out in May 2019. The review has further emphasised the poor environment, high numbers of staff without support or training, and punitive cultures that can develop in these services.

The committee gets tantalising close to recognising this, recommending new legal duties on NHS Clinical Commission Groups and local authorities to ensure the right services are available in the community and making it harder to use the Mental Health Act to detain people with learning disabilities. The most important insight is the ‘the “grim”, predictable pathway to inappropriate detention in these potentially “brutal” circumstances’, from early family concerns around the behaviour of a son or daughter as they reach puberty. The family tries to advocate and fight for support. They remain the source of nearly all care, but are excluded from professionals’ meetings. ‘The child is taken away from their home and the familiarity and routine so essential to them, often many miles away and placed with strangers. Desperately concerned parents are treated as hostile and as a problem.’ This state-inflicted trauma leads to an emergency response, which gradually becomes open-ended ‘physical restraint and solitary confinement.’

Meanwhile, NHS England announced the extension of personal health budgets, already used by 70,000 to take control of their care package, to more people with mental health problems. As I’ve argued here before, personal health budgets, combined with significant investment in voluntary sector advocacy and planning organisations, and in not-for-profit community support organisations, offer a solution to the horrors contained in the JCHR report.

Everyone who has a learning disability, who is admitted into long-term NHS care, must be offered a personal health budget and an independent advocate to help them or their family to find and use community support to help them get out of hospital.

The rules which place decision-making power in the hands of a small group of clinicians must be changed, so that a designated decision-making circle of support, including the people who know the individual best, collectively share responsibility for protecting the individual’s human rights and maximising their life chances.

And every family whose support for their son or daughter is considered at risk of breaking down, must be offered a personal health budget of at least the equivalent value to the cost of the public service alternative, and support to spend it on support which can sustain family life, or provide a community-based alternative.

We could make these changes today.

The right help, in the right place, at the right time.

I was talking the other day with a colleague from another voluntary organisation, which, like us, provides support that improves people’s health and wellbeing, and keeps them out of hospital. They were trying to negotiate funding for what they did with a hard-pressed NHS body.

The challenge from potential commissioners was one with which people working in Shared Lives and Homeshare, and other community-based services, will be familiar: “You may be able to demonstrate what you do is good for people’s health and wellbeing, but in the current climate, how could we invest in it if it can’t demonstrate reduction in hospital bed days?”

One of my continuing frustrations is that, in return for investments which are a tiny fraction of local or national budgets, we demand from community-based support and preventative interventions a higher level of evidence than we demand of much more expensive formal state services. There are, for instance, large parts of the NHS, sucking up billions every year, which cannot demonstrate they reduce bed days: they are seen as having intrinsic value. And they do, but the value placed on a part of the health and care system should rest solely on the health and well-being outcomes it achieves, not on how well-established it is as part of the public service furniture,

Every recent health and care strategy talks about the value of community and voluntary services. Much of that value lies in their distance from hospitals and crisis services: not just in the sense that they reach people in their own homes, but also in that they can often act early, rather than close to the point of crisis; and they are culturally far removed from the medical world. If those interventions are valuable because they are far away from hospitals in time, distance, and approach, it makes no sense to demand, above all else, that they demonstrate their direct impact on those hospitals: if they are genuinely community-embedded, they will always fail that test.

This isn’t to say that we should not ask community providers to demonstrate the evidence of their impact. We have worked with Kent University and the Shared Lives sector to develop an academically-robust outcome measuring tool which is available without charge to every local Shared Lives organisation in the UK. The tool shows that Shared Lives services are reporting very high rates of improvement in the indicators of good health and well-being which matter most to people, which are as much about people’s connections (how many friends they have, for instance), as they are about their independence.

But as long as we continue to measure community services using terms defined by acute and crisis services, we will continue to conclude that life-changing approaches like Shared Lives are nice, but not essential, and we will tie up the lion’s share of limited public service budgets in buildings which many of us could avoid with a little bit of the right help, in the right place, at the right time.

Being and well-being

This is a guest blog from my colleague Anna McEwen (@AnnaSharedLives):

The NHS is great for putting us back together. In the last month alone I’ve needed three different health interventions or procedures where my body has let me down. I am amazed at what modern medicine can do where in the past I’d probably have had to grin and bear it. Some of those interventions have been brilliant – community clinics carrying out operations rather than having to go into hospital, text and book rather than a series of letters in the post to appointments I inevitably can’t make; others less so when I’ve waited many months for a repeat of an intervention that didn’t work the first time, simply because that is the protocol.

