Latest news

Corona virus guidance for Shared Lives people and agencies is here. More detailed FAQs on the members’ area of our website and via our members’ bulletins and calls. To get my Shared Lives Plus newsletter (latest edition here) please enter your email address here.

A new health and care system: escaping the invisible asylum is published by Policy Press and launched at Nesta in London with Simon Stevens (video), Chief Executive of NHS England, who said, “This is a profound and timely call for a different relationship between people and the services and institutions of the welfare state. It’s a radical and necessary call to arms for a more human, personal and connected society” Read the introduction here & get a paperback or Kindle copy here. My latest report, on creating asset-based charities, is Meeting as Equals (RSA & NCVO).

Our latest short films:

We will learn no others

“Friendly and loveable” Ben King died aged 32 after spending over two years at Cawston Park Hospital last year. Ben’s was one of three concerning deaths since 2018. The hospital was in special measures at the time of his death and has now been closed. According to the charity Inquest, the inquest into Ben’s death found that the breathing problems which ultimately killed him, were down to a preventable health condition, caused by obesity which had got out of control when his day support and activities were cut. When he died, there was not even any plan to help him lose weight, despite multiple hospital trips. He was also hit, hours before his death, by hospital staff, who failed to take his condition seriously enough to get him life-saving treatment. So much about this story is familiar from other tragedies: the fuller life led with his Mum, and then, when his Mum could no longer care for him, the decline through unhappy care services, behavioural issues, institutional care, poor medical regimes and diet, and in the end a bereaved mother campaigning for the truth and some semblance of justice.

It is the failures and abuses immediately surrounding his death which shock most: a staff member ‘struck’ him twice when he was already dangerously ill (I can find no mention of a police investigation). Another ignored him as he died.

But in every case of this kind, it is the long-term, systemic failures which should make us most angry: the inability of expensive services to help Ben live as well as he had done with his Mum, who would have had a fraction of the state resources that were spent on Ben’s care. The budget ‘savings’ made by withdrawing a fitness regime which would have kept him alive. The increasing use of powerful drugs to keep him sedated, with little apparent awareness of how dangerous they were.

The inquest makes clear links between Ben’s hospital admissions and bad choices made by highly-paid experts. Why were those links made by none of those experts? The longer someone remains in a medicalised environment, suffering repeated and worsening crises, the easier it becomes for professionals to see that person’s medical and disability labels, their ‘challenging’ or ‘complex’ nature, as the reason things are going wrong for them, rather than decisions the experts are making, which come with all the reassuring rigmarole of diagnoses, risk assessments, multi-agency planning, case notes. Few if any would have a clear picture of how much better his life had been just a few years before. Did his mother’s concerns become easier to dismiss? Some professionals are prone to talk of families’ (particularly mothers’) ‘over-protectiveness.’ And of course, the more unprotected their son or daughter appears, the more protective they try to be. Services, however, are never described as ‘under-protective’, even when their complacency leads to people’s deaths.

As someone becomes de-humanised, their life diminished, their choices and dreams shrunken, their medical issues more enthusiastically examined and labelled, their distress pathologised, then failures or abuse by individual workers become more likely. There will have been skilled, compassionate people working at Cawston Park Hospital. Its parent company has a social media feed full of lovely-looking care and activities (no mention I could see of Ben or the inquest). But there is a long history of organisations which charge thousands of pounds for their expert care attracting people who are thoughtless or cruel, or who become so.

Another young life lost. Another grieving family. No doubt even now, someone well-paid to provide “strategic leadership” to the services which failed Ben and many like him, will be saying that ‘lessons will be learned’. But we remain hell-bent on ignoring the lesson that disabled people and their families have learned in their thousands for centuries: there are deadly risks and harms inherent in incarcerating people out of reach of family, friends and community. For as long as we continue to ignore that lesson, we will learn no others.

It’s so much quieter here than on the ward

The World Health Organisation showcased the South East Wales Shared Lives Mental Health Crisis Project at their global launch of the WHO Guidance on community mental health services: ‘Promoting person-centred and rights-based approaches’. In our seminar to celebrate this (film on YouTube), we heard from Nikita and Mags who talked to Emma  Jenkins the South East Shared Lives Mental Health Crisis Project Manager who had matched them together into a life-changing Shared Lives arrangement. Here is some of what they said:

Nikita

Before Shared Lives I had no fixed abode and I kept going back to hospital. I had a CPN and treatment but I was feeling awful and suicidal.

