‘Sarah is part of my family’

You can now watch our new film about how people with mental ill health use Shared Lives to recover:  two minute version and seven minute version. 

mental health film

Meanwhile, The Guardian shared some great Shared Lives stories in its feature on becoming a Shared Lives carer: 

One Shared Lives carer said of the woman with autism who came to live with her: “She didn’t want to leave the house and she didn’t really speak. Now she’s becoming much more independent, she walks everywhere and is always out and about.”

In Stafford, Chris Goodall was part of the Shared Lives and offenders scheme. An 18-year-old with a learning disability came to live with him after being released from youth custody, instead of going into an adult prison. “This was of course a better option for him,” Goodall says. “For the first three months, he was tagged and had an asbo and a curfew. But he stuck to it and the tag came off in due course. We got him a place at the nearby college and he received a certificate for 100% attendance in the first year.”

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All health and care commissioners should demand social value

This is my blog to support the launch of the Joint VCSE Review’s new action plan. I have also written a piece for HSJ with Glen Garrod of ADASS and Rob Webster of South West Yorkshire Partnership NHS Trust.

“We welcome the new action plan from the Joint VCSE Review, which has set out an important vision in which voluntary, community and social enterprise organisations work with the NHS to co-design and co-deliver health and care services with local people. The action plan has a strong focus on greater use of Social Value Act powers by health and care commissioners which enables commissioners to seek added social value from local providers and more value for public money in partnership with charits and community groups. Use of the Act should be more routine in health commissioning.”

Simon Stevens, CEO, NHS England.

What do voluntary, community and social enterprise (VCSE) organisations want from government and the NHS? Ask our statutory partners and many will say, “money” and then add “but we don’t have any!” The first part of that is true, of course. The VCSE sector can often manage with less money than other kinds of organisation, because it is often better at drawing on different kinds of resources as well: people’s freely given time, support from local community and businesses, use of community resources. But all organisations working in health and social care, whether statutory, private or not for profit, need money to run. The difference between statutory and voluntary organisations is not their need for money, it is that typically statutory organisations control that money, and VCSE organisations do not.

Two years ago the Joint VCSE Review held a full consultation with the VCSE sector and its partners, and produced a report and 28 recommendations based on what we found. We heard that VCSE did not want to be in the position of asking for money: they wanted to share responsibility for the resources available, and to help people who use public services to share that responsibility. When statutory organisations and commissioners say ‘there’s no money!’ they have often started with the assumption that they must keep spending the money they have on what they already do. Local people, particularly from groups and communities who are not well-served by current services, can take a different view, if they have the opportunity to take part in genuine decision-making (as opposed to being ‘engaged’ and ‘consulted’ by decision-makers reluctant to give up any real power). So our key message was that, if we are serious about community-based, community-owned health and care services, which both expect and ask more of citizens, we need to get serious about co-designing those services with the people who make most use of them. VCSE organisations are the only ones with any track record of doing that. The fact that co-design and coproduction are still seen as slow, difficult and optional, rather than essential to improvement and tackling inequalities, is a good indicator of how much current commissioning teams need their voluntary counterparts and the communities they reach.

King’s Fund research commissioned in response to the Joint Review found a clear distinction between commissioners who co-commission and those who see their VCSE partners as there to provide the services designed without their input. So our new action plan’s three actions include co-design becoming a core expectation, with commissioners recognising that some of their scarce resources could usefully be invested in user-led and grassroots groups which are their only viable routes to the people with whom they need to co-design the future. As areas start to co-design in that way, as pioneers like Greater Manchester are already doing, they are hearing a clear demand for health and social care services which help people to live well and to remain independent and resilient in the face of long term health conditions, so our other two actions are to embed wellbeing as a shared goal for health and care services, and to enable local leaders to commission, demand and pay for wellbeing and resilience. We heard from the sector about the need for tools to be freely available to small local organisations, not just to large organisations with research and evaluation budgets. And we were excited by the promising examples of social prescribing and other approaches which, when done well, enable commissioners to work with intermediary local bodies to get their resources effectively to the full range of VCSE organisations. We argued in our original report that fund should always be on a ‘simplest by default’ basis, avoiding expensive, time-consuming and overly bureaucratic processes which are often evidence of a lack of understanding of what the VCSE can bring, rather than reflections of any real regulatory imperative.

Our action plan, which has been adopted by the Health and Wellbeing Alliance, is an attempt to bridge the statutory and voluntary worlds. That bridge will enable people to travel more freely between their lives at home in the community and the world of service support which can too often be inaccessible. One tangible way to bridge between the values of the VCSE sector and what the statutory sector will place a value on, would be to use routinely the existing Social Value Act powers, which allow commissioners to demand social value such as use of volunteers, or employment of people with lived experience, from all of their contracts. Jon Rouse says, “The Greater Manchester Health and Social Care Partnership based our working relationship with the voluntary, community and social enterprise (VCSE) sector on the recommendations from the Joint VCSE Review, which included that statutory and voluntary agencies should work together with local people to co-design better health and care services. We welcome the new VCSE action plan and expect to lead the way in using the Social Value Act powers routinely in our health and care contracting, to get the best value possible from public funds.”

