What would good look like?

When we talk about the shift towards a ‘people-powered’ NHS, we often talk in terms of culture and vision, but avoid suggesting actions which would transfer power to people, whether that power is in the form of money or other system levers. Chapter Two of NHS England’s Five Year Forward View set out how healthcare would become more community-based and people-powered. Whereas other changes involved setting up new kinds of organisation or using money in different ways, Chapter Two was a vision for doing things differently, with less clarity at that time about what new kinds of systems, services and relationships between people and the NHS would make that vision real.

During the last two or three years, we have learned more about what helps and what gets in the way of making the vision real. Shared Lives is one of a small number of new community-based support models which NHS England is directly backing to make the shift. Many of the Sustainability and Transformation Plans (STPs) which every area produced for its local health and care system talked about the need for a more community-based model but I haven’t read one which sets out a process for the transfer of money, knowledge, power or responsibility to local people and their representative organisations.

When that transfer doesn’t happen, nothing really changes. A highly regarded social prescribing programme, which demonstrated that it was enabling people to access new kinds of community support and improved their wellbeing, has just been ended by a CCG which decided it couldn’t afford it in tough times. It worked, but never became regarded as core business. The outcomes it achieved clearly weren’t those valued most by commissioners and the organisations involved did not achieve the status of equal partners with their statutory equivalents.

We need to put what we have learned into the NHS’s plans, and later in the year, the social care Green Paper. I think there are three kinds of change which would be present in an area which was doing people-power well:

  1. At least some of the money spent on health and care provision would be paying for people-shaped outcomes such as ‘wellbeing’, as it is defined in the Care Act.
  2. An element of the area’s infrastructure and commissioning budget would be paying for infrastructure that reaches, engages and convenes people, supporting them to take decisions at both individual and area level.
  3. Some of the oversight, performance and regulatory levers would be in the hands of people, via experts by experience and also their local groups. Current consultative structures would be replaced by well-resourced, trained and accountable forums and groups with teeth.

What would push or pull local health systems towards those three new ways of doing things?

The NHS is already putting some of its money and resources in people’s hands through an ambitious Personal Health Budget target. But this needs to be matched by ensuring every area has a brokerage service to help those people (particularly those least able to choose) to make individual choices and to connect with others who want similar things, to pool budgets and start to commission (design and improve services) rather than just to buy them. The Social Value Act enables commissioners who buy public services to demand that their suppliers give them added ‘social value’, such as using volunteers. The Act’s powers are used in a quarter of councils, but by very few NHS commissioners. This has to change.

It’s not just cash that needs to be put into people’s hands. In a people-powered area, family carers would be able to access medical expertise, training, equipment and emergency back up to sustain their caring roles. Social prescribing programmes can put money and resources into the hands of local community groups and social enterprises which help people to live well. Initiatives like Local Area Coordination and Health Champions create connections between people who use health services and their services and communities.

Some of this won’t happen unless the NHS moves some of the money it spends on infrastructure into people’s hands. Health commissioning is expensive, but currently most of it is ineffective in building community-based care, so some of its resources should be spent instead on people and organisations which can help citizens themselves co-design new models of care. Most local areas have organisations which organise and speak on behalf of the voluntary sector, such as the local Council for Voluntary Services and which represent people’s voices in health and care such as HealthWatch and Learning Disability Partnership Boards. Some have organisations which effectively build a local marketplace of lots of different kinds of charities and social enterprises. A handful build the smallest enterprises. In many areas these different kinds of organisations are fragile and disconnected, with unstable funding. User-led organisations and organisations representing overlooked communities are losing funding. None of these organisations have teeth. A people-powered area would bring those organisations together into a wellbeing hub which would ensure that citizens and their local organisations could help to design and monitor health and care services. It would inform and build a local marketplace of service providers and it could help local peer support groups and be a link between such grassroots initiatives and clinicians and other experts within the system. Commissioners should have to make themselves regularly accountable to the people they serve and a hub would be a way to resource and bring together user-led and self-advocacy organisations to make this happen.

This isn’t just about putting resources into people’s hands and offering them new rights. Rights are only meaningful if those people who engage share responsibility and ownership of the new system. So some of the system accountability must be put in people’s hands. As well as the hub model above, we need a new set of measures of what the NHS and care organisations achieve, which measure wellbeing, not just narrow clinical outcomes like mortality. Some health and care system performance measures could be wholly or partly scored by people who use health and care services and their local groups such as self-advocacy groups for people with learning disabilities and carers’ organisations. Local systems would need to develop, resource and challenge those groups to perform that function, which would help to address the longstanding problem of voice organisations existing on sufferance and scraps of money. They would also need to recruit experts by experience to use in commissioning, monitoring and inspection.