I had no idea what Shared Lives was – I was pretty apprehensive – I’d never heard of anything like this in my life. Kerry told me I could stay with someone rather than be on the ward I wanted to meet Mags at her home not on the ward and when I went to Mags’ house I knew it was a great opportunity for me to grow and so much better than the ward.

Mags

Before someone comes to the house, I will have had some paperwork and discussions with my Shared Lives worker but it’s not until you meet the person and they are sat in front of you that it becomes real. The Shared Lives worker knows my strengths and my experience and will have matched up an individual they think I can work with. But at the initial meeting I need to quickly establish a connection to see if I can work with them and they want to work with me. It’s that mutual respect that matters.

Nikita

Shared Lives is a really important opportunity because the ward can’t offer you the same amount of one-to-one attention. They have limited resources and you can’t do a lot of activities which would promote your wellbeing after your stay like cooking, going walking, seeing your family. It’s so much quieter here and great to be able to be outdoors with someone’s support.

Mags

I’ve been lucky enough to have several arrangements. You have that opportunity for one to one. It frees up space on the wards which is also good. You have time to introduce the individual to community activities, education, exercise. I’ve had some really good feedback from people who have said it’s much better for them.

People start to live normally again – just ordinary things like being able to use an iron, or cutlery again, which may be banned from wards because they are a self-harm risk.  

Nikita

When I was at Mags I was able to do my university work on my laptop. On the ward I couldn’t go on my laptop so I was already behind which was making me so anxious.

Mags

I have a garden here. I find people are up for being introduced to new things – whether its gardening, books, exercise.

Nikita

I trained for a half marathon at Mags’ and did the run just after I moved. It was a huge achievement for me just being able to run when I was at Mags’ which I couldn’t do on the ward.

Mags

I went to watch her at the finish and me and her Dad cheered her in – it looked hard work!

Emma

It’s obvious that you’ve formed a friendship – you don’t have to do that after the arrangement has ended, but it looks like that’s natural for you both?

Mags

The person who comes to your house is a human being – we have interests in common and we get on!

Nikita

I’ve started to live independently now – lots has changed but it’s all positive. It’s important for other people to know about this. It’s not an option for me to go back into hospital – it’s not something I think will happen. I want other people to know about Shared Lives as well.

To find out more about the South East Wales mental health crisis service read the WHO report or find them here.

Disintegration

This blog was kindly published by the New Local Government Network last week here: Forget integration: we need to disintegrate our public services – New Local

Every few months I find myself in a debate about integration. Long-standing health and care watchers like Richard Humphries, previously of the King’s Fund, have pointed out that this has been happening for as long as there have been separate health and care systems, with plans to integrate the two appearing every few years – dozens and dozens of them in 70 years – but none of them working.

I believe this is because we always start from the wrong question. We look at complex NHS systems and at bureaucratic social care systems and ask, How can we join these bureaucracies up better?

As ever, it’s worth thinking about what it would look like to take a strengths– or asset-based approach to this challenge. This would mean starting with the question, “What does a good life look like for people who use or might need health or care services?’ And then, “What role do services have in enabling those people to live safely and well at home?’

The answers to those questions need to come from people themselves- particularly disabled people and older people, and their families. They need to be conversations which include everyone – the people who make most use of health and care services now, but also the groups and communities who are most at risk of being excluded from or poorly-served by those services.

So we need our national and local leaders to do two things:

  1. Set a new shared goal for our dis-integrated public services. In my book, I suggest a single government department for community services bringing at least health, care, housing & local government services together, and a single goal of creating wellbeing and resilience (which is the capacity to maintain wellbeing through challenge and crises).
  2. Share power through insisting on co-production and resourcing the citizen-led organisations which are needed to coproduce with everyone.

How would we know this was working? I can think of three useful tests for integration – I’d be interested in what you think of them:

1. Can the system work with households as well as individuals? This tests whether services for people with different needs (and often different ages, such as the disabled child and their parents who are finding it challenging to care for them) can organise themselves around the complexity of their lives, putting us in charge of how resources are used. Or do our lives look hopelessly messy to them?

