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A new health and care system: escaping the invisible asylum is published by Policy Press and launched at Nesta in London with Simon Stevens (video), Chief Executive of NHS England, who said, “This is a profound and timely call for a different relationship between people and the services and institutions of the welfare state. It’s a radical and necessary call to arms for a more human, personal and connected society” Read the introduction here and get a 30% discount code. Our latest short films:

Our £1.75m partnership with NHS England is developing Shared Lives as a new form of healthcare with 8 local NHS trusts. The Shared Lives Incubator social investment programme is investing in Shared Lives in three areas. Lloyds Bank Foundation,  the Big Lottery Fund, SCIE and partners are growing Homeshare in the UK.

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Danger

One of the ironies of safeguarding practice, is that when it’s not done well, it can bring new risks into people’s lives at their most vulnerable times. This is partly because there is – almost inevitably – a power imbalance in any safeguarding process: it’s a time when professionals exert their power, often under pressure and at high speed, and when people can feel like they are least well-listened to, and have fewest choices.

Safeguarding situations are supposed to be when everyone’s focus is on the risks facing the individual, but these situations also feel risky to the professionals carrying them out. It can be career-ending to get a safeguarding decision wrong, and conscientious professionals live with the anxiety of someone suffering preventable harm ‘on their watch’. When professionals and people who use services are both scared, it’s the fear of the person with most power – the professional – which wins out. Social care making safeguarding personal guidance aims to put the focus on the individual’s wishes and best interests, but where professionals’ own fears, and power, remain unspoken, it can be difficult to achieve a genuinely personalised and asset-based approach to safeguarding.

Safeguarding incidents are far rarer within Shared Lives than in other kinds of support (according to safeguarding data from care and health inspectors, CQC), but when concerns are raised, they are not always responded to well. Shared Lives draws on elements of both a service and of family life, with Shared Lives carers taking on a role that is at once professional and personal. The model draws its strength from that unusual combination but (as I wrote about in my book) it means it exists in an ambiguous (liminal) zone between service-land and private life, where professionals can feel dangerously lost as they try to follow rules which don’t quite fit.

Samir (name and identifying details changed) has lived happily for many years in a Shared Lives arrangement, with Maya who supports him with autism, a learning disability and health care needs. There is a busy road outside their house and after breakfast Samir, who needs support with travelling safely, usually sits in a room facing the street waiting to be picked up for his daytime activities. As in many houses, the front door is kept locked for security. Sometimes Samir finds it funny to sneak out and walk to his daytime activities, without telling anyone he has gone. Last time he did this, Maya immediately phoned ahead to say Samir would be arriving on foot and asked them to contact her when he arrived. He got there safely but did not come home. Continue reading

Happy International Women’s Day

Happy International Women’s day from all of us at Shared Lives Plus, to everyone using Shared Lives and Homeshare to create better lives and stronger communities.

Like so much in social care, these models owe everything to the often unsung women who pioneered them, and all those who continue to make them amazing today. Maggie Kuhn invented Homeshare in the US. Nan Maitland spearheaded the UK’s adoption. In more recent years this has been led by Elizabeth Mills OBE of Homeshare International.

Our President, Sue Newton OBE started PSS‘s pioneering Shared Lives service in the late ’70s. At PSS’s centenary recently I learned about its incredible founder, Eleanor Rathbone, who said, ‘What ought to be done, can be done’. So today in particular I’m thinking about all those shoulders we are standing on.

“It’s a natural friendship, you can’t buy that”

I’ve heard more than one charity describe an internal battle between their mission and their survival. A charity or social enterprise’s mission is often first set by a community. Years later, the terms of their survival can feel as if they are being set in an office by people who at a distance from that community. That was a battle that I heard described by numerous public service-facing charities during the consultation with the VCSE sector which we carried out for the Joint VCSE Review. Hospices are at the forefront of that battle: the hospice movement was founded on the view that a good death is a social, not a medical event. The NHS now leans heavily on hospices, which have, like many charities delivering public services, ‘professionalised’: offering highly sophisticated medical care alongside a wealth of social and practical support, in the community as well as in often much-loved buildings and grounds. Hospices bring more funding into the NHS than they receive from it, as well as countless hours of skilled volunteering, but that doesn’t mean that NHS managers in every area approaches them as equal partners.

