#LessonsUnlearned

A Norfolk Adult Safeguarding Board report has reported on the deaths of Joanna, “Jon” and Ben (all in their 30s), who had learning disabilities and had been patients at Cawston Park Hospital. I wrote about Ben King here. The political debate about the future of social care has been almost entirely about money, but there is no lack of money problem here: Care of the kind these much-loved young adults received can cost £12,000 per week. As government care inspectors CQC have set out, there are nearly always community or home based alternatives, and these are invariably lower cost (Shared Lives is on average £30,000 per year lower cost, and CQC says it is 96% good/outstanding).

The Safeguarding Board sets out lessons and learning, including what professionals should do (ask more questions, be more ‘curious’, challenge more), giving people ‘meaningful occupations’, paying attention to physical health. The fact that these things need to be recommended, says that there is something deeper going on than a few ‘bad apples’. Until quite recently, racism was talked about by the media and politicians almost entirely in terms of individual behaviour. The reality that racism is structural and built deliberately into systems is still one which many white people, who often benefit from those systems, are reluctant to accept. We need to think about the oppression of people with learning disabilities in the same way. The ‘lessons learned’ from these abuse or neglect scandals are always the same. We need to start calling them Lessons Unlearned, and asking ourselves why we refuse to learn them. The lessons and learning from the Norfolk report include none of these:

  • This support system structurally oppresses disabled people.
  • This support system is designed to give non-disabled people a powerful voice, and disabled people and their families no voice, except for tightly-prescribed opportunities to talk on terms entirely decided by others.
  • The in-built risks of these kinds of services make them unacceptable in a modern society, and they must close.
  • Alternative services can only safely be designed by disabled people and their families.

No system or bureaucracy has a self-destruct policy, so no matter how badly it fails, it will always recommend improving itself, not replacing itself. The non-existence of a part of the public service system shouldn’t be more unthinkable than the end of a human being’s life, but these reports always start with the assumption that it is. The lessons are always the same, because what can never be learned is: we have to cease to exist for people to be safe.

Something pointed out to me by Philipa Bragman and demonstrated on a daily basis by the leaders with learning disabilities who worked (were employed, not volunteered) at CHANGE is that people with learning disabilities are the only oppressed group who are systematically excluded from what should be their own civil rights movement. As long as those of us who work in the public service sector continue to try to learn lessons on behalf of a group who are harmed and killed by a set of public services with what should be terrifying regulatory, they will remain lessons unlearned.

A clear plan for social care?

There were reports of frantic negotiations within government and last-minute drafting and re-drafting, leading up to the publication of this weeks plan for social care reform. These can’t have been true because as we all know, the plan was already clear and prepared two years ago. Now we have it, some things are clear:

  • It is the first government investment plan for social care for many years – that’s better than where we were
  • Some people who currently pay unlimited amounts for social care will be protected from some (but not all) of those catastrophic costs (care costs are in, but room and board in care homes are not)
  • Most of the money is actually for the NHS – for social care to get an increasing share of it as planned, would be the first time such a big transfer of resources from health to care has ever happened, making it possible but unlikely

The debate has been 90% about older people, whose care makes up 50% of social care, with disabled people’s care and support remaining fairly invisible. The debate has been about 100% about paying for that care, not about what needs to change about it. It’s possible that the biggest change which will come after this week is that the new system may bring enough people into the state-organised social care system to raise its status to a level where people demand as much of it as they demand of education and health: a second or third increase in social care funding may not be as hard, or take as many years, as the first.

There is a White Paper planned to set out what the plan really will be. So the real work starts now. The Dept for Health and Social Care has been given just enough money to start to envisage a different future for social care. Fortunately for the government, the UK social care sector, despite or perhaps because of the years of hardship it has faced, doesn’t just contain the crises, failures and scandals which make the news, it also contains some of the most exciting and effective innovation in the world. We don’t need to look abroad for new models – they come to us, regularly, to find out about ours. We just need to scale them. And the ‘we’ of course, cannot be experts, councils and provider organisations alone, it has to be the two groups of people who matter most:

  • the people and families who make most use of social care services
  • the groups and communities most poorly served by social care services

The starting question for improving social care is not ‘How do we improve social care?’ It’s ‘What does a good life look like, and how can we get there?’ This vision has already been set out by a group of people who use services called Social Care Future. If there had already been a clear plan, it would have been the wrong one, because the only way to get the right plan is for people who use services to be in the lead as we try to imagine the kinds of communities, organisations, support and systems which will build that vision.

