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.

A Shared Life is a Healthy Life

It’s been a busy Shared Lives week, with local Shared Lives schemes holding events all over the country. The highlight for us was our parliamentary reception, hosted by former charities Minister, Nick Hurd MP, at which Luciana Berger MP (Shadow Mental Health Minister) also spoke, along with Cllr Richard Kemp (LGA Lib Dem Spokesperson on Health and Social Care), Chief Inspector of Social Care Andrea Sutcliffe and two of our new Ambassadors, Dipan and Paul. We launched this new report on the impact of Shared Lives on people’s health, with a foreword by NHSE CEO, Simon Stevens and a new short film on the same subject, featuring Pauline, Joe, Karen and Robert, who spoke afterwards about what Shared Lives means to them.

Sally Percival, a parent and co-Chair of Think Local, Act Personal, who was one of a number of TLAP colleagues at the event, said:

Talking to the Shared Lives carers and even more importantly listening to the people who live in Shared Lives homes share their positive stories of happiness, fun and personal growth made me believe that as precious as my children are, this is the type of home-from-home living that we would consider right for them. That has never happened before and gives me hope for the future. Before learning about Shared Lives, I just assumed they would be living with us forever and that’s really not healthy for any of us.

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.

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Julie’s way of being

Julie, 44, has Down’s syndrome and lives in a Shared Lives arrangement with Pauline and Joe from Lancashire.  In her own words, Pauline talks about Julie’s dramatic weight loss.

“Julie came to live with me 6 years ago and she was overweight, a size 20+, she is 4ft 9’ and is now a slim size 12. Her mother, who has since died, used to give Julie finger foods and would put a towel around her neck, then Julie would go to her room every night at 6.30pm and she wouldn’t let her mum in the room. She now feels like this is her home, so she has come a long way and I also feel that she was in day services and I think they held her back.  They kept her using Makaton sign language and they said she would fall over all the time and I noticed it was because she had ill-fitting shoes on, so I got her shoes like trainers with Velcro and one thing and another and started getting her a bit more modern in the way she dressed and just spent more time on her.  I felt like people didn’t talk to her properly. So I sat her down and said ‘Right, do you want to be treated like a little girl or a woman?’ And it was one of the first times she spoke and she said ‘woman’ and I said ‘right, well, here goes’ and that was it!  I didn’t talk to her like a child and started to ask her questions instead of just telling her what to do;  like ‘what shoes would you like to wear today?’ and gave her choices instead.

Then we had a talk with her and got the learning disability team out – the health team, to talk to her about healthy food and slowly, it was a long drawn out process, we got her onto healthy eating and fruit juices etc., and not bingeing on party food and sausage rolls and pies.  But we noticed at times little packet of crisps and biscuits and things would go missing, but I didn’t mind at the time because it was something she had to do, she obviously did that when she was at home but what I did was I made sure there weren’t lots and lots of packets of crisps lying around.  I made sure she wasn’t eating too much junk food and that way she was able to do what she was used to doing and it is not called ‘pinching things’ it’s called ‘Julie’s way of being’. So everyone who comes to you, you have to see what they are used to doing and you have to understand their ways.  So Julie really started developing once she had built up a bond and she could trust me.

She loves herself now, she loves having her hair done – she has this lovely inverted bob, before they used to have her hair in rollers and she looked a lot older, you wouldn’t recognise her from old photographs.  She likes herself, she likes who she is.  I don’t think she liked herself before – she never looked at herself before.”

Making the right connections

My blog on taking an assets-based approach to healthcare reform, particularly where public health and other behaviour changes are required, is on here:

Simply improving the way we commission existing health services will not achieve what society really requires, says Alex Fox, chief executive of Shared Lives Plus. He argues for a more meaningful reform of social care to challenge the primacy of hospital-based treatment…..

Demand and supply

Here’s a third and final blog off the back of this week’s King’s Fund discussion about innovation in healthcare.

I’ve argued on a number of occasions that we have focused too much on trying to adjust demand within social care -by giving people personal budgets and Direct Payments with which they could, in theory, demand the service of their choice – at the expense of thinking about supply. Without developing diversity of supply, it turns out that people only have the same old choice of services to spend their personal budgets on, and that problem gets worse as supply organisations find it easier to compete on price than on personalisation of their offer and the market consolidates into fewer, larger organisations.

In conversation with colleagues in healthcare innovation, it was suggested that if social care’s innovation problem is that we focus too much on demand and not enough on supply, perhaps the main barrier to innovation in the NHS is focusing too much on supply – new contracts, payment by results, innovation in medicines and procedures – and not nearly enough about demand. We are all ‘patients’ and ‘consumers’ when we step into the realm of the NHS, which talks about things like increasing our level of ‘compliance’ with treatment regimes.

Could we bring together social care’s progress on thinking about demand, and the NHS’s progress on streamlining supply?

Eco-systems, not machines

Here’s another reflection arising from this week’s King’s Fund discussion about innovation in healthcare – they must have had good coffee.

Whenever we talk about innovation, ther e is a tendency for us to be talking about innovative interventions and projects – shiny new ways of doing a task, or shiny new bits of kit. Another way of thinking about innovation is to think of innovation in systems  – in the way that those tasks and bits of kit work together. A system can be innovative without any new tools. A system which is has all the new tools, but hasn’t worked out how to use them together,  can be chaotic rather than innovative. Sometimes getting rid of bits of kit which didn’t really turn out to add much value, actually improves things.  One way I heard this put recently was that we should be thinking about systems design in terms of developing a healthier eco-system,  rather than thinking up a more impressive machine.

Innovating out the humanity?

I was at the King’s Fund (health think tank) yesterday for a discussion about innovation in the NHS. It’s always interesting to be part of a discussion about healthcare. Partly because I am always the least knowledgeable person in the room when it comes to all kinds of crucial technical points – tariffs, CQUINs and all the other bits of jargon which bamboozle non-NHS folk like me. And partly because I never fail to be shocked by the difference between the cultures of the NHS and social care.

Both sectors talk constantly about the need for integration. And yet we can barely talk the same language. We don’t even appear to share all of the same goals.

An interesting point in Richard Bohmers’s opening presentation at the session, which was a review of innovation in the NHS, included a throwaway point which seemed to me worth some deep thought.

Richard noted that there are tensions in healthcare innovation – between for instance, trying to give people increasingly specialised responses, but also wanting to people to experience one, integrated NHS, not several different organisations. The tension he noted which struck a particular chord with me was the tension between greater efficiency, which can mean things like automated and hi-tech interventions, and our desire to be supported by people who care -in the common sense of the word – not just people who are efficient at caring tasks. Is innovation in the NHS antithetic to compassion? Have we innovated the caring out of the NHS? And if so, how do we make use of technology and whizzy systems thinking in health care provision, but also bring the humanity back in? Interested in your thoughts – a couple more ruminations from this discussion to follow later in the week.