What is Shared Lives like?

Paul and Lorraine have moved into Linda’s family home and share their busy lives with Linda’s family. Film: http://inclusivefilms.org/our-films/a-real-home-a-real-life/paul-and-lorraine/

Our voices, our choices, our freedom

Three years after the Winterbourne View abuse scandal was exposed, the lack of change remains depressing. This report from Mencap and the Challenging Behaviour Foundation makes grim but essential reading. In particular, some NHS trusts and clinicians appear to be immune to all efforts to raise their expectations and inspire creativity. The numbers of people with learning disabilities admitted to NHS institutions is actually on the rise. This is far from just an NHS issue, but it’s clear that NHS England and its new CEO need to get serious about their leadership role in addressing what is a worsening scandal. Even if the abuse at Winterbourne View was a rare exception, the deeper scandal was that health and care commissioners and the clinicians which wield such a great amount of power over the lives of people labelled ‘challenging’ felt that spending years locked away from family, community and anything resembling a life was an acceptable long term form of support, not to mention a defensible spend of £5,000 per week.

I’m not sure any sector, including the voluntary sector in which I work, can really hold its head high in the light of three years of inaction. Whilst a lot of the strongest calls for change are coming from charities, self-advocacy groups and grassroots activists like the 107 Days campaigners, not every voluntary sector and rights organisation in this space seems fully focused on building the pragmatic collaboration which is really needed, with small ‘p’ politics and positioning appearing to be an issue in some quarters.

One of the most promising initiatives however is the conference which people with learning disabilities are organising and leading, under the auspices of user-led organisation CHANGE and JK Rowling’s charity, Lumos. It takes place in Leeds on June 26th: Our Voices, Our Choices, Our Freedom! The conference will gather people with learning disabilities together who all share the wish to see institutions for people with learning disabilities finally consigned to history.

The minister, Norman Lamb, will be there, listening and speaking, as will Bill Mumford who leads the Post-Winterbourne View Joint Improvement Partnership. The thing which makes me think this event won’t be ‘the usual’ though is that it is being organised by and for people with learning disabilities, who are coming from all over the country. It’s still not unusual in the sector to see conferences about learning disabilities which fail to have a single speaker with a learning disability involved, let alone in the lead.

The people at CHANGE have a habit of getting you to think differently, in my experience. This is partly because they try to deliver as much of their work as they can through their ‘co-worker’ model in which someone with a learning disability works on equal pay and conditions alongside a non-disabled co-worker. This shouldn’t be unusual but it is: few ‘user-led’ organisations employ people with learning disabilities in paid leadership roles, rather than as volunteers (even organisations whose aims are to help people with learning disabilities find employment!). Usually conference audiences are dominated by managers and commissioners, but at the CHANGE event most people will be people with learning disabilities, with one or two commissioners who have agreed to attend not in their usual capacity, but as supporters of local citizens, whom they will then support to feed back to local leaders afterwards. There are also plans afoot for other ways for participants to spread the messages from the day.

CHANGE believe that increasing assumptions about the need for institutional care will be challenged only through people with learning disabilities taking paid and leadership roles in ‘their’ sector. That has to be right, because if there’s one kind of commissioner or inspector guaranteed to take a dim view of being ‘stuck’ for years in an institution, it would be a commissioner or inspector who has a learning disability.

Just part of the family – Guardian feature

Shared Lives Surrey features in a great Guardian piece on Shared Lives.

Since moving in with Alex and Greg, Clare has become rooted in the community, and made a strong network of friends – including reconnecting with people she went to school with. She has a big family, with “lots of sisters”, and sees them once or twice a week. “Since I moved, my life has changed. It has got better,” says Clare. “On Tuesday mornings, I volunteer at the Sure Start centre, with babies, and we do baby massage.” She goes to a community centre a couple of mornings a week, and is also doing an adult education course. And she has a boyfriend, who she met at a community group. “It was love at first sight.”

Full  article here.


An ownership revolution for public services?

Prof Peter Beresford of Brunel University chairs the user led network, Shaping our Lives. We sometimes find ourselves debating the practicalities of personal budgets and resource allocation systems, but also share lots of common ground when it comes to the values of personalisation. We co-authored an article published in the Local Government Chronicle website on May 14th and on the TLAP blog which argues for an ownership revolution in public services.

A sad day for community action – but not the end

This blog has been co-authored by Sian Lockwood of Community Catalysts, Alex Fox of Shared Lives Plus, Julie Stansfield of In Control, Ralph Broad of Inclusive Neighbourhoods and Sam Clark of Inclusion North. Our organisations’ partnership is called Inclusive Change.

The recent closure of the high-profile London and Suffolk Circles is sad news – but does not suggest that community-led action is an impossible dream as some commentators are saying.