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.

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

Icebergs

Lots of us spend a great deal of time thinking about how to change entrenched organisations and public services, and I think this change model from Helen Bevan and the NHS Horizons team is a really helpful tool for that. It’s also here with animation.

It shows all the things you have to influence to create change in an organisation, system or area. Above the waterline are the familiar things that we try to change when we talk to a council, an NHS organisation or another body: its vision, policies, goals etc. But below the waterline are the other things we need to change which are harder to identify and which the organisation itself may not even recognise: its values, underwritten rules, beliefs, myths….

What this says to me is that when we are trying to introduce Shared Lives, Homeshare or Family by Family to an area or organisation, we need to pay as much attention to what’s below the waterline as what’s above. So we need to use story telling as much as we use data. We need to find and support internal champions in the organisation, who can engage with their organisation’s culture and beliefs, as much as we need to make our more formal external offers such as business cases, options analyses and cost-benefit data. This is why the work done by our Ambassadors, who all have lived experience of using our members’ support, makes such a difference: they have often experienced directly the impact of what happens in organisations below the waterline, and their insights and moral authority reaches the parts that colleagues who lack that kind of experience cannot.

New online community for UK’s Homesharers

My colleague Alice Williams has written a blog about our new Homesharers’ online community, which we believe may be the first national community of its kind for young people and other Homesharers who move in with an older Householder as part of Homeshare in the UK and in Ireland. Alice writes:

Being a Homesharer can be a great experience, which is as much about the great relationships people form with their host, as about being able to live affordably near where you work or study. It also comes with responsibilities and it can feel like you are in a  different home environment to your friends and peer groups. Meeting like-minded people in similar situations can help both new and experienced Homesharers to feel connected and recognise they are part of something so much bigger than their Homeshare match.

So we have been busy over the last few months with our web team on a new area just for current Homesharers in the UK and Republic of Ireland. It’s completely free to join and once signed in Sharers can access useful resources, tips and advice on settling in, what to expect, breaking the ice and building relationships. There’s tailored guidance on living with older people and people with dementia and also some history of Homeshare for those interested in the context of the movement.

Members can connect with Sharers around the country: there’s a forum and newsfeed-style homepage to share stories, ask questions and get advice from peers.

There’s even online learning for Homesharers to work through at their own pace, with sections coming soon on “Getting the most from your Homeshare” and “Safeguarding vulnerable adults”, designed specifically for Homesharers who do not take on formal caring responsibilities, but often have questions about what they should do if a new or unexpected situation were to arise. Once completed, the sharers will get a certificate to accredit their learning that can be used for other Homesharing opportunities in the UK and around the world and as part of ongoing personal and professional development, which will be particularly helpful for the many Homesharers who are studying for or starting a career in caring or public service roles.

We are really excited about bringing this group of people together to enhance their Homeshare experience and hopefully feel more connected and engaged to their householders and the wider Homeshare movement.

If you are currently homesharing in the UK, it’s easy to sign up here: Sign up the Sharers Area Here

If you are thinking about Homesharing, these resources will be available once you are in a Homeshare match. In the meantime you can:

get more information here and

contact your local Homeshare providers here

October newsletter and UK conference

  Shared Lives Plus
October newsletter While Covid-19 continues to loom large, Homeshare organisations, Shared Lives carers and those they care for continue to show great resilience during exceptionally challenging times. Our latest newsletter begins with one of the highlights of our forthcoming UK’s shared living conference where we will joined by, among others, internationally acclaimed social entrepreneur Hilary Cottam:     This sought-after webinar will be chaired by author and former Guardian columnist Madeleine Bunting. Joining Madeleine and Hilary will be Shared Lives Plus ambassadors Tom Milnes and Meg Lewis, along with CEO Alex Fox OBE, with the discussion focusing on how person-centred health, care and support services will help people to thrive and live more fulfilling lives.    Book your place now!   2020 theme: Kindness Delegates and keynote speakers such as Madeleine Bunting and speakers from the Carnegie Trust, people with lived experience and our UK-wide team, will all be contributing to our annual conference, as we work towards our vision of a kinder, stronger society built on sharing our lives and our homes.      Shared Lives care championed in latest CQC report
We are proud to have been highlighted in the new CQC guidance covering the regulation of services for people with autism or a learning disability. The ‘Right support, right care, right culture’ report outlines how providers should demonstrate they are meeting CQC requirements and also features a Shared Lives scheme, rated ‘outstanding’, as one of its case studies. Read more here…

