I’ve been on adventures and made new friends

Meg who spent five years in a mental health hospital, told an audience of MPs, Ministers and people involved in Shared Lives that we need to see people with mental ill health as “people with a future”, not as a risk or a case to be managed. Shared Lives was her route to feeling human again, “With the support of my clinician, I moved in with my Shared Lives carer in a new town. I was so scared, I didn’t know how to live in the community, but she taught me and she stood by my side. It’s been 22 months since I left hospital and I have achieved so much. I work three days a week, I run a self-harm support group in my town, I’ve been on adventures and made new friends. In January this year, I moved into my own house and my Shared Lives carer still supports me a few days a week.”

Meg’s journey from not being confident crossing a road to speaking in parliament was dramatic. Ali told us that she reads “all the inspirational stories about the amazing things that people in Shared Lives have achieved. And every time I think to myself ‘well me and Chris haven’t done anything like that’ and I feel like a bit of a fraud.” But Chris’ journey to living somewhere he could just be himself, after 19 years in residential care, is inspiring: “It was an excellent home. But there were staff. And there were residents. And there were lots of boundaries, and when Chris wanted to go for a drink in the pub he had to complete a risk assessment.”

“Well I’m not staff. I’m not even sure I am particularly a carer – I’m just me. And Chris is not a resident or a client or a service user, he’s just Chris. And we live together and learn from each other and drive each other mad and maybe, just maybe – though we’d both be far too embarrassed to admit it- we even love each other a tiny little bit.” Chris and Ali’s full speech is here. 

Meg asked us to think about all the most embarrassing things we’d ever done; the things we really regretted. And then to imagine they were all written down in a record we carried with us and had to show to every new person we met, with none of the good things we’d done included. That was what it was like to be within the system for her: never being able to grow beyond her past. Darren told us that he couldn’t remember much about his many years in nursing care: mainly just watching TV. Now he has a busy life with less medication, more exercise and activities, and most importantly, friends, in a household where he felt he fitted in.

We need services which care for people, but which think hard about all the impacts of that care, good and bad. As Ali put it, “I am learning all the time. In particular about how to tread that very fine line between ‘support’ and ‘control’ and how to just let Chris be himself.”

Our thanks to Liz Kendall MP for hosting our event, with speakers Norman Lamb MP and Kit Malthouse MP, all of whom pledged to help make sure our members are valued and celebrated as we try to bring Shared Lives to many more people.

 

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The personal is political

My social media timelines are full of two very contrasting sets of stories today: the stories about people coming together, as Shared Lives organisations celebrate Shared Lives week, and images of distraught children being taken off their parents at the US border. There could hardly be a starker contrast: our capacity to unite and to divide.

People who choose to share their lives with people to whom they have no legal or family obligation are doing something both natural and radical. They are making a choice to build their whole lives around the idea of bringing people together. They send us a powerful message: one which feels more important now than ever, so we are fortunate to be able to take their messages into parliament tomorrow, for our annual parliamentary reception. It is a truly cross-party event, this year hosted by Liz Kendall MP, last year by Alistair Burt MP. Norman Lamb MP will be speaking alongside Kit Malthouse MP. We’re going on a day when politicians will once again be debating Brexit and bitter divides will be laid bare. Our stories of people supporting each other to live life to the full could be seen as light relief by the parliamentarians, but I hope they feel the power of those stories, their radicalism and how much we need people who bring people together right now.

The choices that our members make are very personal, but as feminist Carol Hanisch said in 1970, “the personal is political”. So this year, we are celebrating the personal stories of Shared Lives as usual, but also calling on politicians of all parties, locally and nationally, to value Shared Lives carers, ensuring they have the training, back-up and fair pay they need to carry on making their very personal contributions to the future of our health and care system, and to building stronger communities and a more unified society in these divided times.

Feeling settled

The Children’s Commissioner reports today that : “We estimate that the majority of looked-after children – 74% – experienced some form of change during 2016-17: a placement move, a school move or change of worker. This is equivalent to 53,500 children.” (via BBC article here) Antony Corrigan, now an adult, said of his experience of moving around as a ‘looked after’ child: “You find it difficult to make a friendship group and you become alienated….I had at least 10 placements, including two children’s homes and in terms of social workers, I lost count, but I probably had about 10 in total. I just wish there was more consistency in the care I was given. It’s so easy to get lost in the system, no-one’s pushing you or encouraging you.”

We are cautious about making comparisons between foster care and Shared Lives, despite some obvious similarities in how they are organised, because Shared Lives is not about treating adults like children, and fostering is associated in people’s minds with family breakdown, whereas Shared Lives is something that adults choose when they are looking for the mix of independence and support which most of us look for when we form a family or a household as an adult, and it is very often about two families working together.

But I was struck by the contrast between that high level of instability in children’s lives, at a time when stability is so vital, and the tendency of Shared Lives arrangements to last for years. I recently met a young woman who had had around 30 foster or children’s home placements as a child, but who was thankfully settled in her Shared Lives household as a young adult. I’ve never come across someone using Shared Lives who has had more than a handful of Shared Lives arrangements over a period of years, and I meet many who have lived in the same household for decades.

There is often an emergency, unplanned aspect to fostering, which will be one factor at play, but that cannot explain children who have been moved multiple times. I wonder how much the strong focus on matching – both parties choosing to live together – plays in the relative stability of Shared Lives, and whether there is a debate to be had about matching within fostering, where there is a greater focus on professionalisation and avoiding attachments that might not be maintained. I’d be interested to hear from people much more knowledgeable about children’s support than I am on that.

Ironically, stability in the adult support sector is not always seen as a good thing. Whilst it is recognised that someone whose support arrangements are constantly breaking down is not happy (and that those crises are very difficult and expensive to manage), being ‘too’ settled is also sometimes frowned upon by service managers. I hear regularly that people who are happily settled in a Shared Lives household are constantly being considered for moving on to ‘greater independence’, even if living by themselves is not what they are looking for at that stage of life (how many of us dream of always living alone?) Sometimes that unwanted move uproots them from the support networks they have built up and they wind up in the revolving door of failed support arrangements.

In both children’s and adults’ services, there is constant churn and movement, whether it is children being moved multiple times during an already troubled childhood, or adults getting intimate personal care from a succession of strangers on a staff rota. Whereas in ‘ordinary’ life, most of us crave some kind of attachment, mutual dependency and feeling settled. As in so many things, services could learn a great deal from ordinary family life, if only we had the humility.

‘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.”

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.

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

Safe, shared lives

This is a guest blog from one of our newest colleagues:

I’m Natalie and I currently work for a national domestic abuse charity called SafeLives; having worked in the domestic abuse sector for over ten years, I’ve just been seconded to Shared Lives Plus to work on a new domestic abuse project. Funded by the ‘tampon tax’, we’re going to be working in partnership over the next two years to provide an alternative accommodation option to victims and survivors of domestic abuse. We know that housing issues can place a massive barrier in the way of victims, either when trying to leave an abusive relationship or when trying to move on from previous abuse.

Unfortunately, domestic abuse is prevalent; one in four women

Read the rest of this blog at www.sharedlivesplus.org.uk