Sceptical Trust

This blog first appeared in New Local Government  Network:

I know someone who’s renowned for his scepticism. The only problem is, he’s now so sceptical that he doesn’t feel able to trust anything. People who post videos on YouTube seem to have as much, or little, credibility as professional journalists. After all, journalists can succumb to group think. And who’s paying them, anyway?

The results of blanket scepticism look surprisingly similar to the results of blanket credulity. But in a corruptible world, where fake news looks ever more real and we are weary of being let down, how can we trust each other? Why should we?

I work with people who are temperamentally inclined to trust other people. They open up their own homes and lives to people who they have not known for very long. And sometimes it doesn’t work and they cope with this, but I hear constantly that living this way makes them happy. They are realistic about the people they live with, but often able to see and value them in ways that others cannot. Those who are considered vulnerable – the very young and the old – could be most at risk from this openness, but they are also those who appear to benefit most.

For instance, Homeshare organisations help older people to take an unusual risk: to let someone they have only recently met into their homes. There are police checks, references, interviews, but the core of the model is about helping two people establish trust. Recently I was also talking to two young women whose parents were Shared Lives carers. They had valued the experience so much that both were now involved in Shared Lives as adults, contributing untold amounts to those around them and their communities. If Shared Lives or Homeshare arrangements don’t work out, the local organisation steps in to help, but there is always an element of risk.

The risks of trusting no one, however, are stark. When we start to avoid the risk of trusting others, it can give us a short term sense of safety, but everything we value is corroded. Loneliness not only crushes happiness; it is in the same bracket of health risk as smoking. It is now endemic amongst older people, and even the best health or care service can’t fix it.

I also spend quite a bit of my time with a group of people who generally come quite low down on people’s trust list: politicians. My experience of them is that, whilst I often disagree with them on lots of things and sometimes feel we have very different life experiences and world views, they are generally people who believe they are helping other people. They work ridiculous hours and a lot of what they do is not at all glamorous, but is absolutely necessary in a democracy. They are as flawed as the rest of us, but based on having met quite a few, I am inclined to approach them with an attitude of sceptical trust, because without it we have no democracy worth the name. And of course, because I hope they will approach me and others who work for charities with something like the same attitude.

This seems a strange time to be suggesting that we all trust each other – whether we are Shared Lives carers or politicians – more. As 2017 picks up where 2016 left off, I am not completely confident that I will be able to practice what I preach on this, all of the time. But if you’re willing to try to approach me with something like sceptical trust, most of the time, I will do the same for you.

It is, I think, from small acts of trust that functioning communities, organisations and even nations are built.

The highlight of my week

This guest blog is a story from Derby Shared Lives scheme about how a team of Shared Lives carers can work with an individual who needs particularly complex support to live well. Thanks to Derby and my colleague Hannah for her input:

Rose loves horse-riding, swimming, going for a coffee and socialising. Going to church has been a big feature in her life.

Rose spent over 20 years living in a residential placement and has a complex and profound learning disability, very limited verbal communication and is in some ways a very vulnerable young woman. Historically, Rose was labelled ‘challenging’. It was clear she needed several Shared Lives carers for different support needs.

Rose now lives with Maxine, and has support from four other Shared Lives carers who provide day support and overnight breaks for Maxine, who is a Shared Lives carer is Derby.

It was the smile that won Maxine over. Introductions continued for around 6 months, an afternoon, a full day, and then two days a week. These were maintained when Rose went from hospital to a respite provider- it was too soon to attempt a move straight to Maxine’s. Rose eventually had an overnight at Maxine’s and this went really well. Training and countless meetings for the Shared Lives carers, including Rose’s mum and family, were arranged and everything went very well. For several months now, Rose has had possibly the most settled and community-based support of her life. At present, they have a great connection and understanding of one another, and Rose is now able to share her everyday life and activities with Maxine which was unimaginable two years ago.

Heather is one of the Shared Lives carers who supports Rose in the day. She says, “My friend is a child minder and she lives over the road. When Rose comes on a Tuesday and Friday, Susan always pops over for an hour and Rose loves to spend time with the children… Rose absolutely loves children…”

Another Shared Lives carer, Julie, says: “It’s the highlight of my week. I really look forward to Rose coming here. I just get so much from it, so much in return.”

Monica takes Rose horse-riding and this is her favourite time of her week. Monica also supports a gentleman long term. He and Rose have made a really valuable and genuine friendship. “They both love spending time together. It’s simply two people who have really clicked and enjoy each other’s company.”

Maxine has included Rose in all aspects of her household and truly shared her life: “My mum loves coming round and seeing Rose… Rose has made a big impact on the others at Church and is warmly welcomed each week and included in everything… Rose brings a richness to my life, has a real sense of humour and real character…”

Rose has now been at Maxine’s for almost one year. There have been ‘incidents’ and challenges, but everyone involved in Rose’s life agrees that this has been a real success. Rose is leading a ‘normal’ life in her community, with people in her life who care and take an active interest in her life, expand, develop and create fresh experience and opportunities. Rose’s social circle has grown significantly and will continue to do so.

Some arrangements can be challenging but not impossible. Shared Lives Worker, Dean Davis and Ordinary Lives Team Social Worker, Naomi Fearon, have worked very hard  ‘thinking outside the box’ to make this arrangement work for Rose so successfully.

James’ story

With thanks to the Shared Lives scheme and the household involved, below is ‘James’ story, which illustrates that with the right planning, investment and back up, Shared Lives can work for people who have been labelled ‘complex’ or ‘challenging’. We are keen to talk with colleagues involved in the Transforming Care agenda about the potential for Shared Lives as a route out of hospital for people with learning disabilities:

After a lengthy stay in a residential hospital for people with learning disabilities, James was discharged home with depo medication to help to control psychotic episodes. On his return home, James was abused by a family member. As a result, James was taken to a place of safety by the police. He was then given future support and accommodation options which included Shared Lives.