This turned into quite a techy blog. That’s deliberate: if we mean the vision for health and care which is rooted in communities and delivered with and by people themselves, we have to be able to describe the different systems and ways of spending money which would make that vision happen.

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Always compassion

I chaired the final session of a King’s Fund conference on co-production and the six principles of the Five Year Forward View today. Mark Doughty who developed “life changing” arthritis as a young man and is a senior consultant with the King’s Fund reflected on the difference between the kinds of relationships we take for granted in most of our lives – respectful, compassionate – and the relationships we have within ‘the system’, which can feel far removed from that. Initiatives like the late Dr Kate Granger’s “Hello my name is” campaign and the work of Andy Bradley and Frameworks for Change are attempting to bring the compassion back into what should already be compassion-focused fields of work, but too often aren’t.

Delegates suggested that the gap between the relationships we want and the relationships we have if we work in or are users of health and care services can often come down to time. As resources get tighter, time gets more and more pressured. Stress levels rise and even the common courtesy of remembering to introduce ourselves to people who might need intimate or highly stressful care from us can go by the wayside. Bradley’s work has a strong focus on self-awareness and self-compassion as the building block for compassion for others.

It could be argued that the current cuts to health and care service budgets make creating the time and space required for compassion simply impossible. But even within stressed and faltering public services there is an element of choice about what people at each level within the organisation choose to value and allot time to. Neil Churchill’s presentation on Always Events – practices which are identified jointly by people using services, practitioners and managers as being important to compassionate, effective care – showed that the case for compassion is often also the case for achieving outcomes and creating better value for money.

Deciding what is important and what to spend time on is of course about power. Part of the reason that the Hello My Name Is campaign was – shockingly – needed, is that there is a pervasive history of medical professionals believing in status and deference within the NHS. What felt important to ‘patients’ is not automatically felt to be what is most important to the services which they use and ultimately pay for.

We can experience the demands of ‘the system’ as all-powerful and inhuman, but in reality there is no ‘system’, there is only us, and what we choose to value and give time to. At present there are, though, more divisions between the different tribes of our public service world than there are shared beliefs around which we can build our public service sector into a unified movement. Our challenge – which is also the challenge of making co-design and co-production into Always Events in all public services – is to insist upon compassion and connection as always more important than anything else we might achieve, and when the pressure, stress and frustration mounts, to model it even as we fight for change.

 

We need to talk about PAM

There is a lot of excitement in the health service about self-care and patient activation. Patient activation is the field of trying to help and encourage people with long term health conditions to be more active in understanding and managing their health. There is a patient activation measurement (PAM) system which tracks the extent to which people are taking responsibility for their own health, managing medication and ‘self-caring’, rather than relying on medical professionals. ‘Activated patients’ are likely to be living more healthily and experiencing fewer health crises.

Patient activation is an unfortunate term for a potentially useful idea. If you start by thinking about people with long term support needs as patients, who need to be activated by doctors, you’ve already lost. This is borne out of the kind of thinking that talks about whether you take the medication your doctor wants you to take as ‘compliance’ and ‘non-compliance’. It sounds like it’s about taking personal responsibility for our own health, which we should all do, but it is yet to escape its roots in ideas of responsibility which are defined by the medical profession: to do what the experts tell you, so that you can reduce your risks of avoidable hospital admission and ultimately cost the NHS less money.

People who get this agenda acknowledge that the terminology is not helpful. So what would be more helpful formulation of this agenda? As always, we need to apply an assets focus to this question. An assets focus assumes that people have expertise in their own lives and looks for what they can or could do, not just what they need and can’t do. It requires looking through person’s eyes and those of people closest to them, not through a professional or service lens.

Looked at through these lenses, an individual with a long term condition is not primarily a patient: they are living their lives – sometimes their whole lives – alongside the condition, and whilst no one wants to use emergency and medical services more than necessary, that is unlikely to be anyone’s number one goal in life. So patient activation is actually about what in social care has for years been called choice, control and independent living.

At a deeper level, it is about supporting people with long term conditions to live well. The key NHS contribution to that will be about supporting their health and wellbeing, but this will only translate into living well when the system as a whole (health, care, housing, the voluntary/community/social enterprise sector) is designed around informing, empowering and connecting. We need to recognise that what we are measuring is both the positive and negative impact of service interventions on the strength and capability of the individual and their families. So if we want to avoid this becoming another failed attempt by services to fix us, we need to reframe the PAM in several key ways: Continue reading

Big changes in small places

There is a shift being planned for the NHS which has the potential to be one of the biggest in its history. Certainly more long lasting and with more potential to create real change for people than the scores of restructures which the UK’s favourite public service has had to endure during its nearly 70 years of history.

It’s a shift that has often been talked about as desirable, more recently talked about as essential, but never, if we’re being honest, one which has been backed up by real system change.

