Stepping into my own power

My colleague Meg Lewis is one of our Ambassadors, who has blogged about her experiences, interviewed NHS chief, Simon Stevens, speaks to national audiences (for instance, we are doing a double act on safeguarding for the DBS on March 12th), and contributes to our planning and thinking about improving the model. Meg and Nick Gordon from our communications team worked on this film, in which Meg reflects on her journey from hospital ward to shared lives, and now into her own place, which she shares with her dog, Flower. Meg went back to the psychiatric hospital where she lived for four years and talked with the clinicians about her journey: “I knew that I needed to feel a part of something and move away from clinical, boundaried care. Because those people do care, but when they go home they have to switch you off.” It’s a powerful and moving story about hope and, as Meg puts it, how to “step into your own power and change the course of your life.” Enjoy!

How would we know?

If an area becomes ‘asset-based’ in everything it does, how would you know? You would expect to see everyone – public services and charities; citizens and people with power – thinking, speaking and behaving differently. This is the second of three blogs written with the Chair of Think Local, Act Personal, Clenton Farquharson MBE, and available in full here. Last time, we revisited the Asset-Based Area (ABA) model which tried to distil down how an area can become asset-based in everything it does from strategy down to the grassroots, into ten actions, starting with mapping your local assets, and including sharing power with people who are usually excluded, and building a diverse range of community approaches which are now gathered in an online catalogue. Three years after the original thinking, we are developing the ABA model in more detail through the Social Care Innovation network.

In this blog, we want to think about how we would know that an area had become asset-based. What would we measure and how?

Greater Manchester has adopted use of system activity measures collected every quarter, combined with a range of personal outcome measures collected locally across the city region. These include measures already well-established across public services, such as health outcomes, measures of demand and cost, and wellbeing outcomes: recognising that wellbeing – living a good life in a good home and a welcoming community – is intertwined with more clinical outcomes.

Key Human Indicators

Many areas and organisations have Key Performance Indicators (KPIs). Perhaps every area needs Key Human Indicators. Are people achieving wellbeing? That usually means that people who need support are able to experience the right balance of independence and connection for them, which will change at different times in their lives. For workers and systems, KHIs will include warmth, kindness (as set out in Julia Unwin’s brilliant report) and dignity. Networks can be more important than bureaucratic service structures. In Shared Lives, friendships are seen as key indicators of wellbeing, so Shared Lives Plus’ national outcomes measuring tool asks participants how many friends they have and whether Shared Lives support is helping them make and sustain those connections, or getting in the way.

Read the rest of this blog on the Social Care Institute for Excellence website, in the Social Care Innovation Network’s minisite.

The idea of the Asset-Based Area

The Social Care Innovation Network is helping 15 local areas and a similar number of innovative organisations take innovative approaches to social care and support. We aim to provide answers to the challenge of scaling up primarily small, community-focused examples of innovation. It’s led by The Social Care Institute for Excellence; Think Local, Action Personal, and Shared Lives Plus. We are keen to encourage as many people as possible to contribute, share and benefit.

I’ve co-written three blogs with Clenton Farquharson who chairs TLAP (among other things) on the thinking behind the Innovation Network and the workstrand that Clenton and I are leading on, which is on The Asset-Based Area. This is our first blog (the full article is here):

The idea of the Asset-Based Area (ABA) started life as a blog and was co-produced with input from many people and organisations working in asset-based ways, from the Think Local Act Personal national network for practitioners and commissioners who share an interested in Building Community Capacity. So many areas are doing some community building or transformational stuff, but so few are trying to turn their community initiatives into core business. There is not enough ambition, partly because it’s hard to get past the apparent paradox that the good stuff often feels small and personal, whilst the challenges faced by public services feel huge.

We need whole areas to take up the challenge of becoming asset-based, resetting their relationships with local citizens, as Wigan council and a few others have attempted, with local priorities defined and put into a community plan which is built on local knowledge. So we tried to distil down how an area can become asset-based in everything it does from strategy down to the grassroots, into ten actions, starting with mapping your local assets, and including sharing power with people who are usually excluded, and building a diverse range of community approaches which are now gathered in an online catalogue.

Three years after the original thinking, we are developing the ABA model in more detail through the Social Care Innovation network, and revisiting this as a work in progress as we do. We’ve grouped the ten actions into three:

  • Co-production, partnership and power sharing: building & valuing community capacity and community organisations, tackling inequalities
  • A strategic approach: a clear story translated into shared outcomes, asset-based commissioning, grant-giving, and provider market development
  • Diversifying workforces & building local enterprise: investing in volunteers & social entrepreneurs, valuing lived experience, growing mutuals & co-ops

We are also taking this opportunity to look at where the model needs improving – and as ever we want this to be a joint effort so your views are very welcome.

One key area that the model does not say enough about is self-directed support. (Read the rest here).

 

See you in the New Year

At a time of year when many of us are focused on family events and our closest relationships – and when it can be most painful to lack those connections- this story from PossAbilities Shared Lives in the North West struck a chord with me:

‘Colin’ stays with his Shared Lives carer Molly a few times a year for short breaks, so when he asked her to help arrange his 40th Birthday party, it was quite a challenge, but Molly went all out to organise, food, music, invites and so on. Colin was overjoyed with the arrangements, but very disappointed when few guests turned up. Molly isn’t the giving up kind though, so she suggested they try again for his 41st. She rallied all his friends and work colleagues and kept contacting people until she was sure that lots would come this time. As a result, Colin enjoyed the best birthday party ever. Even better, he met his first girlfriend through this party: something he’d been dreaming of for many years.