2. Does integration reduce inequalities? If it doesn’t, then some services may be integrating with each other, but they are not integrating with all of our communities, and community organisations.

3. Can I own and share my own information? This is a process-y point, but it’s a good sign of whether we are aiming to help organisations integrate their existing information systems, or if we are trying to help individuals and families take charge of their own information, and share it with the services which are valuable to them. Having to give the same information over and over is perhaps the most common complaint about dis-integrated systems. It’s not just inconvenient – that information is sensitive, personal or can be deeply painful – so repeating it shows that our dignity is not at the heart of a service’s thinking and actions.

So real integration will be both simpler (not having to make sense of existing labyrinthine bureaucracies) and harder (services accepting new goals and less power). We can replace systems which spend lots of time and money assessing people, but often don’t have a service, let alone the right kind of support, at the end of it, with simpler and more human approaches like Local Area Coordination, which put the rights kinds of help in the right places.

Just as the really hard bit of scaling up innovation is scaling down what we do now, building new integrated systems requires us to recognise that what is needed for some existing monolithic bureaucracies is, in fact, disintegration.

Wrong, dangerous – and deadly?

The latest annual LeDeR report covering 2018-2020 gives what Prof Chris Hatton of Manchester Met Uni describes as “comprehensive, and exceedingly grim” statistics on the deaths of people with learning disabilities. In his twitter thread, Chris describes the shockingly high proportions of people who died who were being given anti-depressants, anti-psychotics, and combinations of powerful drugs of those kinds. Anyone who has worked with people with learning disabilities in health or social care services, will recognise the routine way in which people who have at some point been described as ‘challenging’, ‘complex’ or having ‘behavioural difficulties’ end up on cocktails of powerful drugs, and then more drugs for the side-effects of those drugs (an average of over 6 drugs per person for those who died according to LeDeR). This often goes on for years or decades, with no obvious sense of what the drugs are currently doing for the person, or what would lead to doses being reduced.

Ethnicity, gender and type of disability label all have a bearing on how likely you are to be prescribed various kinds of psycho-active drugs. These statistics of course hide the individual people and lives they analyse, and the Bristol University team who produce the report make a point of starting each annual report with a few stories, like Angela’s:

Angela was funny and had a good sense of humour. She could say a few words and knew a little Makaton. Angela used to enjoy lots of activities including swimming, climbing, bowling and walking but she was less active as she got older. She liked to visit garden centres and listen to classical music.

As we know, “There was a significant increase in the number of deaths at the peak of the COVID-19 pandemic from March – May 2020.” This fact raises many unanswered questions about the extent to which people with learning disabilities were protected and well cared for during the pandemic, and their vital services given all of the safety equipment, support, testing and access to vaccinations which they should have been at an early enough stage. We know that some, perhaps many people with learning disabilities, were wrongly given ‘do not resuscitate’ notices by doctors who believed that they were justified by their disability. The LeDeR report found that 3/4 of those who died had a ‘DNACPR’ notice, with factors such as the person living in a service rather than at home making a big difference to the chances they had one. 6% (up from 4%) of notices for those who died were demonstrably wrong; these will not include incorrect notices put upon people who did not then die.

But it is the correlation between extremely high medication and deaths which Prof Hatton draws out which has been haunting me. As Chris puts it, “Everyone knows this level of medicating people is wrong and dangerous. And it continues.” As NHS England puts it, these drugs, if wrongly administered, can cause not just long term health conditions (such as those associated with weight gain caused by drugs) but other ‘serious’ health problems, yet “every day about 30,000 to 35,000 adults with a learning disability are taking psychotropic medicines, when they do not have the health conditions the medicines are for. Children and young people are also prescribed them.”

The number of things that ‘everyone knows’ are wrong, harmful or downright dangerous, which the NHS, social care systems, and learning disability services and their commissioners carry on doing anyway is a long one. I have argued before that as a public service sector, we have become adept at blaming people who use services for the things we knowingly do wrong: they are problematic, challenging, complex, and we are doing the best we can with limited resources. We are fluent in the language of risk and risk management, but wilfully blind to some of the most important risks (in my book I argue that when we say an organisation is risk averse, we usually mean it’s averse to some risks but stunningly complacent about the risks which matter most to people themselves).