But that’s the point of the NHS, putting us back together when we need it. It’s not so good at giving us a good life when we have conditions that aren’t a ‘one off’ or ‘put me back together and send me on my way’.

Last week I joined the latest cohort on the Leadership for Empowered Communities and Personalised Care (LECPC) programme. Some people have questioned why I’m doing this, when the very nature of what we do at Shared Lives Plus is in its essence based in the heart of communities and epitomises personalised care.  I’ve ‘grown up’ very much with those values at the heart of what I do in community based roles, advocacy and even as a commissioner very much engaged in finding community based solutions to the needs of local people.  However, I think it’s important for all of us as leaders to find time to stop, step back from the day job, listen and reflect which is why I’ve joined this programme.

On the first day of the programme I was struck by Cormac Russell’s analogy of Humpty Dumpty being picked up and not able to be put back together by the King’s horses and King’s men – what if he’d fallen on the other side of the wall and been caught by his neighbours, friends and community? What would have happened then? And we’re very quick to call something a ‘crisis’ and treat as such (homelessness, social care, loneliness etc.) when they are in fact a chronic situation and if we stopped the crisis reaction and looked instead to long term, community based solutions designed with and for the people involved we’d have a better chance of success.  The more we move into the acute, crisis mode, says Russell, the more we disable citizens.

As a commissioner, I was all about commissioning for outcomes but now wonder if we are commissioning for the right outcomes: those softer outcomes which really make a difference to people’s lives – like building relationships, talking to a neighbour, volunteering in the community, joining a local group. These are the things that give our lives meaning and purpose and ultimately give us well-being, not just ‘being’.

We know all about these outcomes in Shared Lives, people tell us they make new friends, join groups in their community that aren’t labelled as being for disabled people and gain a sense of well being that they’ve not previously experienced which can have profound benefits on both physical and mental health.  I was inspired by others on the LECPC programme who are leading some really innovative work in small patches around the country and I know there is a wealth of amazing stuff happening.

When I tell people about Shared Lives, they always say it’s a no-brainer, that it’s a brilliant solution etc. etc. But that no-brainer is still small, and struggling to break any ground as a healthcare solution. The 200-plus people who our Shared Lives Ambassadors (who have lived experience of Shared Lives) spoke to recently at NHS Expo all agreed that it was a brilliant idea, but still the system bogs us down and makes it difficult to do new things.

My take away from the leadership programme this week was to give away more power, listen more, and get more disruptive. So, for people who are ready to get disruptive in the health system and develop new ways to give people a good life, not just put them back together when they need it, we’re running a series of free workshops facilitated by Nesta to look at how you could develop Shared Lives where you are.

We really need people who think Shared Lives is a no-brainer to make it a reality for people so do sign up and come along to one of our sessions so we can help you to help more people have a good life. It’s free, there is nothing to lose, so come along or share the invite with a colleague and let’s get disruptive……

The workshops will take place from 11am – 3pm in the following locations:

Monday 28th October: London (Friends House, Euston Road, NW1 2BJ)
Tuesday 29th October: Birmingham city centre (venue tbc)
Monday 4th November: Manchester (Manchester Art Gallery, Mosley St, Manchester M2 3JL)

Click here for further information and to reserve your place.

Inside out

Meg describes Shared Lives as helping her feel human again, after years in institutional care: “People who work with you on the ward care, but it’s their job. My relationship with my Shared Lives carer was different.” Meg works as part of our team and was with us at our very busy stand at the big NHS Expo conference in Manchester. We met well over a hundred NHS colleagues who found about how we are bringing Shared Lives into the NHS with the support of NHS England’s personalised care team. Meg interviewed the national Director for Personalised Care, James Sanderson, and Simon Stevens, the NHS’s Chief Executive.

Personalised health care is partly about people who make extended use of health services getting more choice and control over their support, through personal health budgets and other mechanisms, it is also about creating entirely new ways for people to get the support they need. Our new report with support from NHS England sets out how Shared Lives can be at the heart of this change which is going to reach 2.4 million people by 2024:

Jenny, 17, from Bolton, lived at home and is interested in art, and animals. She also struggled to interact with others and has a diagnosis of mixed mood disorder, anorexia nervous and self-harm. Her mental ill health eventually led her to staying for three months in a specialist
inpatient service. There, Jenny’s ultimate goal, with the support of the CAMHs team, was to recover her mental health, her confidence and her family’s confidence too. With the support of Shared Lives, Jenny could return home to her parents and they settled on regular respite, visiting a Shared Lives carer’s home and family every week, even though they initially thought it might be better for Jenny to live in with a Shared Lives carer. Jenny went for meals with each potential carer and then stayed with them independently as she felt comfortable and was able to relax. She told the scheme how proud she felt of herself for interacting with new people. Through the sensitive approach of Shared Lives, Jenny has gained in confidence, self-esteem, hope, independence and optimism. Although she still self-harms, it’s not as often and there has been no further accident and emergency visits – a pivotal milestone for Jenny and her family.

