Accelerating Ideas – shaping local systems

In two blogs, I and my colleague Anna McEwen will reflect on what we achieved, struggled with, and learned around two of the main objectives of our recently completed Accelerating Ideas UK development project, supported by Nesta and funded by the National Lottery Community Fund.

• establishing a new strategic advice arm and supporting commissioners to start and expand Shared Lives and Homeshare services
• establishing our work in all four UK nations, building on our success and government support in England and Wales

We wanted to develop a strategic advice business for two main reasons: to help local leaders to work with their  provider organisations to improve and grow Shared Lives, Homeshare and other personalised models, and to bring us a sustainable source of income so that we rely less on grant funding.

This work started to in earnest in 2017-18 and accelerated rapidly: nearly 70 contracts to date, including work with Australia’s changing disability support service and in British Columbia. A typical example is the Shared Lives service review for Bridgend Council which included an evaluation and analysis of Shared Lives in Bridgend, and a comprehensive business case and options appraisal looking at externalised and in-house delivery, working with other localities, and growing the scheme. A key aspect of our work is the work of the team of people with lived experience and their Shared Lives carers, who carry out peer-to-peer research, alongside colleagues who look at practice, use of resources and compliance, to produce a rounded picture of what a local service does, its outcomes, but also how it feels to the people who actually use and deliver it.

One of our largest projects has been with Greater Manchester Health and Social Care Partnership (GMHSCP) to develop and implement an ambitious five year plan for an additional 600 people using Shared Lives, across Greater Manchester. Jo Chilton, Programme Director, Adult Social Care Transformation Programme said, “Greater Manchester has high ambitions for scaling up Shared Lives but we want to ensure that people currently involved in Shared Lives and those who may wish to be supported in Shared Lives in future, help assess how ready we are to do more, and what would need to happen to make our ambition a reality. Our partnership with Shared Lives Plus is vital to getting this right from the start.” This included a detailed evaluation of five of the ten Shared Lives schemes using a combination of scheme health checks and data analysis. The city region is investing and working towards the UK’s most ambitious goal to date, of  15% of people who have a learning disability and use social care to be using Shared Lives.

Our main challenge has not been winning work, it has been expanding our delivery capacity to keep pace with demand. We use a small number of associates for specialist tasks, but a lot of the delivery has been in-house, and the expansion of our capacity off the back of demand for support, rather than through grant-funded expansion, is one of a number of culture changes for our team: we have needed to be willing to take some different kinds of risk to expand. We tailor our work to the local places we are working in, rather than around a bid submitted to a grant maker.  In changing our model, we were focused on remaining true to our values and serving our members, who are 6,000 Shared Lives carers and 170 local organisations. The key to this has been to develop an offer which is shaped by our values and coproduction approach, and marketing this and our unique place as the only national Shared Lives and Homeshare organisation, not as extra cost or time, but as the best reason to work with us: after all, what would be the purpose in expanding the most personalised support approaches, if you didn’t pursue that expansion in a personalised way?

Some of the impacts of this are more expected than others. We have long understood the need to get local areas to invest in development work, if they are to value it, so we hoped to see the buy-in we have achieved through contracted work, but one risk we identified was that it might make our campaigning work harder, around issues like Shared Lives carer pay, for instance. In fact, embedding the practice of coproduction with Shared Lives carers, and developing closer relationships with local leaders, has in some areas made it easier to raise issues around valuing supporting – and paying – Shared Lives carers, rather than harder.

It’s not all been plain sailing, of course. All the advisors who helped us develop this business talked about the risks of under-valuing and under-pricing our work, over-promising, and under-estimating the time needed for work. We thought we’d understood that advice, but we did all of those things and had to learn the hard way. This has increased pressure on our team at times. We’ve coped with those challenges though and this new way of working has not only given us a more sustainable future as a charity, it’s brought a level of learning and insight which we could not have achieved in any other way.

Launch day

After four years of writing, editing and re-editing, my book is finally published today, and launches in London thanks to the generosity of Nesta who are hosting the event, at which NHS CEO Simon Stevens is also speaking. We’re going to lose some out of town attendees to the snow, but so far London’s transport system seems to be holding up fine and we’re going ahead. If you are not able to be there, there will be a live stream from just before 6pm on this page of the Nesta website. The stream will then stay on that page. Here is the beginning of my blog on the Policy Press website about the book:

The NHS was designed in the 1940s for brief encounters: healing us or fixing us up. It often does that astonishingly well. But now 15 million of us (most of us at some point during our lives) live with long-term conditions; three million with multiple long-term conditions. We cannot be healed or fixed, we can only live well, drawing on state support relatively little, or live badly, drawing on state support heavily and falling repeatedly into crisis. That long term, increasing reliance on intensive support services is not only likely to feel miserable to us as individuals and families, it drives long term financial meltdown which will bankrupt our service economies, even if they survive the current period of austerity.

