I have spent the last four years working for Shared Lives. I am leaving, imminently, to do something completely different. This ending is causing me to look back over the time I have spent within this wonderfully quirky organisation.
I saw an advert for a job at Shared Lives shortly after relocating to the South West. I had been qualified as a social worker for around 9 years, working in outer London, and had never heard of Shared Lives. Seeing the organisation described within the advert made me want to find out more.
Maybe I hadn’t heard of Shared Lives because I worked within a generic adults team, whereas the Shared Lives model is more widely used within the learning disability sector, for no other reason than this seems to be where it started. The more I read, the more I started to think “Yes! This is what I would want for myself! This is the kind of care I would want if I was unable to live without support.” I admit to a certain amount of selfishness when thinking about how positive it made me feel that there might be another way to receive care. I had feared becoming disabled in some way and then not being able to continue my lifestyle in the way I wanted – going out late and not telling anyone when I might get back, for example… How would that work with multiple risk assessments coupled with my desire to lead an unhealthy and unwise social life filled with the wine that I’d spend the majority of my money on!? It always amazes me that social care is not more to the forefront of all of our minds. We are all, at risk of sounding morbid, only one accident away from life changing injury that might suddenly plummet us into a world of lessened choice and control.
As I started to learn more about the people who work as Shared Lives carers, and the people who live with them, I also started to hear questions from professionals. I remember one in particular: “aren’t you creating dependency by encouraging people to forge deep relationships with their carers?” Shared Lives carers care deeply about and, dare I say it, often love the people they support. Only recently I spent time speaking to a tearful grieving carer who had spent in excess of 20 years caring for someone who had recently died. She had lost a member of her family and she felt this as acutely as anyone else, regardless of her ‘paid carer’ status.
I started to think about the people who make my life fulfilling; my friends and my family. Am I ‘dependent’ on them? Well I guess yes, in a way I think I am. But does that mean I should protect myself from all hurt, and hold back? Is it better to have loved and lost than not ever to have loved at all? Yes, relationships break down, and it hurts – really hurts. But does that mean I should stop forging relationships that might inevitably cause me heartache?
This led me to think about a wonderful story that shouldn’t even be a wonderful story – we recently celebrated a couple getting married within Shared Lives. Leaving the Article 8 ‘right to family life’ aside for a minute, these two people had cared about each other deeply for many years. However, the system they lived within had kept them apart. One was in a residential home and another wasn’t. It took the combined will of a number of professionals to seize opportunities when they arose. Firstly, the man moved in with Shared Lives carers due to a change in his circumstances – that took a worker who listened to him. After moving in, he continued to see the woman he loved with the support of the carers. It then took another worker who knew the woman well and who listened to her, to work with a range of professionals to support her to have her wish (and human right) to move in with the man she had loved for years. It worked – they moved in together, got engaged and were married – she in a beautiful dress with the biggest smile, and he looking as proud as any husband could do. They had bridesmaids and plenty of guests. Their carers helped them to organise everything and were there as part of their family to celebrate. The carers’ children were there as part of the family to celebrate; and what better way for children to grow up – without the lines that often divide those of us without disabilities from those of us with them.
Although I felt really happy looking at their photos I also felt sad and angry that this should be something so special. Why should they have had to wait so long? Why IS it so unusual for two people to do something as ordinary as the rest of us? When asked, they rightly both wanted to know why would we want to celebrate their story. Why should we? Why can’t they just get married and then get on with their lives, like you or I would…? We appreciated their agreement that we could put their story in our newsletter, but we respected their wish for an ordinary wedding followed by an ordinary married life, regardless of our desires to shout about this story from the rooftops. But we shouldn’t have had to shout about it, should we? It shouldn’t be unusual, it should be something we don’t blink an eye about, other than to wish them well.
Every time I talk to anyone involved with Shared Lives they relay the ‘success’ stories of people just living their lives. The people who live with Shared Lives carers don’t necessarily talk about the cruises around the world they have had, the holidays abroad, the travels in the family caravan, the camping trips in France, the meeting with celebrities. They talk about the people they know, the children they live with and help out with, walking the dog, going out with friends, going to church, travelling to the shops, getting a motorbike licence, work, college, decorating, going out for coffee, shopping, cooking, having their hair done, having their own children, finding a partner – all the ordinary things that we take for granted, because we live outside of ‘serviceland’.
Of course Shared Lives isn’t perfect – we have the same struggles that many other providers have; demonstrating outcomes, ensuring our MCA compliance, evidencing our MCA compliance, negotiating payments, considering DoLS, evidencing that we have considered DoLS, writing our contracts for commissioners, evidencing that we are a safe service, writing plans, reviewing those plans, setting more outcomes, demonstrating value for money, evidencing value for money. All of these things need to continue to be done, hopefully in a way that doesn’t impact too much on the lives of the people – who, if we are really successful, need not feel like they are receiving a service at all.
Other than my departure, the other thing that caused me to reflect on my time in Shared Lives was a tweet shared by @sarasiobhan – it was a quote from a book by Dean Shrock ‘Why Love Heals’. I have not read the book but the words struck a chord: “…no other factor in medicine, not diet, not smoking, not exercise, not stress, not genetics, not surgery, affects our health, quality, and length of life more than feeling loved and cared for…”
And I think that just about sums it up.