I’ve been talking with colleagues from the hospice movement who have been working with Nesta and others on a new model of social action: Compassionate Neighbours. Hospices are great at recruiting volunteers who are a vital part of the service and form bridges between the hospice and the community. St Joseph’s hospice noticed that there was a gap in the support which families were looking for that was not easily filled by traditional volunteering. When someone approaches the end of life, particularly if they have a health condition which requires complex care, it can be an isolating experience for a family. Some friends and neighbours withdraw, or worry about ‘intruding’. Agnes said, “I have friends but no-one turns up to see me, why? I needed to go back to the hospital because … if I was in hospital then people would come to visit me.” Where families do not have a strong extended family or friend network, the hospice felt there could be a new role, and partnered with St Christopher’s hospice to develop the model and roll it out to seven other London hospices, and now further afield.

Compassionate Neighbours was inspired by the Compassionate Communities movement, and the Palliative Care Network in Kerala, India. Compassionate Neighbours do what they say on the tin: they form bonds with families who might otherwise be isolated, visiting regularly, listening, providing practical help so that families who might be caring for someone for an extended time can carry on with some of the activities which are important to them. Some will also use their experiences to start conversations with community groups and local people about what people need at end of life, breaking down taboos: “I used to go past [the hospice] on the bus and now I know that it is a place that’s alive and not about death”.

Volunteer roles can often be tightly defined by the charity recruiting them. This can be necessary for some roles, but Continue reading

Am I an ally?

A conversation about power in the relationships between disabled people and their personal assistants, got me thinking about privilege and why it’s a concept rarely talked about in social care.

White privilege was first popularised as an idea by Peggy McIntosh, a (white) academic at Wellesley college in the US, in a 1988 article about white and male privilege, which contained 46 examples such as “I am never asked to speak for all the people of my racial group” and “I can turn on the television … and see people of my race widely and positively represented”. McIntosh says she began by asking herself, “What do I have that I didn’t earn?” That’s a question which makes some white people very uncomfortable. People like to feel that they have earned their achievements and rewards through skill and hard work. Some people hear, or choose to hear, talk of privilege as either an accusation of racism, or as the suggestion that they never worked hard, or that they or their forebears have never struggled. As Prof Kalwant Bhopal of Birmingham and Harvard Universities has written, privilege is not as simple as that. There are layers of privilege and it’s never the entirety of an individual’s story, but it is part of understanding the ‘myth’ of society being post-racial.

One of the reasons I think that privilege touches such a nerve for some people who have it, is that it’s not something you can choose, or choose not to have. One can only be aware of it and adapt assumptions and behaviours accordingly. This is perhaps one of the reasons it’s such a useful, uncomfortable concept: for people used to the privilege of being defined by their individuality, it contains, if only in the most moderate way, the experience of being defined as a member of a group you didn’t choose to join.

So why don’t we hear power imbalances and privilege talked about more in the disability sector? It’s not because no disabled person has ever considered it. Academic, writer and disability activist, Cara Liebowitz, gave five examples of non-disabled privilege in a 2016 article for Everyday Feminism. Julie Weiner lists 50 privileges in Odyssey online magazine and Jessica Niziolek discusses how helpful or otherwise the concept of privilege is in relation to disability at Abilities.com.

Perhaps I can’t recall this idea being raised in two decades working in the social care sector, because I haven’t been listening  – poet and activist Andrea Gibson says, “Privilege is never having to think about it.” But it’s telling that the references I found for this article were not from national social care publications, platforms or ‘official’ policy documents: discussion of this idea feels like it’s been kept on the fringes. I called my book, “Escaping the invisible asylum” because  power structures – through hiding in plain sight – can sometimes be too big to see..

There are many areas of society in which privileged people ignore or deny the existence of power imbalances. But in health and social care, privilege is not only routinely ignored, but also the people with most power get to enjoy our privilege, unchallenged, and even have it codified into job titles, power structures and a whole language and professional culture: it is the (usually non-disabled) professionals who are the ones talked about as making ‘difficult decisions’, carrying out the hard work, dealing with ‘complexity’ and challenges (‘challenging behaviour’). Who earn qualifications in helping other people to live their lives.

