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.

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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Attendance Allowance as key to early intervention?

I’m grateful to Simon Bottery from Independent Age for a reminder of a suggestion which was being made in the run up to the last Green Paper (or was it the one before?!) that the key to targeting early intervention effectively for older people is simple. There are 1.3m older people receiving £5bn of Attendance Allowance. They have been assessed as needing low level support and their AA is intended to be a bit like a small personal budget for prevention. Once they receive the money, that’s it. No link from the DWP’s assessment processes to their local council of voluntary sector, let alone a linked offer of support to plan for crises, strengthen families, or build resilience. AA is cheap for DWP to run and it’s non-intrusive for recipients. But whilst recipients may choose to buy support of some kind with their AA and almost certainly appreciate getting it, it’s hard to find evidence that AA as currently delivered makes a significant positive difference to their resilience or the risk of loss of independence.

So it would be wrong to introduce new bureaucracy or even worse, labyrinthine shared IT systems. But is it inconceivable that the AA process could involve an invitation to give permission to share contact details with agencies able to help, with the DWP and councils working together to offer people in that group who wanted it access to a little support? With some of our partner agencies we’ve argued for some time for a more open-door approach to the ‘front end’ of social care, with people able to get support which doesn’t speed them into ‘service land’ but does help them to plan and lower their risk of increasing dependence. Amongst older people, many of the people for whom that kind of support would be most relevant will be AA recipients.

Ditch ‘prevention’!

This is the last blog in a series inspired by a seminar with social care leaders which looked at the question of citizen and community-led change.

It became clear early on in the discussion that some people had arrived expecting a debate about ‘social capital’ and community development, whilst others had been expecting a debate about early intervention and prevention. Personally, I believe that both of those concepts do, or should, mean much the same thing. Put another way, soon after I agreed to become the ‘co-lead’ on prevention and early intervention for the social care White Paper, I decided that given the choice, I’d drop the language of prevention and early intervention entirely and replace it with the language of well-being, empowerment and citizen-leadership.

Sue Bott of Disability Rights UK reacted to talk of prevention like this: “People who use services don’t want to be divided into the fixable and the not-fixable”. The problem is that prevention is all about people’s problems (will you be a drain on resources?) whereas the things ‘preventative services’ wish to achieve, are best achieved by focusing on people’s gifts, skills and assets.

‘Early intervention’ is just as bad: if the territory of ‘prevention’ is all about tackling isolation, helping people to connect and empowerment, those are outcomes which are just as relevant to the person who has just started to become less mobile in later life, the person with a life-long physical impairment or the person at the end of their life. No one wants to be lonely: whatever else is going on in your life, being lonely is miserable and worse for you than smoking.

So I think it’s time to move on from thinking about how to save money through reducing NHS admissions, which might involve coming up with wheezes which simply transfer the cost to social care, and instead think whole-person and whole-community. People will always need specialist responses and hopefully those responses will continue to become more coordinated, skilled and efficient. But the real gains will come when all services, whether they are used by people with ‘low level’ or ‘high level’ needs, think beyond meeting the present need and towards increasing the likelihood that the individual – and often their community – will be more knowledgeable, networked and confident in future.

If we can get that right, not only will more people be able to live a good life, with fewer trapped in a cycle of dependence and ‘revolving door’ use of crisis services, but savings generated will be more likely to be real, and to the public purse as a whole, not just to one sector or another.