So we need a different relationship between people with long term conditions, their families and the services they turn to for help. But health and care leaders continue to talk and plan as if the health and care system was fixable by streamlining what we currently do, integrating various kinds of organisation, or making better use of tech. This is because, whether we use public services, work in them, or lead them, we remain locked into seeing people who need support as illnesses, impairments, problems, risks, not as people who can and must share at least some of the responsibility for their own wellbeing. We do not recognise that people who live for years or decades can become more expert in what works for their wellbeing than many of the professionals who necessarily dip in and out of their lives. Family carers provide more care than the state, but even they are not recognised as vital members of a wider caring team, who might need knowledge, training, equipment and emergency back up just as much as their paid colleagues.

To unpick this [carry on reading the blog and also Edward’s Shared Lives story here].

Realising the Value

Nesta and their partners have published How should we think about value in health and care? as part of their Realising the Value project. My blog in response is here and reblogged below:

In the report, a number of strong arguments are set out for a new way of thinking about value in our public services which goes beyond consideration only of short-term symptom relief, taking into consideration the value created by people, services and communities working together. The paper recognises that this will involve finding out what kinds of value mean most to people, not just to services. This is, in my view, exactly the shift we need and it would bring with it some profound consequences.

Health is about more than buildings, staff, kit and drugs

Many of our ideas about value in health and care do not even get as far as consideration of outcomes, however narrowly and medically defined. We still behave as if the value of the NHS can be expressed in buildings, staff, kit and drugs and we reward those people and services which control the greatest quantities of those resources with the greatest budgets, salaries and ultimately power. It is not in the interests of large organisations, and those running them, to recognise the limitations of the value they are able to add to people’s lives, nor the often much greater value of the invisible economy of unpaid family care and social action. To do so would imply not just our existing institutions behaving in different ways, but some of them being phased out and their resources transferred directly to the families, communities and social enterprises best placed to define and achieve what a good life looks like to an individual with a long term condition, and to help them pursue that life.

Previously I have argued that all public services should be challenged to achieve what I am tentatively calling ‘the connection test’: alongside the relevant health, wellbeing, housing, reoffending (and so on) outcomes, to what extent does your intervention connect people to those around them? And conversely to what extent does it block or sever their connections? A service which can deliver on its core outcomes whilst maximising an individual’s connections to others, and minimising unintended disruptions in those connections, is better value for money than a service which only achieves narrow or clinical outcomes. So let’s insist that every intervention measures its positive – and negative – impacts upon people’s informal support network.

A person is more than a collection of needs to be met

Why measure ‘connection’ (and disconnection) specifically? In my view, it is one of the most telling indicators of an individual’s present wellbeing and future resilience. It is a proxy for a range of other wellbeing outcomes, such as active citizenship, full and sustainable family life, employment and so on. The extent to which a service measures and maximises an individual’s connections to others is also a good indication of the extent to which it recognises that an individual does not exist in a vacuum and is more than a collection of needs to be met.

This perhaps points towards an aspect of the arguments put in the paper which I would pursue more strongly, which is applications of asset-based or capabilities-based thinking to thinking about value. This way of thinking, developed by the Asset Based Community Development movement and others, points out that if all you look for in an individual, family or community, is need, that is all you will find and you will always conclude that an outside agency or expert is needed to fix them. It suggests that anyone offering support should always look first

It’s hard to know what good is when you have not had it

We held our first ever parliamentary event this week. Our host was Liz Kendall MP, the Shadow Care Minister, who made the Shared Lives carers and people using Shared Lives feel at home and spoke passionately about her support for Shared Lives carers in Leicester and nationally. Liz said, ‘I urge all MPs to investigate Shared Lives in your area and make a difference locally. This is about love, chance, family and choices. The things we all want.’ Care Minister Norman Lamb also spoke passionately about how Shared Lives can change lives and talked about how struck he was when he came into office by the ‘stark contrast’ between the Shared Lives he saw in action and institutional approaches, which had gone so terribly wrong at the Winterbourne View special hospital shortly before he took up his post. Nick Hurd MP, a previous Minister for Civil Society at the Cabinet Office, kicked off the event and introduced our new Shared Lives film, which was originally commissioned by the Cabinet Office and charity, Nesta, for their Centre for Social Action. You can watch it here: http://vimeo.com/108993357

16 MPs came to support us and meet their constituents who were involved in Shared Lives, which was great to see, but the highlight for everyone was hearing from Joanne, Ayeesha and Clare, three talented young women who live with Shared Lives carers Graham and Lorna in a household featured in the film. Clare kindly let us take pictures of the text of her speech which you can see below. Here is what she said:

Hello my name is Clare and I want to tell you about my life with Joanne + Ayeesha + Lorna + Graham + J.J. He’s our dog. It’s a good life.

My life did not used to be a good life.

My life was a disaster before I moved in.

I’m not going to tell you why, that is personal.

It got better when I moved in to Shared Lives.

It got better when I met Lorna and Graham. I was a bit shy at first. It was hard sometimes because I got a bit homesick.

I did not know what Shared Lives was. Not everyone does.

It’s hard to know what good is when you have not had it.

More people need to know about Shared Lives.

They need to know it is not about being stuck in a flat on your own.

It is not about being lonely.

It is about family.

It is about having choices.

It is just lovely.

It is a good life.

