Minister meets Shared Lives carers in Newham

Thanks to Anna (, our Director of Support and Development, for this guest blog about a visit  from Rob Wilson MP, Minister for Civil Society, who went to Newham Shared Lives scheme during Carers Week and met one of our youngest Shared Lives carers and the family she supports:

Newham Shared Lives scheme is one of 12 Shared Lives schemes in England involved in our carer project with a focus on supporting people who live with a family or unpaid carer to use Shared Lives for respite or short breaks.  The project is funded by the Cabinet Office.

Brenda is a young Shared Lives carer who currently supports two people living with her in a long term arrangement, and supports Rhianna for regular short breaks.  Rhianna is a young woman in her early twenties with a learning disability and visual impairment who lives at home with her Mum, Debbie.  Rhianna also has a younger sister who is nine and two older siblings.

During the visit Debbie described how Shared Lives has been a lifeline for her.  She has a really close relationship with Rhianna, and that’s visible for all to see, but has her own health issues and a younger daughter at home too.  Debbie told us how she’d always had trouble in the past with respite services, Rhianna hadn’t enjoyed going there and she’d had issues with trusting the staff.  She now says how she has absolute trust in Brenda and how much Rhianna looks forward to going to stay for the weekend.  These weekends give Debbie an opportunity to have a rest and spend some quality time with her younger daughter too.

Rhianna told us about all the good times she’s had since going to stay with Brenda, including the O2, bowling and getting out and about. Brenda said they always decide together at the start of Rhianna’s stay what she’d like to do.  When the Minister asked Rhianna what she’d like to do with Brenda this weekend she said to go to Southend for the day which Brenda thought was a great idea!

The Minister asked Brenda about why, as a young (twenty-something) person she’d decided to become a Shared Lives carer.  Brenda explained that a friend of hers was a Shared Lives carer and she’d seen the effect, and she wanted to do it too.  She explained that she gets as much out of the experience as she gives, and that instead of doing things by herself she gets to do them with the people she’s supporting, and that she’s seen much more of London since becoming a Shared Lives carer than she had before.  Brenda actually lives with her Mum and uses the spare rooms in their home for Shared Lives.

For a young woman like Rhianna, to be supported by a young Shared Lives carer like Brenda is an amazing opportunity.  She is supported by one of her peers and it’s more of a relationship with a friend than a traditional care provider.  I know Brenda does much to link people in to what’s going on in the local community and that Rhianna gets to do the things that all twenty-somethings want to do, the sky really is the limit.

It really was an inspiring visit and the Minister took time to talk to Brenda, Rhianna and Debbie about their experiences, before they all took selfies.  Shared Lives offers such a personalised experience designed around the individual and is all about the relationship.  Although they’d only known each other a few months, Brenda, Debbie and Rhianna were obviously really close and had shared so much.  It’s a big deal for any family carer to trust someone else to support their family member, but the relationships we see every day in Shared Lives make that so much more possible and allow that “good life” that we all want.

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:

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.

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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.