That kind of life-changing event happens when you have someone on your side, who never gives up because they think of you as a friend or family member, not just a ‘service user’. Our challenge is to bring those kinds of relationships to thousands more people, through Shared Lives, Homeshare, and in 2020, new ways for people to share their homes and lives, and support each other.

It’s also lays down a challenge for the whole of social care: how do we move away from low-cost, low-longevity care and support ‘transactions’ between professionals and clients, and instead invest in caring relationships that people choose, that everyone contributes to, and that last the distance? This isn’t just a funding issue: parts of our sector have a 25% – 30% staff turnover rate, or services that lock people into the most expensive and least effective part of the system. There is a financial as well as a personal cost to those statistics; money which would be better spent recruiting the right people into the right roles and offering them the right combination of support and freedom to help people live good lives: independent but connected.

So as we look back at 2019 we are proud of the scale of our membership network’s achievements, reaching over 14,000 people:

  • In Wales there are over 1,100 people using Shared Lives – passing the 1,000 mark for the first time.
  • In Scotland the number of people using Shared Lives passed 500.
  • And the UK has over 1,000 Homeshare participants for the first time.

…and we’re proud of the quality and outcomes of that work: 98% good or outstanding from the latest CQC inspection figures, and nearly 90% of people completing our national outcomes tool saying that they are more socially connected through their Shared Lives support, as well as 83% saying it improved their physical health and 88% their emotional health.

We’re proud of the innovations we led this year including partnerships with:

And we’re also proud of how we approached our work: putting people with lived experience and front line workers in the lead wherever we can, such as our new Shared Lives Carer Champions, who are supporting other Shared Lives carers in their regions, who joined our Ambassadors with lived experience, to help us to reshape our work and do more on a peer-to-peer basis. We began to explore how to become a rights-based organisation with support from the British Institute of Human Rights and a domestic abuse aware organisation and team.

We’ve never had bigger challenges in social and health care, which means in 2020 we will need big ambitions when it comes to scale, results and the values we bring to our work. It’s not going to be an easy ride, but there are too many people who don’t have the lives, homes and relationships they dream of for us to give up, so I’ll be keeping Molly’s example in mind, whenever the coming year feels like a struggle!

I hope everyone enjoys a restful and well-earned break over Christmas and the New Year. We’ll see you in 2020.

Accelerating Ideas – working across the home nations

In this second blog of two about our , Alex Fox (CEO) and Anna McEwen (Executive Director of Support and Development) set out some of the lessons from Shared Lives Plus’ Accelerating Ideas UK development project, supported by Nesta and funded by the National Lottery Community Fund to develop Shared Lives and Homeshare across all four home nations.

There has been Shared Lives in all four home nations for many years, but our capacity to support the sector outside of England was limited, and a large majority of the 14,000 people using Shared Lives live in England. Welsh Government support has enabled us to address that gap in Wales for some years now, and Wales has full coverage and has started to grow in recent years. The Accelerating Ideas programme enabled us to bring our work to Scotland and Northern Ireland for the first time.

Over the past three years, Shared Lives in Scotland has grown healthily, rising to around 17%. Much has hinged on one or two ambitious and successful areas showing the potential. Moray’s Integrated Joint Board recently approved the transfer of 4- 8% of the learning disability budget into Shared Lives, because they had seen the success of the model for themselves as a day support. Now Edinburgh, Fife, and Falkirk are growing. East Lothian has plans to reach more older and young people in transition from care. Three new schemes are being established, two focused initially on people with learning disabilities and Dundee set up to support older people.

Conversely, where an area has no existing Shared Lives scheme, and leaders have no direct experience of it, winning hearts and minds takes significant work and success often requires a number of leaders to align at the same moment: in one area we spent years working with people supporting carers, disability champions, the Health board and potential providers of the new service to co-design it. Re-structuring left only two of five relevant senior leaders in post, so that process had to start again and is only gaining momentum again a year later.

In Northern Ireland, the sector had remained very small for years, with awareness low, little senior leadership attention, recruitment difficult and mixed views on development and diversification to reach new groups. Ironically, it was following the collapse of the Northern Ireland assembly, which put many areas of public service reform on hold along with the cross-party support for Shared Lives which we had worked so hard on, that a Shared Lives expansion project led by the Health & Social Care Board was established in July 2018 with £270,000 of non-recurrent funding, with funding made available to all five NI Health & Social Care Trusts for Shared Lives posts. The challenge now is to convert that investment into capacity, recruitment and impact on people’s lives.

A clear lesson from our experiences of working in all four nations is that each nation has to own its own development programme, based around senior staff who are embedded into the national policymaking and practice community. When resources are very limited, we have in the past prioritised direct support for local organisations. That has welcome impact on the ground, but that member-facing work doesn’t necessarily raise the sector’s profile and political support, or lead to longer-term investment. The approach of investing in strategic posts who can build profile, support and evidence feels like the only route towards lasting growth, as the new resources we have attracted in Northern Ireland and Scotland suggests. After years of almost all the growth being concentrated in England, we are now seeing growth which is genuinely UK-wide, with each nation able to learn from the others, as you can see from this story from Moray Shared Lives, which has pioneered dementia support.

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.

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.