It’s the shift from hospitals to communities, but it can’t just be moving familiar approaches into smaller buildings. It’s the move from formal to informal care, but it can’t be about sacking your heart surgeon and replacing her with a volunteer, which is what many people will read into that kind of change. It’s the shift from a biomedical to a social model, but we’ll have to find some plain English for that. As Anu Singh eloquently outlines in her recent blog, it can mean support to self-manage rather than rely entirely on medical professionals, peer support or group activities, and health coaching, but it has to be about more than those new programmes, it has to be a change which takes root across the whole system.

This won’t be easy. Whether we work in healthcare or not, we are all taught that health professionals know best. The expertise of our health professionals, based on years of training and incredible advances in research and medical technology is fantastic and we should never take for granted that we access that for free: it often stops suffering and saves our lives. But that attitude of ‘doctor knows best’ is less useful when we feel that we aren’t really responsible for our own health, or can’t manage our own care. And it can be lethal when the health system ignores the insight of people themselves or their families which is a lesson we never seem to learn. It is these ingrained attitudes which both people using services and those working in and managing them find so hard to shift.

We talk about them as culture change, which is often code for things we don’t really think are achievable, and our responsibility. I’ve blogged before about the changes which are achievable and are the responsibility of us all:

  • Building asset based thinking throughout the system: this means everyone being trained to think first about what people can or could do with support, then about what they must rely upon services and professionals for.
  • Passing the ‘connection test’: expecting all services to connect people and avoid disconnecting people from their family, friends and communities, and having the courage to measure both the connections and disconnections.
  • Thinking whole-person, which for most people means thinking whole-family and whole-community. Family carers are not just another group of people with support, they have expertise, are often care coordinators and they provide untold hours of support. They need training, breaks, information and access to emergency back-up: the same things that paid professionals need to care safely and well, without damaging their own health.
  • Continuing to shift power to people, not just as individuals (eg Personal Health Budgets which shift control of money from services to individuals) but also as groups (eg people with Personal Health Budgets given the opportunity to link up, pool resources and feed into planning processes).

We are excited that Shared Lives, thanks to a £1.75m grant from NHS England, is going to be one way of showing people that these cultural shifts can be practical, affordable initiatives that will help people live well, enable others to contribute their skills in a very human way, achieve better health outcomes and save money. £1m of funding and additional expert support is being made available to Clinical Commissioning Groups (CCGs) to enable:

Because Shared Lives carers are trained and paid, but not by the hour, doing much for which they expect no payment and involving their family and friends informally, Shared Lives is able to combine the best features of paid and unpaid support: the formal and informal, professional and personal. This way of working can’t be forced, but it can be facilitated: the matching process ensures that everyone involved makes a positive choice to spend time with each other, rather than being assigned or placed. As a nurse who is now a Shared Lives carer put it: “I can still use my nursing skills but there aren’t the same power structures and bureaucracy in my kitchen as there are in the hospital.”

The shift in power and the cultural change cannot be separated. The experience of doing things so very differently changes the lives and thinking of everyone involved, commissioners, people using support, managers, Shared Lives carers and even their kids. But it’s achievable, scaleable, affordable and most of all, it’s happening right now, in an ordinary-looking family home not far from you. As strategic partners of the NHS England Integrated Personal Commissioning programme, we will be spreading this new way of doing and thinking nationally with lots of NHS organisations.

Many people fear big changes in the NHS. They think of iconic hospital buildings closing. The values of the NHS being erased for the profit motive of faceless private sector multi-nationals. This change is happening in small places, but those small places are everywhere.

Latest Shared Lives news

Cathy Newman of Channel 4 News met a Shared Lives household: https://www.youtube.com/watch?v=wb_DyYvE9zE

Our £1.75m partnership with NHS England has been launched with funding awarded to five areas and their Clinical Commissioning Groups to develop Shared Lives as a form of healthcare.

The Shared Lives Incubator social investment programme developed in partnership with Social Finance and Community Catalysts is investing in Shared Lives in three areas.

A shared life is a healthier life

Over 200 Shared Lives carers took the time to tell us about the difference they make to people’s health, for a proposal we are developing to get Shared Lives established in the healthcare sector. 73% said they had received positive feedback from an NHS colleague about the difference their support was making to an individual’s health, such as:

  • The GP stated that my care was remarkable and hoped I would continue to support this person.
  • I offer respite care to someone with bi-polar disorder. The CPN noted that staying with me when she has been in a depressive state has meant not having more formal support from the mental health team.
  • He has been her dentist for 40 yrs and has never seen an improvement until she came to live in Shared Lives.
  • The Mental health nurse reported that the person concerned was a changed woman: more confident and happy. The nurse said that she thought it was wonderful how this lady was able to voice her own opinions as she had never done this previously.
  • The nurse said “it’s obvious he is confident and comfortable with me as they have not been able to do this procedure successfully before”. We are very proud of him and his progress.