But the implication of the facts set out by LeDeR are that the medicalisation of learning disability and the resulting over-medication of people who if they didn’t have learning disabilities would be treated very differently, could not just be harming, but in some cases, killing people. The NHS and government need to be able to answer that question with certainty, and if it is the case, the response to it cannot just be another ‘improvement’ programme.

Care Minister meets Shared Lives households

Helen Whately, Minister of Sate for Social Care, met new and long-term Shared Lives carers during Shared Lives Week this week, as well as the social care staff who approved record number of carers under the pressure of the pandemic, using adapted assessment processes.

My colleague Phoebe Barber-Rowell, who leads our communications, writes:

The carers included some of the 200 just recently recruited by a successful DHSC-backed campaign using the Covid emergency fund. The carers described to the minister Shared Lives supports 15000 people across the country,  accounting for just 1% of social care provision overall – and yet it is consistently, officially ranked by both the CQC and the people who use it as the safest, highest quality form of social care there is.

In a reverse of typical care services, the new roles, created by Shared Lives Plus, are the ‘ultimate post-pandemic job opportunity’ and point towards the much-discussed topic of the future of social care, as they see carers provide personalised Shared Lives support in the carer’s home – on either a long-term, respite or day-support basis.

Emily and Allen Portwood are Shared Lives carers based in Warrington and have opened up their home to two young adults, Molly and Tyler.  Emily said: “To us, this isn’t a job, it’s about providing a home, security and happiness within our family for those who need it.

“We got into it because Allen, who is a former policeman and has his own MOT garage, was really inspired to help young adults. We looked at all the options and Shared Lives was the perfect choice – there are no unsociable hours away from our family and we can just include them in our lives. We have a big family already – it’s just got a little bigger!”

The jobs follow a £300,000 funding boost from the government’s Coronavirus Community Support Fund, distributed by the National Lottery Community Fund, aimed at rapid recruitment of Shared Lives carers across the UK. Helen Whately, Minister of State for Social Care, said: “The pandemic has shown us the increased need for social care which offers more freedom, independence and choices and enables people to strengthen relationships which are so vital to our mental and physical health.

“I’m delighted that Shared Lives Plus, under the extraordinary pressure of the pandemic, with the support of government’s Covid Emergency Fund, has ambitiously transformed the way local authority and independent Shared Lives schemes recruit and assess potential carers supported by online technology, to provide innovative Shared Lives support in their own home. Shared Lives services, funded by our Covid Emergency Fund have exceeded their ambitious recruitment targets. A huge thank you to everyone involved and for all you do. I’m delighted to welcome 200 new Shared Lives carers, over the last six months, into the social care workforce, with over 100 people moving in with their new Shared Lives carer and benefiting from the safest and best quality form of social care available. The opportunity now that I really want to support, is to scale it up so that even more people can be part of Shared Lives households.”

Laura, who lives with her Shared Lives carer, asked the Minister a question. Here’s Laura’s question and Helen’s answer:

Care minister Helen Whateley MP meets Shared Lives households – Shared Lives Plus

Sheik, Roumanah and Kirsty

Here’s a lovely story of inclusion, kindness and creativity from Hertfordshire Shared Lives as we continue to celebrate Shared Lives week.

Kirsty Stubbs moved in to live with Sheik and Roumanah Tafajoul’s family in February of this year. Kirsty has an acquired brain injury from an accident five years ago and had been in a Care Home ever since. Kerry Faulkner from Hertfordshire County Council Shared Lives writes about how they made the match made in the middle of the pandemic:

“Kirsty’s mother contacted me and was extremely keen for her daughter to be in Shared Lives. We had to be creative with matching as we couldn’t do any of the usual processes as this would mean Kirsty having to self-isolate in her room for two weeks if she even had a tea visit and the carers were not able to visit her due to the restrictions, so Sheik and Roumanah and their family Skyped her every week for months so they could get to know each other. Kirsty’s family met the Shared Lives family and worked with them to ensure a smooth transition. The room was adapted for Kirsty’s needs as she is partially blind, so they installed an ensuite shower room and an OT visited to install grab rails etc.

“Just after Kirsty moved in Sheik and Roumanah found out they were having another baby (which was a bit of a surprise for us all!) but we all worked together to ensure there was a contingency plan in place to allow continuity of care for Kirsty and the other gentleman they support in Shared Lives, with an additional ‘support carer’ approved alongside the one the family already had.”

