Meet the sharers

Our new Twitter project is @MeetTheSharers, a brand new, year-long, rotation curation project from @SharedLivesPlus. Every week, for the next year, we’ll be handing over this account to a different Shared Lives family, so they can tell you all about their lives, in their own words.

The Portwoods are no strangers to the media spotlight, they were featured on @GranadaReports in February and now get recognised on the street. See the ITV news film here.

Emily and Allen provide Shared Lives support through @meetmacintyre, one of a network of Shared Lives schemes across the country. Emily is a full time Shared Lives carer, she loves the gym, Slimming World healthy eating plans, cooking, driving to nice places and walking. Allen is a vehicle technician and owns his own garage, he works each day to assess and fix cars then comes home to his Shared Lives life.

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Molly is 26, she works with children in an after school club, loves the gym, yoga, Pilates, and Zumba. During lockdown she has baked, walked and kept her friendship group going each Wednesday. Beth, on the left, is 22. She doesn’t live with Emily and Allen, but comes to visit them several days a week as respite care.

Tyler is 18 and is very much into his social media networking- he loves posting YouTube and TikTok videos. Tyler is an animal lover and is enrolled on a college course that involves learning about animals. Robert is 61- he is interested in films, he likes the musicals. Robert loves to socialise with people, he attends the Macintyre day centres and is looking forward to going back to the visual impairment centre when it opens up.

It’s a cosy household, which also includes Emily and Allen’s sons (Spencer, Declan, Harley, and Jordan), dogs Bella and Cadbury, a handful of guinea pigs, and a tank full of fish.

Equality

Meg Lewis has lived experience of using Shared Lives support and has spoken powerfully at events about her experiences of different kinds of mental health services. I love this guest blog that she has kindly written, which reminds me that the big issues like equality, start in ‘small places, close to home‘. Meg writes: 

In the many, lovely Shared Lives stories that we hear, the same thing jumps out at me: people being treated as equal. Not making assumptions about people based on their disability. Equality.

Damn right.

But you know what? People don’t always work that way, even people who live in Shared Lives.

There’s a Shared Lives party at a local club. Being someone who doesn’t go out to social events often and being extremely self conscious, I have butterflies in my belly and it takes me 3 hours to get ready and choose an outfit and finally decide on the first one I tried on. I forcefully tell myself I look “fine” and manage to get out of the house and arrive at the party.

I like a beer so I head straight to the bar, exchanging smiles with anyone I accidentally make eye contact with. I’m a bit hot and flustered but, now, with a beer in my hand and spotting my carers at a nearby table, I chill a little and head over to sit with them. Those familiar faces and easy chit-chat ease me more.

It’s getting rowdy on the dance floor. Karen, a lady with down syndrome, is looking sassy and showing us her ‘twerk’ and Joshua (he has autism and a non-mobile hand) is raising the roof with his beat boxing and throwing some shapes. I’m feeling settled now and want to get in on this fun! So I pick up my drink and joking them on the dance floor. We danced our socks off when Proud Mary came on! Buzzing! I go out for a cig to cool down and that’s pretty much how the next hour and a half went. Drinking, dancing, smoking outside for a cool down. But after a while I started noticing the disapproving looks, eyes rolling, a “tut”at the bar. My mind starts racing at 100mph…”No one likes me”, “I must look stupid”, “I’m ugly”, “What have I done? “, “Everyone hates me”…..”I hate me”.

I sit at the table and play with the beer mats, no more dancing, and I wait until I can go home.

For the next few days I’m plagued with thoughts of not being good enough which has now triggered that familiar feeling of self hatred.

Then I find out what the issue was Continue reading

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.

 

Dressing up

Steve Scown, the thoughtful and  reflective CEO of progressive not-for-profit care and support provider Dimensions, wrote today about the thorny issue of supporting people to make choices, when the choices they make might seem to be harmful to them. Steve contrasts his own life, in which his wife would vocally object if he tried to make the unwise choice to live off a diet of chips, with a support scenario from one of his services, where an adult who has a learning disability wanted to wear his batman costume every day, but hated the ridicule he got when he went out in it. He was becoming afraid to leave the house. The man had the mental capacity to make his own choices, so the staff supporting him “had concluded they had no option other than to support George to wear his favoured outfit.” Their role was to support him to choose not to make choices for him. The staff later found ways to help the man re-frame his choices and to focus more on his goal of not being ridiculed, than his desire to wear his unusual costume.