James decided that Shared Lives was a good option for him and was matched with a Shared Lives carer called Phil. Phil already had one person living with him in a Shared Lives arrangement and he also had a lot of experience. He had previously supported adolescents as a foster carer and was experienced in supporting people with ‘challenging behaviour’.

Phil supports James to experience lots of new things, including supported employment, independent travelling, grey hound racing and fishing. James went on holiday with Phil and his family and joined in with all that they did. They enjoyed this break together and it provided them all with respite from day to day life.

Whilst living with his Shared Lives carer, James’ depo medication was assessed and discontinued due to the risk of long-term side effects. His mental health deteriorated and he returned to having periodic psychotic episodes. When James is unwell which has been occasionally, he is readmitted to hospital, sometimes under section.

When James is well he lives happily with Phil. He has a clear support plan, with additional Shared Lives support carer input to enable Phil to take regular breaks. James knows this person well and her support is flexible, depending on James and Phil’s needs at the time. For example, sometimes she moves in so James continues to live at home when Phil goes away, which means minimal disruption to James’ home life. At other times James can go to her home, where she provides day support and overnight respite. James also has regular input from the community learning disability nurse and community psychiatrist.

James’ Shared Lives scheme worker is honest in saying that the Shared Lives arrangement can be challenging at times especially when James’ mental health deteriorates. But with the good support systems in place which are reassuring for James and Phil, both value the family life their share and neither could imagine James living anywhere else.

Shared Lives together

It’s Shared Lives week, which this year includes a parliamentary reception hosted by Jonathan Reynolds MP,  Vice Chair of the parliamentary group on Autism at which we will announce the first group of local NHS trusts who will receive match funding and expert support to develop Shared Lives as a health service.

The theme of the week is Shared Lives Together. Lots of our communications this week will focus on what that means for the individuals directly involved in Shared Lives: people who feel now like they have a place in which they belong; households which feel that they have become richer for the experience: “Turns out this fills a gap which we didn’t even know was there”.

I’d also like to say something about the way that Shared Lives not only helps to build strong, resilient households, but can also play a part in strengthening the community around that household. We hear time and again about the friends which the individual living in a Shared Lives household has made, about their roles as volunteers, members of local groups and employees of local businesses. One Shared Lives carer told me that the reason she knew all her neighbours was solely because the young lady who came to live with her had a gift for making friends (the Shared Lives carer’s role often being to help her make good choices about those friendships). Another individual liked to help his neighbours in small ways like putting bins out, which they knew was appreciated from the number of Christmas cards he received each year. Small connections which can make a big difference to how a place feels like to live in.

That link between supporting individuals and community development, feels like it is one which needs to be made more often. Without making that link, you have “community care” which doesn’t enable people to feel part of a community, and community development work which inadvertently excludes people who have support needs and who can sometimes be amongst the most isolated.

Shared Lives is an illustration of how, with the right resources and back up, strong relationships within a household can lead to stronger relationships within the neighbourhood. Shared Lives households don’t just focus inwards but also reach outwards, to make the connections which start to feel like community, and which ultimately, help to build better places for us all to live in.

Above and beyond

This is a guest blog from our Executive Director of Support and Development Anna McEwen who writes:

Yesterday I visited Paula and Ian who live in Beckton, London.  It was like going to visit old friends as I’ve known them for many years in different roles.

Ian moved in to live with Paula and her family in 2000 and Paula has gone through many incarnations of regulation including registering as a small care home before joining Newham Shared Lives scheme when it was established in 2009.  When Ian first moved in, after his former foster mother died, Paula’s children were both under 5 – now her daughter is a student nurse and her son has just begun a scholarship playing basketball in America.

It was wonderful to see them both, but this time the purpose of my visit was to hear from Ian’s health journey of the last year.

It was June 2015 when Ian began to feel unwell, he had a high temperature and wasn’t eating – something that is really unusual for him.  So, Paula took him to the GP who initially thought it was a viral infection. When he got no better, Paula took Ian back to the GP who sent him for blood tests.  Still no improvement and Paula knew something was badly wrong by now, Ian was tired, lethargic and his temperature kept spiking.  The next time he went back to the GP he was fast tracked to hospital where he underwent tests in A&E before being admitted.  He ended up staying in hospital for one week during which time he had an endoscopy operation to unblock a bile duct.  Paula spent all day every day in hospital with Ian who told me it was a bit scary being in hospital.  Paula was there from 9am until 8:30pm each day so that Ian knew that he just had to sleep for the night and then she’d be back there for him.

Paula and Ian
Paula and Ian

Once the operation had been done, Ian initially felt much better and they both had a sense of relief.  Unfortunately, they were then told the news that the tissue removed in the operation and sent for biopsy was cancerous.

For the next couple of months, Ian went through a number of tests and scans and was then referred to a specialist at the Royal London hospital.  Paula talks about the consultant being a wonderful man who always took the time to talk to Ian, explain things to help Ian understand and then performed the major operation to remove Ian’s gall bladder and tip of the pancreas.  Again Paula spent each day in the hospital with Ian throughout the 10 days he stayed there.  He was initially very weak after the 5 hour operation and spent time in intensive care, but the hospital put in extra support for Ian in those early days.

Ian was also visited and blessed in hospital by Father Bob, from Ian’s local catholic church, who has been supporting Ian and other disabled people to visit Lourdes each summer for the last 15 years.

Following the operation Continue reading