Kirsty’s mum Joyce writes:

“The Shared Lives secret should be made widely known – amongst health and social services, charities and many more.  Since my adult daughter, a head injury survivor, moved to her wonderful new Shared Lives family in February 2021, she has been able to enjoy family meals, movie nights, helping the children with their spelling, listening to their bickering and simply being accepted and valued for the person she now is since her accident. Working with the family is a pleasure, most especially since the family has now expanded to include a new-born baby girl. Kind, caring families with appropriate experience and a suitable spare room are out there, as are countless adults with particular needs.  So please spread the word so that more people can be looked after by those who know how to care.”

Keep them caring

It’s Shared Lives week, so if you live in the UK, look out for your local Shared Lives organisation celebrating the achievements of local Shared Lives households and the lives that people are living as a result. Here is Paul and his household in North Wales talking about love, laughter and belonging:

Meet Paul and his Shared Lives carers – YouTube

This week some Shared Lives carers are meeting the Care Minister Helen Whately MP to tell them about their experiences and how our new tech-enabled approach to recruiting has made it possible to recruit and approve people safely into this unique role in as little as four weeks, where before it was taking months. There is no reason why the government’s promised new vision for social care shouldn’t have models like Shared Lives at its heart. Social care is often seen as a rolling crisis – but the scale and results of our sector show it doesn’t have to be that way. We just need councils, social care organisations and politicians to be as ambitious and radical about the future as households like Paul’s are: seeing the potential and the hope where others have only seen need and problems.

Shared Lives week is a celebration, but this year it must also be a moment to acknowledge the strain that successive lockdowns have put on some households. While Shared Lives and Homeshare have proved to be safe and happy places to be for most during the pandemic, thousands of Shared Lives carers and their families have made huge sacrifices and given up vast amounts of unpaid time while their usual day services and other supports have been closed. Most councils have done something to thank their Shared Lives carers for this, and to help them with extra payments and flexibility around carrying over breaks, but not all have done this, and we are writing to local leaders on behalf of those members who feel invisible or taken for granted.

I hope that this Shared Lives week every local social care leader will take the time to say ‘thank you’ to their Shared Lives carers, acknowledge how difficult the last year has been, and ask them what they can do to keep them well, and caring.

Meet the sharers

Our new Twitter project is @MeetTheSharers, a brand new, year-long, rotation curation project from @SharedLivesPlus. Every week, for the next year, we’ll be handing over this account to a different Shared Lives family, so they can tell you all about their lives, in their own words.

The Portwoods are no strangers to the media spotlight, they were featured on @GranadaReports in February and now get recognised on the street. See the ITV news film here.

Emily and Allen provide Shared Lives support through @meetmacintyre, one of a network of Shared Lives schemes across the country. Emily is a full time Shared Lives carer, she loves the gym, Slimming World healthy eating plans, cooking, driving to nice places and walking. Allen is a vehicle technician and owns his own garage, he works each day to assess and fix cars then comes home to his Shared Lives life.

Image

Molly is 26, she works with children in an after school club, loves the gym, yoga, Pilates, and Zumba. During lockdown she has baked, walked and kept her friendship group going each Wednesday. Beth, on the left, is 22. She doesn’t live with Emily and Allen, but comes to visit them several days a week as respite care.

Tyler is 18 and is very much into his social media networking- he loves posting YouTube and TikTok videos. Tyler is an animal lover and is enrolled on a college course that involves learning about animals. Robert is 61- he is interested in films, he likes the musicals. Robert loves to socialise with people, he attends the Macintyre day centres and is looking forward to going back to the visual impairment centre when it opens up.

It’s a cosy household, which also includes Emily and Allen’s sons (Spencer, Declan, Harley, and Jordan), dogs Bella and Cadbury, a handful of guinea pigs, and a tank full of fish.

The professionals

Everyone agrees we need to raise the status of social care workers. But how? One of the approaches that has been proposed and debated many times is ‘professionalising’ the workforce. The Care Certificate which every worker has to complete in England is one example of this. Government funds Skills for Care to provide training programmes. Care workers in Scotland have to be registered, as do managers in Wales, but similar plans for England were shelved some years ago. On the face of it, registering workers sounds like a good idea: it feels like this would add to existing checks and the register of people deemed unsafe, giving more information about who was working in the sector. But would it actually change anything? Qualified social workers already have a register, so the people added to a register would be unqualified. Would adding this paper exercise raise the status of workers who are unqualified and often on minimum wage, or just put people off?

