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.

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.

NHS Reset: Looking closer to home for solutions to social care

The NHS Confederation kindly published this blog as part of its NHS Resetcampaign to contribute to the public debate on what the health and care system should look like in the aftermath of the COVID-19 pandemic. Full blog here.

There can be few more daunting challenges than safeguarding an entire population against a deadly virus.

And while the spotlight was initially on the vast and justly celebrated achievements in acute care, the social care sector took weeks to persuade leaders to focus on the tragedy which was quietly unfolding in our care homes, until the numbers became too huge to ignore.

specialist report estimates that more than half of all deaths in the UK that are directly or indirectly related to COVID-19 will have been among care home residents.

We may never know how many more people who use social care died, isolated at home following visits by untested and poorly equipped social care workers.

There is an argument being made that this discrepancy between relative success in protecting the NHS and the unconscionable number of deaths in social care demonstrates the need to merge social care into the bigger, better-resourced and more loved NHS.

But there’s another way to look at this, and one that offers optimism and hope to set against the UK’s grim death toll, one of the worst in the world.

Only connect

Perhaps the most positive – and unexpected – impact of the crisis has been the number of people who have proven willing to support and connect with each other.

We saw 750,000 would-be NHS volunteers sign up when the call was raised, while countless thousands formed their own mutual aid groups. This has not been evenly distributed but it hints at a different way to approach keeping people well – particularly the isolated older people who are one of the biggest groups using health and social care.

There are existing models that show us what can be achieved when we start to consider more localised, community-based options.

These include two innovative home-based models, Shared Lives Plus and Homeshare UK, which have proved resilient and have indeed flourished while the pandemic has had a devastating impact on some building-based services.

Shared Lives – now used by approaching 15,000 people in the UK – is rated as the best performing social care model by the Care Quality Commission. It matches an approved carer with someone who needs significant support. Uniquely in adult care, the older or disabled person moves in with their chosen carer and lives as part of the household or visits them regularly in place of traditional short breaks or day services.

powerful example of the service in action is Meg, who now lives independently with a Shared Lives carer after a history of mental illness and self-harming including four and a half years of residential hospital care.

Almost every area in England has a scheme and 79 per cent of them now offer healthcare as well as social care for people with mental ill health, acquired brain injury, stroke or other long-term conditions. With no staff team going in and out of the Shared Lives household, infection and mortality rates have been mercifully low.

For many users of traditional social care, an extended period of isolation is bringing risks to their mental health. Home-sharing not only addresses this, but it also offers a solution to the eternal challenge of releasing acute care beds when patients are ready for discharge but need some support with ongoing health or care needs.

In a post-coronavirus landscape, we will need our hospitals and medical facilities to recover and thrive. More crucially, we need a wider support system that enables people to live safely and well at home.

A kinder, more connected society

Looking back on the pandemic, we were able to ‘protect the NHS and save lives’. But there were times when it felt like we were protecting the NHS from the older people who needed it most.

Going forward, we need a new approach to both health and care which is focused on keeping people safe and well at home. This will reduce pressures on the NHS, but most importantly it will offer people a life during and after lockdown, not just survival.

Shared Lives, Homeshare and other forms of personalised care must be central as we look to create a stronger, kinder and more connected society.

The connections that people are currently making with each other are as crucial to the next phase of COVID-19 planning as the smoothly running hospital was to the first.

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.

Whatever it takes

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

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

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.