Bridging between those two worlds means building from both sides, so I want to end with a challenge to my own sector. It’s not enough for us to talk about our community roots: we need to demonstrate that they are still strong and healthy. If we are to share in the power that goes with co-owning health and care systems and their resources, we must also be willing to share responsibility. The inequality of our current public services, and their outcomes, was the strongest message we heard during our consultation. As voluntary, community and social enterprise organisations we need to look hard at our practices and the way we make decisions ourselves, to be sure that we are part of the solution to that injustice.

Join us for the launch of the new VCSE action plan

When we launched the recommendations from the Joint Review of the Voluntary Community and Social Enterprise (VCSE) sector’s role in the health and care system, after a wide consultation with the sector,  we made recommendations for national and local government, NHS and VCSE organisations on how our sector and statutory health and social care agencies can work effectively together. Much has changed since then, including the progress we have achieved on some of our recommendations such as the establishment of the Health and Wellbeing Alliance which is a group of charities which help government to design better health and care policy, and which form a link between government and thousands of local groups. But there is still much to do, particularly to persuade statutory organisations to work with VCSE organisations as partners in co-designing better systems and services with the often excluded citizens and communities which good VCSE organisations reach.

So we are relaunching around a slimmed down set of what feel like the most impactful actions. I will be joined by ADASS President Glen Garrod and NHS England director Neil Churchill for a free public webinar on 16th May, between 3:30 – 4:30pm. We will set out the three key actions we think we need to take going forward, with a chance to ask questions and have your say.

The webinar is aimed at statutory organisations, the VCSE sector, commissioners and other health and care organisations. To join us, click here and follow on screen instructions.

 

To join this webinar, click here and follow on screen instructions.

The more I do for people the better life is for me.

This guest blog is the speech that my colleague Michael, one of our Ambassadors who has lived experience of using Shared Lives, gave to the School for Social Care Research conference with two other Ambassadors, James and Paul. The speech is about what being a peer researcher meant to him, but Michael also says something we should all listen to, about the value of his work to him and those he works with. Thanks Michael!

Hello I’m Michael

I am Shared Lives ambassador for Shared Lives Plus and I have been working as a peer researcher with the University of Kent.

The research project is about finding out what people who live with Shared Lives carers think about the support they get.

My colleagues James and Paul have talked about what we did and how we did it. I would like to talk about how the project has affected me personally.

When I went to do the first interview with two people and their carer I was having a really tough time personally.

Doing the interview gave me such a lift. I can’t describe how wonderful it felt. You are all probably used to it.

I think it is easy to forget how people you work with can help to cheer you up. Just going to work can make you feel so good about yourself.

I think this might depend on the job though.

I have loved everything about this work. The travelling has helped me become more independent now, this feels good to be honest.  I can do a bit more now and I don’t have to rely on anyone. When I go somewhere with other staff members I can show them what to do.

I can do this because I am confident. I am not worrying because I know exactly what to do.

In the past I would have been anxious – worried.  I think I would have been worked up. Not sure how to describe this.

I think if you want to involve people and really involve people so they are doing a proper job same as everyone in the team you have to do certain things such as:

You have to give people time

You have to be organised.

You have to be easy to contact.

You have to get back to people quickly.

You have to do what you say you will do.

Most important is that you really believe in what we are doing and that you give us chances.

As we find out we can do something, we get more confident and we want to do more, then you need to ask us to do more so we can keep on  growing.

The more I have done the more better I have felt. The more I do for people the better life is for me. I think I am more better at helping other people than myself.

From doing this I have learned that to look after myself and to look after my feelings the type of work I need to do is all about helping other people to make their lives better. This helps me to cope with my life and my world when I am having a tough time.

I know Lyn who is my boss in Shared Lives Plus gets a big lift from working with me and the other ambassadors.

I didn’t really understand this at first until I experienced it myself.

For example, to do this job. Getting to know Nadia and Sinead and Grace and the other researchers has been good. How we did it is, we met up first and Lyn was there and all tried to get to know each other and started work a step at a time.  This was helpful to me. I didn’t feel under pressure. I knew that they would do it at the right pace and if I was struggling I could just talk to them about it.

This meant when I was doing the actual interviews I was ready. I didn’t need Lyn. I just met with Grace and it was just lovely to be honest because I was able to work with someone else.  I didn’t have to just rely on my boss I was able to work with other people.

To be honest it was more like focussing on the job really and making sure the people I was interviewing and the carers were happy.

Don’t get me wrong. Support is important to me.  Without the support I would struggle. The support has been lovely. It has taken away the pressure so I can just focus on the job.

And that is what everyone has done to enable me to learn how to be a peer researcher.