Here are some of the most common reported health outcomes. I fond some of them jaw-dropping: The person adopting healthier lifestyles, including dozens of accounts of significant weight loss, managing diabetes and giving up smoking

  • I am helping someone go to the gym twice a week as she is very overweight. She went by herself for the first time yesterday
  • Took a very obese service user to Slimming World. Helped her with her diet, and she lost 6 stone while with us.
  • Diabetes controlled through diet rather than medication. Weight loss through exercise and healthy eating.
  • One lady has lost 5 stones in weight in 5 years. Her BMI is perfect and she has much more energy to enjoy things she loves doing like dancing. One man has been supported with physiotherapy and orthotic shoes to help with pain management and posture, he used a wheelchair to visit shops. He does not need to use a wheelchair any more.
  • Both our long term residents have now been discharged from Asthma clinics and have lost 4 and a half stone between them
  • I helped achieve his aim of giving up smoking after he had smoked for 40 years

Tackling misdiagnoses and making reductions in unnecessary medications

  • When S came to us she was on a lot of medication. I asked the doctor if we could review it and she came off 3 different medications and she is much more awake.
  • She had been on epilepsy medication for 30 years before she came to us for no obvious reason. She has no seizures.
  • They thought she was deaf until I investigated further and found she hadn’t had her ears syringed for over 5yrs. Easily sorted out by visit to Practice nurse at GP and her hearing is fine now.
  • This person was in a wheelchair due to being over-medicated, because his doctors thought he was very severely epileptic, and subsequently massively over-medicated. We found out that most of his “seizures” were behavioural, and they gradually reduced his epilepsy meds. From having around 4 “seizures” per day, he hasn’t had any for 12 months. He now walks and attends college. The GP stated that this was directly attributable to care we had put in place.

Improved health and wellbeing leading to reduction in use of NHS services

  • The gentleman who is with us has now finished 6 monthly hospital visits and just sees the nurse once a year.
  • All of the people we support have been signed off from community support nursing because their conditions are being kept monitored and controlled while in our care.
  • Neither gentlemen have needed A&E whereas under their previous arrangement, they’d used it 4 times in 2yrs.
  • One gentleman was admitted to hospital about once a month, but not at all whilst living with us

Serious illnesses which had gone undiagnosed, including several instances of cancer, being diagnosed and treated

  • Alerted GP to early cancer symptoms
  • The cancer patient received treatment “just in time!”
  • One person had prostate cancer. We recognized the symptoms (that he must have had prior to moving in with us!) we supported him throughout all his treatment and getting to and from hospital.

Continue reading

It’s ‘voluntary’ but not optional

I’m re-blogging the post below from http://www.voluntarysectorhealthcare.org.uk/vcse-review/ which is the website for a review of investment in the voluntary, community and social enterprise (VCSE) sector which I’m chairing on behalf of a group of VCSE organisations and the Department of Health, NHS England and Public Health England. The review is based on the view set out in all of those bodies’ strategies and visions for the kind of enabling, collaborative and community-based approach to achieving health and wellbeing which could only be achieved with a thriving and valued VCSE sector. In other words, a sector which might be known as ‘voluntary’, but which cannot be seen as optional:

Having been asked to Chair this review of the voluntary, community and social enterprise sector, I’ve been more thinking than normal about what kind of VCSE sector we want and what kinds of relationships national and local health and care bodies should have with it. For me personally (and in this blog you’re going to find the personal views of advisory group members, not any ‘official’ lines), the real question here is what kind of health and care system do we want in this country?

If we want the same kind of health and care system we’ve always had, then we need a VCSE sector which gets better at delivering on public service contracts, and provides a steady supply of volunteers to help out alongside professionals. Nothing wrong with those goals, but actually I think we need a very different kind of health and care system, and the national health and care strategies all read as visions for something very different, not just a more efficient version of what we’ve always aimed at. This means a different view of what charities, community groups and social enterprises are there for, and how their contribution should be supported and valued.

If the challenges of 1948 were our major challenges now, the health system would be well able to meet them. But our key challenge now is that health and care is not used by only a relatively small number of people for a relatively short time. A quarter of the population now lives with a long term condition and many of those with several long term conditions. Living well with a long term condition, avoiding health and other crises, is not something even a great service and the most expert professionals can do for us, it is something which is only achievable when people with long term conditions, family carers, communities and professionals work together, each making their own kind of contribution, sharing information and expertise, and backing each other up when things get tough. Living well requires joined-up health, care and housing interventions, but also services which can join up with informal action and arrange themselves around our real, messy, lives.

Charities, community groups and social enterprises can do many things well, from delivering huge public service contracts to running campaigns which change the national conversation, but Continue reading