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.

“I want to inspire other people to learn to read”

Ursula has been in the news, having been learning how to read through the help of her Shared Lives carer, Lesley, who is part of Shared Lives South West. Ursula is 87. The education system of her childhood had little ambition for Ursula and at school, she would sit at the back of the classroom with a friend that could read, turning the page when she did. One of the reasons Ursula has learned to read is because she loves knitting but was unable to read the knitting patterns. As so often happens in a Shared Lives household, Lesley got to know Ursula well enough to see her capabilities and potential, not just her needs. Rather than Ursula’s support being arranged around a busy shift work pattern, they have the time to spend together to learn at Ursula’s pace, as well as Ursula being supported by Learn Devon. Ursula says she hopes to inspire other people to read from her example.

We see people achieving extraordinary things all the time in Shared Lives arrangements, often in later life. I always have mixed emotions about these stories: inspired that people have rejected a lifetime of assumptions about what they cannot do, but angry thinking about the decades of expensive support services and ranks of experts who were either unable to see the person, or content with a lack of ambition. In the field of psychotherapy, there is research to suggest that the quality of people’s relationships with professionals has at least as much impact upon the outcomes of support as the technical skill of the practitioner. Shared Lives is implicitly built upon this insight: most of the investment is in getting the right people involved as Shared Lives carers and then matching them with people with whom they may be able to form a unique connection. Not every match works out, but when it does, the results can be astounding. Shared Lives carers will often report that it was not a complex intervention which helped someone change, but simply their relationship with a family member or even a pet. We often hear that the Shared Lives carer’s children are the ones who successfully encouraged their new household member to learn a new skill such as riding a bike.

Recently, another Shared Lives carer, Sarah told us about one of the men who lives with her: “One of our housemates has had his art etched on the glass walls of a newly renovated crypt at Rochester Cathedral- and he is soon to embark on his first solo exhibition … aged 70!”

All people really need

Our Executive Director of Support and Development, Anna McEwen, spoke at a Westminster Forum event on Transforming Care last week, at which it was announced there has been a 12% reduction in ATU usage for the first time. Anna spoke about how Shared Lives can contribute to the Transforming Care agenda, saying:

I’d like to start by introducing you to James. James lived in a residential hospital for people with learning disabilities for many years and was discharged home with depo medication to control psychotic episodes.  He was severely abused and set on fire by family members and so needed to find somewhere new to live. Shared Lives was one of the options he was given.

James decided Shared Lives was a good option for him and was matched with Shared Lives carer Phil who supported him to experience lots of new things, including supported employment, independent travelling, greyhound racing and fishing.  James also went on holiday with Phil and his family which he really enjoyed.

While living with Phil, James’ medication was reviewed ad discontinued but then his mental health deteriorated and his psychotic episodes returned.  When James is unwell he has occasionally been readmitted to hospital.

When well, James lives very happily with Phil. He has a robust support plan, with additional Shared Lives support carers who know him well so that Phil can have a break too. Good support systems are in place to reassure Phil and James, both value the family life they share and neither could imagine James living anywhere else now.

Shared Lives is a family based model of care that supports older and disabled people to be supported within family homes in the community.  Shared Lives is delivered by 125 CQC registered Shared Lives schemes in England who recruit, train and support Shared Lives carers.

Shared Lives carers, like Phil, go through a rigorous assessment process before being approved as a Shared Lives carer.  They are then matched with an older or disabled person who may move in and live as part of the family, or visit the family home regularly for support during the day or short break (for example if they live with a family carer). The matching process is very important in Shared Lives, if you’re going to share your life with someone it’s important that you get on.

As in James’ story showed, Shared Lives has demonstrated it can be part of the solution, it is adaptable and flexible for people with complex needs and has a twin focus on great care and a great life. If you think about your own life, usually the things that define you and are most important to you are the relationships you have and the people you share your life with, Shared Lives enables people who need support to develop these same relationships that are fundamental to our human needs and make us feel secure and loved.

Shared Lives also brings a different ethos to traditional service types,. It’s about having a good life with a purpose, having relationships and based on an asset based approach where people contribute to a household and community.  Being independent doesn’t have to mean living alone, in fact most of us would say we’re hugely independent but few of us choose to live alone.

Shared Lives carers often have a background or experience in working in health or social care.  They may have been nurses, social workers or support staff so they already have a lot of experience in working with and supporting people who have very specific and often intense needs.