If the story was about a Disney character. It would be the story of Ariel from the little mermaid. This is because she goes on a journey and she learns about herself and everyone else learns something too.

Everyone has got something out of it. We have learned from the researchers, they have learned plenty from us and we have worked well as a team. The people we have interviewed have been pleased with us because they have had their voices heard.

It was better for them to be interviewed by us because they can see we are like them.  If they get interviewed just by professionals it can be worrying and frightening and scary. Like having a review or something. To have it from someone like me I think helped them to speak up more. I think as well that people seeing people like us doing a job like this absolutely made them feel more confident in what they could do too.

Thank you for listening.

We need a Homeshare Development Officer

Salary Scale: £32,966 per annum (19,285 pro rata). Hours: 2.5 days per week

Accountable to: Policy and Development Officer (Homeshare)

Location: Liverpool Office or Home based

Duration: Fixed term until 31st March 2020

Shared Lives Plus is the UK network for Shared Lives and Homeshare. Our members are Shared Lives carers and workers, and Homeshare programmes.

We are looking for a dynamic individual to build on a successful two-year period of growth and expansion of Homeshare across the UK. This key role will provide continued strategic support and guidance to our network members and provide stability and dedicated support for Homeshare pilot programme schemes while also supporting the wind down of unsuccessful programmes where necessary. The successful applicant will help to drive up the quality of delivery of the Homeshare and support the development of a sustainable future for the Homeshare UK network through the promotion and development of new funding models and opportunities, supporting development of new schemes and new models of Homeshare.

Shared Lives Plus is committed to equality of opportunity for all staff. Applications from individuals are encouraged regardless of age, disability, sex, gender reassignment, sexual orientation, pregnancy and maternity, race, religion or belief and marriage and civil partnerships.

Deadline for completed applications 9.00 am on 24th April 2018. Interviews will take place in Liverpool on 1st May 2018. Closing date: 30 April 2018

Shared Lives Plus Apply here.

Creating a groundswell

This is a guest blog from my colleague Anna McEwen:

At a Transforming Care conference organised by NHS England BILD in Sheffield,  I was delighted to deliver a workshop along with Shared Lives Ambassador James Rossborough and his Shared Lives carer Andy Cooke who are now a seasoned duo and brilliant advocates for Shared Lives.

As an ex-learning disability commissioner, I’m saddened by the lack of progress that has been made around the country since the atrocity of Winterbourne View.  Many of the challenges we heard about today are the same that we were talking about six or seven years ago in local authorities.  But what we did see and hear today was that, for some people, life has changed dramatically and that there are some really positive stories about areas doing things differently and empowering people to leave hospitals and institutions and live in the community.

I was heartened to see an agenda that started with people, not professionals; two of the three keynote speakers being people with learning disabilities or parents.  The conference was also co-chaired by the brilliant self-advocate Karen Flood, who made a great double act with Fiona Ritchie of Turning Point.

No one in the room could have failed to be moved when Carrie Grant (yes, the Carrie Grant off the tv!) spoke. Carrie is a mum to four children with special needs including two autistic daughters and one who has ADHD.  All have differing needs and have slipped under the radar, as is so common in autistic girls who very often turn to self-harm and even attempt suicide in too many cases.  How she leaves the house every day is nothing short of a miracle, let alone work, support other parents locally, deal with ‘professionals’ and school all on top of supporting her own children in four very unique and different ways.  Remarkable, as are all those families out there who are the real experts along with their children or family members and are best placed to work out how best to support them.

A couple of Carrie’s reflections were really powerful. Firstly – why are we sweating the small stuff? Why is our system trying to make young autistic people conform or ‘fit’, and excluding them if they don’t?  Do the small things (e.g. wearing school uniform) really matter that much that they are worth excluding young people and denying them the ability to learn with their peers? When we know what the implications can mean for those young people why do we continue to squeeze them all into the same mould?

The second, when asked what her priority would be for the next year in Transforming Care, Carrie said ‘creating a groundswell’ – creating a voice and movement that really starts to see parents and families as leaders and equal partners with the “professionals”, because until we really do then coproduction is just another tokenistic word and nothing will really change.

I was left thinking that while there are good things that exist out there, the damage done by letting young people down at an early age is irreparable and we must do better.

In our workshop we introduced people to Shared Lives, some for the first time, and shared stories of how people have moved out of hospital and institutional health settings into Shared Lives, changing their lives, physical and mental health for the better. Maybe if we were able to start this process earlier, to introduce young people and their families to Shared Lives carers, we’d be able to support them to develop relationships and stay in the communities they know rather than ship them off miles away and avoid that damage being done in the first place.  One mum in our workshop said Shared Lives is exactly what she wants for her 18 year old daughter, the alternative being hospital because there is nothing else – and what parent wants that for their child?

Anna McEwen is Executive Director of Support and Development for Shared Lives Plus: anna@sharedlivesplus.org.uk