We come at the challenge of raising the status of social care from the wrong end, in my view. Calling for status – and wages – to be raised is just wishful thinking: councils have neither the funds nor any pressure to raise the amounts they pay for social care, to enable struggling providers to pay more for the same jobs. Even those residential learning disability services which charge councils or the NHS thousands a week can get away with using minimum wage unqualified workers, without challenge. We need to start with a new vision for what social care is for, which is enabling us all to live the lives we want at home when we need support, and then work out what kind of workers doing what kind of work we need to achieve that. The answer to that question is, whether in a care home, home care service, or Shared Lives service, we need to:

  • invest more in recruiting people for their values and communication skills, with the people they will support being in the lead on choosing who works with them…
  • which will allow us to create much more meaningful roles, where workers can form deeper, longer and more rewarding relationships with the people they work with…
  • which will raise the status and, in time, the pay of social care workers.

That can only happen if government, councils and providers all agree on a shared vision, and build it into how they buy and regulate social care, as well as how they develop the workforce.

Will these new workers be more ‘professional’? Yes and no. I was struck by two comments from people who employ their own support workers or ‘personal assistants’ at the Social Care Future gathering yesterday. Anna Severwright, the SCF’s convenor said,

I don’t want registration as my best PAs have never worked in care before and so wouldn’t be on a register. They don’t come to look after me, because they understand that’s not their role.

Tricia Nicoll, who employs PAs for the two young adults in her household said,

I often look for personal assistants who know nothing about autism: that way they don’t assume they already know who my children are – they have to find out by getting to know them as individuals.

What a contrast with those services which trumpet and charge for their ‘specialist expertise’, but don’t place the same value on the people they support getting to be truly themselves.

There is a kind of professionalism which is steeped in medical and psychological knowledge, but has lost sight of the people in a forest of jargon, labels, processes and risk assessments. To misquote Oscar Wilde, some professionals know the risks of everything and the value of nothing. If we take either the needs-focused culture of the more medical end of our sector, or the gig-economy devaluation of the most heavily-cut end, and codify them into more registers and bureaucracy, we will risk setting in stone our sector’s most entrenched problems. The strengths of social care are in its people, and often in those people who reject process in favour of the messiness of being fully human. Let’s create and grow the most human kinds of social care – the most social and the most caring – and put people and families in charge of deciding what ‘professional’ means to them.

Whose social care future is it anyway?

The Whose Social Care is it Anyway? Inquiry Group issued their first findings today from talking with over 500 people who use social care support. This was done by Social Care Future, a grassroots movement with a vision which sounds very different to so much of what the social care sector talks about:

‘We all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us’ 

They talked peer to peer with people about how to make that vision a reality. These are the five changes people called for:

Note that people didn’t talk about quality, safety, prevention, integration, innovation or the other jargony terms that so much social care policy can get wrapped up in.

The report asks whether national organisation like us at Shared Lives Plus will ‘commit to use the Social Care Future vision … in your work? Will you take direct action yourselves and support your members to act on the 5 key changes?’

These are easy commitments for us to make. We agree with these five changes and will try to make them happen. Shared Lives, Homeshare and Family by Family all help people directly with building communities where everyone belongs, living in a place that feels like home and leading the lives we all want to live. We are helping local areas to invest more money in growing those ways of working, for instance, working with the North East councils and ADASS to recruit more Shared Lives carers and match more people into supportive households.

We still have a long way to go on sharing power and being a charity that ‘meets people as equals‘ but our colleagues who have lived experience and are part of our team are helping Shared Lives Plus on that journey, and we are helping our local members to have better planning conversations so that everyone gets to shape their local services.

We are calling on the government to invest in models which bring these changes about as part of the long-awaited long term plan for social care. We could have a very different social care future to the social care we have at present, but only if we recognise that it’s a future which has to be shaped by two groups of people:

  • the people and families who make most use of social care now
  • the groups and communities who are most likely to be ignored or poorly served by social care