My message to you is that everyone should be able to have a good life.

Everyone should have the choice.

Lots of people like me are just told about living in flats.

They be told about Shared Lives.

They should be able to see it.

They should be able to try it.

They should be able to live it.

Everyone should have the chance to have a good life.

Shared Lives: a Big Grant & time to become a movement

We are feeling extra-festive at the moment, because we are lucky enough to be announcing that Shared Lives Plus has been awarded £1.4m by the Big Lottery Fund, alongside £350k by the Cabinet Office and Nesta, to help us achieve our ambition to see the number of people offered family-based Shared Lives double in England over five years. Shared Lives carers share their own home and family life with an older or disabled person, as an alternative to traditional care services.

A great example of what this feels like can be found here, in the account of Leeds-based Mary Crawford’s 23 years as a Shared Lives carer with council’s Short Breaks scheme: “Family was so important to Mary that she wanted others to experience the same love and support that she did. It wasn’t only Mary who got involved, the rest of the family did too! Her children Bridget, David, and Joan remember vividly those who stayed with them.  To them the experience added to what being a family meant.  Their family included each other, whoever was stopping with them at the time and even the chickens and a goat!  They had regular weekend visitors and some who stayed for months and even years and many of them are still in touch to this day. Bridget said: “Mum has plenty of love in her heart to go round – there was no limit; there was enough for us and anyone staying with us.””

10,000 people in England currently benefit from Shared Lives arrangements, many of whom say they feel less isolated, make real friendships and participate more in community life as a result. If we succeed with plans to double the number of people living in Shared Lives households, this will also result in real savings of over £50m per year to councils and the NHS, because Shared Lives has been demonstrated to cost much less than equivalent care for key groups.

Almost every area already has a small Shared Lives scheme, but few people know they exist, so many are under-used. The majority of people using Shared Lives arrangements are people with learning disabilities – however Shared Lives is often also used to support older people with dementia, people with mental health problems, young people and others. The plans to expand are to grow demand for Shared Lives through awareness-raising and to grow the supply of Shared Lives through building learning, resources and peer support and through a programme of social investment in local schemes. We will be protecting and strengthening the values and ethos of Shared Lives throughout this period, including through helping Shared Lives carers and people who use Shared Lives and their families to have their voices heard by local planners. And we will be building an outcome measuring approach and exploring a Quality Mark.

We hope you will join us in working with the 152 local schemes and c8,0000 Shared Lives carers to build the emerging Shared Lives movement into something which fundamentally changes people’s views on what is possible in care and support.

http://sharedlivesplus.invisionzone.com/index.php?/topic/592-shared-lives-plus-wins-big-lottery-fund-and-nesta-grants-to-double-number-of-people-in-shared-lives/

Better than we have ever known

I took part in a panel at a NESTA event yesterday, for finalists in two of their Innovation in Giving prizes, one for innovation in tackling the challenges facing older people and the other for innovation in tackling waste in the food industry.

As usual in a room full of entrepreneurs, I felt inadequate to give advice. I’ve huge respect for anyone who is willing to take an idea and base their lives – and livelihood – around making it happen. I’m envious of their confidence and of the rewards which can come when you are willing to take that kind of risk and cope with living with doubt and uncertainty whilst you are on that journey. The Cabinet Office Minister Nick Hurd was also on the panel, having launched a new programme for social action with NESTA last week.

I spoke on innovation in ageing and suggested that innovation is needed to fix three problems:

• the formal care systems being cut to the bone and cannot in any case fix isolation, loneliness and exclusion
• informal care is becoming less sustainable, with people who support each other under increasing pressure
• the relationship between these two systems is dysfunctional.

So the innovations needed to fix our broken care system may also involve fixing something broken in our communities. I argued that  whilst we hear much about the need to integrate different kinds of service, we must go further, integrating and aligning service responses with the contributions people with long term conditions want to make themselves and with the informal, unpaid caring provided by their families, friends and communities.

Innovation in ageing was also the subject of a major NESTA report launched yesterday, called Five Hours a Day, in reference to the fact that life expectancy is increasing at a rate of five hours a day. This is often seen a massive problem, but the NESTA report shows how it can also be a massive strength and source of innovation. Shared Lives and Homeshare feature in the report, as does the work of our colleagues at Tyze (www.tyze.org) who we are supporting to bring Tyze Personal Networks to the UK.

The NESTA report highlights five aspects of systemic change:

• Social places: mobilising vibrant, socially–engaged neighbourhoods.
• People powered health: bringing the social into the medical.
• Purposeful work: new employment models for the second half of life.
• Plan for life: creating a sense of opportunity about the second half of life.
• Living room: enabling older people to live where they want with friendships and support.

The report is full of examples of what’s already happening around the world to make those changes. Its message is very well summed up by this great quote from Psychologist, Dr. Laura Carstensen:

“Societies with millions of talented, emotionally stable (older) citizens who are healthier and better educated than any generations before them, armed with knowledge of the practical matters of life, and motivated to solve the big issues; can be better societies than we have ever known.”

The report is here: http://www.nesta.org.uk/home1/assets/features/five_hours_a_day