This is not to demean or undervalue the work which people do to support others, nor the skill and dedication with which most do it. It is vital, skilled, often tiring, work, which improves and often saves lives. It is under-valued and I know how frustrating it can be to feel held to the highest standards and constantly questioned or challenged about work which is difficult, underpaid and unloved, even when done more for love than money. But we talk the language of empowerment and enabling, without thinking about privilege. McIntosh wrote that “whites are taught Continue reading

Measuring up

Like many forms of community-based or voluntary sector work, we are often challenged to demonstrate our evidence base. The challenge from councils and the NHS to models like Shared Lives, Homeshare and other community or voluntary sector services is roughly, “You may be able to demonstrate what you do is good for people’s health and wellbeing, but why should we invest in it if it can’t demonstrate reduction in hospital bed days?”

One of my continuing frustrations is that we demand from community-based support and preventative interventions, which are usually relatively low cost, a higher level of evidence than we demand of much more expensive formal state services. There are large parts of the NHS, sucking up billions every year, which cannot demonstrate they reduce bed days: in fact, they may be a well-worn staging post on the route to hospital.

Every recent health and care strategy recognises the value of community and voluntary services. That value lies in their distance from hospitals and crisis services and their ability therefore to keep people who don’t need them away from those expensive services and their unavoidable side effects. If those interventions are valuable because they are far away from hospitals in time, distance, and approach, it makes no sense to demand above all else that they demonstrate their impact on those hospitals.

This isn’t to say that we should not ask community providers to demonstrate the evidence of their impact. We have worked with Kent University and the Shared Lives sector to develop an academically-robust outcome measuring tool which is available without charge to every local Shared Lives organisation in the UK. But if we are serious of the value of community approaches, we should recognise that evidence of community impact – increased indicators of heath, wellbeing and resilience – matter. For as long as we continue to measure community services using terms defined by acute and crisis services, we will continue to tie up the lion’s share of limited budgets in buildings which many of us could avoid with a little bit of the right help, in the right place, at the right time.

Shared Lives extends the natural way to connect

I was privileged to be part of our reception in the Scottish parliament.  What Holyrood lacks in history it more than makes up for by being such a welcoming, open and inspiring place, which truly feels like it belongs to Scotland’s people, especially as our host Richard Lochhead MSP was kind enough as he always is to take our members on a tour of the chamber.

We heard from people who live in Shared Lives households who talked about the transformative effects of their relationships. As Louise Kennedy said of Abby coming to live with her and her husband, “Something clicked straight away and the three of us have never look back. I’m not going to pretend that we’re the Waltons, we’re three strong personalisites sharing a home and f course there are going to  be bumps along the way, but these are part of family life and we’re very much a family. Abby is unique, and meeting her is a once in a lifetime experience…to know her is to love her.”

We launched a new report: Staying connected – Shared Lives carers supporting people living with dementia in Moray, Scotland 2019 The quotes from people involved in dementia support and Shared Lives say it all:

  • ‘Loneliness is a terrible thing. Shared Lives extends the natural way to connect’
  • ‘My husband goes out twice a week, with Shared Lives. He also goes to a day centre. The carers in both services are great, but the Shared Lives service is better because he’s getting out and about, going places that he wants to. It’s more stimulating.’
  • ‘I know I’m doing a good job when I see the look on people’s face when I arrive to pick them up. I know some women who have started wearing lipstick again, thinking about what they’ll wear, since they’ve been coming out with me. Before, they’d lost sight of themselves.’

We all need to feel seen, not just for what we need, but for who we are. This only happens when people can get out of their own homes or care services and into the outside world, but even that isn’t enough on its own. After years of stagnation, Shared Lives is now growing in Scotland: let’s make sure that everyone in Scotland who needs support feels really seen again.

Government funds our innovation network

We’re excited to be part of a partnership led by the Social Care Institute for Excellence and the Think Local, Act Personal network, to help local areas scale innovative community-based approaches to social care. This builds on the partners work which has developed models and guides on how to take a whole-area, whole-system approach to innovation, getting away from endless small-scale, short-term pilots which lack ambition. In the current climate where budgets have been slashed and pressures are rising, the most inspiring areas are taking an all-or-nothing approach which recognises that, while initiatives may start small, there must always be a plan to move core resources into the models which work and away from those which don’t. (See Total Transformation, the Asset-Based Area and the family of community-based approaches launched at Social Care Future).

We’ve already had a large number of applications from local areas and from innovative support models and we’ll be building on the 2,000-strong TLAP Building Community Capacity network, which brings together activists, entrepreneurs and organisations working in this space.

Government backing for this initiative is a promising sign that, despite the delays in publishing the Green Paper, the Dept Health and Social Care recognises the need for radical thinking and inspiration for our sector, which is under unprecedented pressure.