Our report sets out what we’ve learned about how Shared Lives can be a route to great health, particularly for people who have a complex mixture of medical and non-medical needs. It also shares what we’ve  learned about how hard it is to persuade busy NHS teams to understand, value and use a very novel approach to health care. At today’s NHS Assembly we talked with Simon Stevens and his colleagues about how we can develop a sense of shared responsibility for healthcare, which means sharing power, decision making and resources with the people who make most use of the NHS, and those groups and communities who are most likely to miss out or be excluded. We need all NHS leaders to follow Simon in seeking out and listening to people who know what good – and bad – healthcare means from the inside out.

 

Where human rights begin

One of my favourite quotes is Eleanor Roosevelt’s comment about where human rights begin: “in small places, close to home”. It would easy to hear the humility in that, and miss the ambition carried by that humility: our rights to be human, not as an abstract principle to be debated by philosophers or politicians, but to be lived, by all of us, all of the time. When we go home, all of us live in those small places.

Roosevelt’s quote reminds me why institutions are so incompatible with human rights: traditionally they are big places, however many homely touches we may add. Even though the buildings may be smaller these days, and have more ‘homely’ touches to alleviate them, services remain places where too many people are let into an individual’s life. Bureaucracies have the same effect: bringing public discussion and impersonal forms into people’s most intimate moments. Meg Lewis, who found a route out of the impersonal space of a mental health ward into the ordinary family home of her Shared Lives carer, talked about the thick file of ‘everything embarrassing I’ve ever done’ which followed her around the hospital, before life became what it should be: “going on adventures and making friends”.

A couple of weeks ago, we saw the corrosive effect that letting strangers into people’s intimate lives can have, as a team of workers at a large service dehumanised and assaulted people with learning disabilities, feeding off their distress for their own amusement. This BBC exposé was almost a carbon copy of one approaching a decade earlier, and of institutions exposed as havens of abuse through decades before that. Every big scandal and big reform programme, with their senior leaders, big budgets, committees and frantic timescales has failed to stop this kind of abuse happening. They have seen a big problem, and tried to impose a sweeping solution, whether it was a service restructure, or new commitment that lots of organisations signed up to, or new regulations. Those programmes have been too huge to pay attention to the small places, close to home.

Meanwhile, Shared Lives carers and their families, like the hundreds who attended Blackpool Shared Lives’s 30th anniversary celebration last week, have been quietly helping people to live good lives, in ordinary family homes, as part of a supportive household. There are 10,000 Shared Lives carers now; there have been many thousands more during our 40 plus year history. It is their willingness to share their homes and personal lives with another individual that has been the success of the model, as people have achieved small things like learning to cook chicken curry, joining a local club, or travelling on the bus independently for the first time. Those small things make a huge difference.

Our challenge during Shared Lives week, which this year has a human rights theme, is to make a big deal out of those small changes. To have huge ambitions for Shared Lives whilst making sure it is offered to thousands more people. To convince the big bureaucracies of local government and the NHS that this human-sized, infinitely variable model is part of the solution to the huge problems facing our crisis-ridden public services. Rachel, a Shared Lives Plus Ambassador who works as part of the team to speak about Shared Lives and to help us improve it, said at the Blackpool event that she is “lots of different things at once”: she is not just someone to be supported through a service. Even a brilliant service will fail her unless she has the right to be a football fan, a brilliant knitter, a charity ambassador, a cook.

We need now more than ever to believe in the value of getting the small things right. Getting the small things wrong always means we get the big things wrong and ultimately it will thwart every ambition we have as individuals and for our public services. We are often asked how we are going to scale up Shared Lives. Shared Lives week is a time when everyone can help us to do that through spreading the word, celebrating your local Shared Lives carers and, for the first time, signing up as a supporter. But just as important as scaling things up is our willingness to scale things down. To think about the small places, where human rights begin.