Steve’s point is that ‘choice and control’, applied blanket-fashion, is not likely to lead to great support. I think his point is well made and his conclusion reasonable: that care providers should learn to live with ‘complexity and ambiguity’, bringing a thoughtful and nuanced approach to “inform our risk assessments and …. best interests meetings”.

So I don’t disagree with anything Steve said, but I would like to delve a little deeper into what I would see as the underlying issue. For me, the challenge with supporting the Batman fan, and the difference between his situation and Steve’s, is perhaps the kinds of relationships in their lives. In other words, not a challenge with the quality of support, but with what we mean by support. I don’t know the man in question, but what he appeared to lack was a circle of friends to help him make choices. Dimensions is a great provider and I’ve no doubt that the workers supporting him did their job well, but their roles can never be a replacement for the friend or partner, who is a position to say, ‘You’re making the wrong choice’, because the person they are talking to is equally in a position to say, “I’m doing it anyway’. A Community Circle could help with this.

If the man was living with his family, they would have something to say about his choice of outfit, but would likely talk quite a different language to that of a service. In turn, any professionals in contact with the family would take a different view of that family’s choices to those made by fellow professionals. If the family had said ‘no’ to batman, some professionals would wonder if they were ‘controlling’. If they did not object to it, or they had learned to live with it, those same professionals might accuse them of infantilising the man, or blocking his development to independence. I mention those possibilities, because we have a tendency in service-land to bring our ‘professional’ lens to people’s lives, whereas for me there is a strong argument for services to try out the perspective of family life in considering this support challenge.

In a Shared Lives household, the relationships are somewhere in between those of a family, and those of a support service, which means that a Shared Lives scheme would probably find that situation just as complex and ambiguous as Steve’s organisation, but it would also offer a different way to look at it. When someone has chosen to live with a family as one of the household, particularly for many years, members of that household tend to approach offering advice more as they would for another family member, than as a professional working a shift. The man might need to make a choice between wearing his outfit and, say, going with the Shared Lives carer’s son to the football, just as any of us have to consider the extent to which we are prepared to moderate our particular choices to fit with those of our friends. A really great Shared Lives carer might also help the man build a circle a friends who were into comic conventions and cosplay: seen through that lens the man’s outfit choices are no longer age-inappropriate per se, it’s just a matter of the right time and place…

I’m not suggesting that Shared Lives has all the answers to these complex situations, but it does seem to me that Shared Lives, and the norms of family life more generally, offer a way to approach differently situations which in service-land we frame as being about risk assessment, mental capacity and independence. We could instead recognise that our main challenge is to help every individual to form and then navigate the personal relationships which we all need to live well. Services can never offer or replace those kinds of relationships: when we try to imitate them, we are just dressing up.

Thanks to Steve Scown (@SScown) for his thought-provoking blog and for inviting debate on this important subject.

The shelter of each other

Our colleagues and members in Northern Ireland hosted an event for commissioners exploring how Shared Lives could be developed as a new form of short breaks, day support and home from hospital care for older people.

We are grateful to Fionnuala McAndrew of the Health and Social Care Board who helped convene and kick off the day and to Mary Hinds, of the Public Health Agency, who summed up beautifully, drawing on an Irish proverb I’ve not heard before: We live in the shelter of each other.

I’d be willing to bet that that rings true for you as much as it does for me. For years now, the ideal living situation through the eyes of long term care and support services has been independent living. It’s not a bad goal, particularly when contrasted with institutional alternatives. But that language doesn’t tend to figure in our own descriptions of what we dream of, unless or until our independence is at risk. When people describe happiness, for most (admittedly not all) of us, it involves having people  we can rely on. In other words, we dream of interdependence, not complete independence.

This can be an uncomfortable idea for long term support services which are wary of ‘creating dependence’. Few of us would want to be dependent on a service. But perhaps it is not so much that becoming dependent is ‘inappropriate’ to support relationships, but that the way we construct support relationships can be an uncomfortable fit with our naturally interdependent nature. People working in social care often find their roles put strict limitations on the definition of ‘care’ and are too rushed and impersonal to feel ‘social’. This incompatibility between the human nature of both people who give and those who receive long term care is at its most stark when the intimacy of personal care is carried out by a succession of strangers.

Shared Lives is not about dependency in the pejorative sense and for some people it is very much a stepping stone to getting their own place. Half of the people using Shared Lives Continue reading