We know that Shared Lives isn’t for everyone, that it is one of a suite of more community based options that should be available for people to choose.  It also can’t be a service in isolation, and needs to work together with other community services to ensure wrap around support for both the individual and the Shared Lives carer.

We’ve recently launched our NHS programme funded by NHSE which is providing match funding to six CCG areas to develop Shared Lives in the healthcare sector.  We’ll work with CCGs and local schemes to develop new pathways and opportunities for people with healthcare needs to be supported in Shared Lives. Some have a focus on developing Shared Lives for people from the Transforming Care cohort.

At Shared Lives Plus we think that solutions like Shared Lives and other community asset based approaches should be considered as part of a range of options available to people in the Transforming Care cohort when they are considering how they receive their care and support.  Sometimes, being part of a family, feeling loved and secure is all people really need to transform their lives.

Do the right thing

There is lots of discussion at the moment about self-employment, exploitative employment and the ‘gig economy’. Lots of people love being self-employed: it can (and should) mean being able to choose when and where to work, or with whom, and working with lots of autonomy, rather than with close supervision by a manager. You don’t get the continuity, pension, holiday pay and other benefits of being an employee, but you get more freedom. There are workers such as Uber drivers and Deliveroo couriers who are designated as self-employed, but who have claimed that they are really employees, who have to work when and where they are told, at a rate fixed by the organisation they work for, with penalties if they turn work down. Meanwhile, some care workers have claimed that they are not being paid for all the work they do, particularly if they are required to be ‘on call’ or to sleep at a service they work at, without being paid an hourly rate for that. And some foster carers, with an unclear self-employment-like status, are demanding employment rights, because, again, they feel that their work is controlled, not autonomous and some feel that they are underpaid for what can be demanding roles which demand long hours of hands-on care, with little redress if they feel unfairly treated.

These disputes and court cases will no doubt run and run and I’m not going to try to give any opinions on them, but we’ve watched with great interest and some anxiety, because Shared Lives carers are self-employed workers, whose employment status is often compared to that of foster carers. Shared Lives carers go through a three to six month approval process before being matched with adults who need support so that they can share home and family life. The individual moves in with the Shared Lives carer or visits them regularly, either way being treated as ‘part of the family’.

In some ways, the focus on bogus self-employment feels helpful to our sector. When Shared Lives is done properly, Shared Lives carers choose who they work with, they always use their own home (even if only as a base for day support) and they work with a high degree of autonomy, not according to rigid timetables, for instance. All of these factors are indicators of genuine self-employment. In some areas, the model has come under pressure due to cuts, which has led to the local scheme being asked to cut corners or ignore parts of the regulated model:

  • Despite an ombudsman’s judgement to the contrary, some commissioners want to regard Shared Lives as a 24/7 model of care, which would entail the Shared Lives carer potentially ‘working’ 24 hours a day. Where someone needs round the clock hands on care, they should be offered separate day support and in some cases, several Shared Lives carers work together to meet high support needs whilst everyone still feels that they are part of family life, not a traditional service.
  • Some areas are under pressure to shortcut the matching processes, which would result in less choice for both individual and Shared Lives carer.
  • One area recently raised the idea that Shared Lives carers should only be paid for the hours they are actively providing care whereas our good practice guidance suggests that Shared Lives is not paid by the hour and should involve at least four weeks’ paid breaks a year to be sustainable.
  • Many schemes constantly have to fight against a creeping tick box culture, which would replace the autonomy of Shared Lives households as they pursue ‘ordinary family life’, with a service mentality of closely-supervised staff and constant paper trails.

These pressures on the integrity of the model are based on a false economy: Shared Lives is an average of £26,000 lower cost per person per year when it is done properly, with all costs taken into account. The saving, which doesn’t even include savings which might be associated with better outcomes, is based on Shared Lives carers and their families choosing to contribute far more to people’s lives than they could be obliged to by a contract in relationships which can be lifelong if well set up.

Despite the complexity of the law, there is a useful simplicity at the heart of these questions: any of the above actions which undermine the Shared Lives ethos would also undermine the self-employment status.

The message to our sector – and perhaps others – is clear: don’t try to have it both ways. If you treat Shared Lives carers at times as self-employed and at others, as low status employees, expect expensive court cases along with all the other risks of the model not being valued and followed. On the other hand, spend what are usually modest amounts of time and money choosing, valuing and supporting households, and rewards multiply, as people live happy, low maintenance lives for decades.

The legal arguments will always be complex (to address that, we are working with legal firm Clarion to produce new guidance for our members), but you don’t need expensive experts to tell you how to avoid calamity: just do the right thing.

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.