This week, the CQC also released its ‘State of care’ report, which shows that Shared Lives outperforms all other forms of social care!      Did you know your Shared Lives scheme could save you half a million pounds a year? We offer strategic advice to local authorities and Shared Lives schemes to help develop, diversify and grow Shared Lives. You can read the latest blog from Mark Gallagher, strategic advice and support manager, or find out more here…   If you’ve not already, do keep in touch and sign up to my not-so regular newsletters. Until next time, take care and stay safe,


Alex Fox OBE FRSA
Chief Executive, Shared Lives Plus
NHS Assembly Member, Vice Chair: Think Local, Act Personal     Subscribe to Alex Fox’s newsletter

Out of sight – who cares?

The latest report on inhumane care for people with learning disabilities in modern day Britain, this time from care inspectors, the Care Quality Commission, could not be more damning:

“we found that time and time again people were not getting the care they need, when they need it. We have attempted to reflect what we saw and the many examples we found of care that was undignified, inhumane and that potentially breached people’s basic human rights. We are grateful to those who have shared their experiences with us, and hope this will go some way to illustrate the trauma they have been through when they have sadly been failed by the system that was established to care and protect them (whether due to hospital admission from lack of crisis care, segregation or inappropriate use of restraint). Cumulatively, the evidence that we have gathered points to a system where people with complex needs fall through the gaps. We cannot be confident that their human rights are upheld, let alone be confident that they are supported to live fulfilling lives.”

They were not talking about exceptionally bad services: this is their verdict on what is considered normal for an entire group of people. Their recommendations are sensible. And they will make little impact. The report itself acknowledges the long line of similar reports going back decades, all with clear pictures of failings that are ‘shocking’, despite each having the same overall message. So the CQC’s entirely sensible recommendations about improving accountability, oversight, training, assessments and even their own inspections, will not prevent the next such report. This is a report about people with learning disabilities, not by them. It is about how to improve models of care which actively harm people, with ‘care’ that in many cases would be considered criminal if it was for any other group of people. This report should have one recommendation: close these institutional services and replace them with the models which CQC itself acknowledges can work. As the report itself says,

Another alternative is possible.

The question asked by the report’s title remains unanswered: Who cares enough to bring that alternative from the realm of the possible into reality?

In the meantime, the reports pile up, along with the wasted days spent out of sight, and out of mind.

Danger

One of the ironies of safeguarding practice, is that when it’s not done well, it can bring new risks into people’s lives at their most vulnerable times. This is partly because there is – almost inevitably – a power imbalance in any safeguarding process: it’s a time when professionals exert their power, often under pressure and at high speed, and when people can feel like they are least well-listened to, and have fewest choices.

Safeguarding situations are supposed to be when everyone’s focus is on the risks facing the individual, but these situations also feel risky to the professionals carrying them out. It can be career-ending to get a safeguarding decision wrong, and conscientious professionals live with the anxiety of someone suffering preventable harm ‘on their watch’. When professionals and people who use services are both scared, it’s the fear of the person with most power – the professional – which wins out. Social care making safeguarding personal guidance aims to put the focus on the individual’s wishes and best interests, but where professionals’ own fears, and power, remain unspoken, it can be difficult to achieve a genuinely personalised and asset-based approach to safeguarding.

Safeguarding incidents are far rarer within Shared Lives than in other kinds of support (according to safeguarding data from care and health inspectors, CQC), but when concerns are raised, they are not always responded to well. Shared Lives draws on elements of both a service and of family life, with Shared Lives carers taking on a role that is at once professional and personal. The model draws its strength from that unusual combination but (as I wrote about in my book) it means it exists in an ambiguous (liminal) zone between service-land and private life, where professionals can feel dangerously lost as they try to follow rules which don’t quite fit.

Samir (name and identifying details changed) has lived happily for many years in a Shared Lives arrangement, with Maya who supports him with autism, a learning disability and health care needs. There is a busy road outside their house and after breakfast Samir, who needs support with travelling safely, usually sits in a room facing the street waiting to be picked up for his daytime activities. As in many houses, the front door is kept locked for security. Sometimes Samir finds it funny to sneak out and walk to his daytime activities, without telling anyone he has gone. Last time he did this, Maya immediately phoned ahead to say Samir would be arriving on foot and asked them to contact her when he arrived. He got there safely but did not come home. Continue reading