At its most durable, community action is driven by the commitment and passion of local people keen to make a difference to their community. Take Debenham village in Suffolk for example. People realised that friends and neighbours with dementia were having to leave their community for care and came together to take action.   Over 100 people came to the first village meeting and agreed a long term vision of extra-care facilities in the village. They appointed an action committee and mandated them not just to deliver that vision but also in the meantime to ‘just do something’! With very little financial support from statutory sources, they have set up a range of activities and supports which help friends and neighbours with dementia to stay at home for longer. The pop-up dementia-friendly restaurant and local home-care agency staffed by local people snared my imagination but there are many other small and large initiatives that make a real difference to people’s lives – for example people really appreciate the local librarian’s visit to the bi-weekly Carers Café to help people access web-based information about dementia as well as the emergency weekend hotline staffed by volunteers. The action group (now 80+ strong) has learnt that initiatives work when they are led by local people – well-meaning help from professionals can be the kiss of death to a new project. As the co-ordinator of the action group Lynden Jackson says ‘professionals should only do what professionals can do – we’ll do the rest and tell them when we need them’

In our experience, the appetite for community enterprise is alive and well, but it needs a little encouragement and support to make a real difference to people’s lives. We know that sustainable enterprise starts with passion and a desire to make a difference – together with the kind of gritty determination to drive through the inevitable barriers that comes from an engagement of the heart. Local authorities do need to make an investment in that support – but just as importantly commit to getting out of the way when things are working well, and letting local people get on with delivering local solutions.

So the closure of initiatives as well-regarded and well-resourced as these Circles programmes is certainly something that should cause concern, but not despair. Community-action is still alive and well – and it’s the only hope for many of the lasting changes we need to see to our local areas.

Our five recommendations for community action that will last beyond the initial investment are:

  1. Community action has to be shaped and led by local people and their priorities: guidance and models brought from outside can be useful for giving people a sense of the possible, but must not be prescriptive.
  2. Community action initiatives must build on local initiative and must at all costs avoid replacing or undermining existing initiatives. Community asset mapping is always the first step.
  3. Community initiatives have to be affordable in the long term. Councils should review all existing and proposed initiatives to ensure they are sustainable, particularly where they have received significant initial investment or outside help.
  4. Where the investment case for community action is based on future savings offsetting high running costs, there must be clear evidence that the savings will be tangible and achievable. Local agencies must have a Plan B if savings aren’t achieved.
  5. Community action must have support at all levels: from the community, the officials and the politicians. Projects are most likely to be real and lasting where the initiative is community-led and addresses local people’s priorities.

New research on Shared Lives and older people

Our Director of Support and Development, Anna McEwen, writes with an update on the launch of new independent research into Shared Lives for older people from Kent University:

89 year old Betty described Shared Lives as a lifeline, allowing her and her 91 year old husband with Alzheimers to keep their dignity as they aged.  Betty got to know a Shared Lives carer who supported her for a few hours a week.  The Shared Lives carer got to know Betty and her husband which meant that when Betty had to go into hospital suddenly, her husband was able to go and stay with the Shared Lives carer.  This gave Betty peace of mind and her husband a personalised short break with someone who he knew well at a difficult time when his wife and main carer was in hospital.

PSSRU (Personal Social Services Research Unit) at the University of Kent have recently finished a 2 year research project looking at Shared Lives as an option for older people who have social care support needs.  This project was funded by the NIHR School for Social Care Research, and began before Shared Lives Plus offered dedicated support to schemes developing this area of work.  The work was not commissioned by Shared Lives Plus but in response to wider work around personalised services that deliver good outcomes at low cost. It builds on the interest and learning generated by an earlier dementia project led by Shared Lives South West and Innovations in Dementia.

The research consisted of questionnaires sent out to all older people using Shared Lives at the time to get a sense of the quality of life people using Shared Lives were experiencing and their views on the service, and then some more detailed work with 3 schemes.  The questionnaires on quality of life were compared with people using other social care services via the Adult Social Care Survey to establish the quality of life of older people using Shared Lives when compared to other forms of social care.

74% of older people using Shared Lives rated their quality of life as good or very good, and just 4% rated bad. When compared to other forms of social care and average social care quality of life (based on ASCOT), older people using Shared Lives had better overall quality of life on a par with people who do not require social care support.

Barriers highlighted by the research for expansion of Shared Lives for older people included: lack of referrals, lack of awareness of Shared Lives, familiarity with other (more traditional) social care services, budget structures and pressures in local authorities, eligibility criteria, lack of Shared Lives carers with appropriate accommodation and/or skills and perceptions of safety & accountability.

Opportunities for expansion of Shared Lives for older people included: active promotion of Shared Lives, awareness raising to social work teams, specialised training for Shared Lives carers, support from senior managers, Care Bill implementation and evidence of the benefits of Shared Lives.

This research took place at a time when Shared Lives was still a little known option for older and disabled people, and Shared Lives Plus was a tiny organisation supporting the sector.  The samples used to compare quality of life were very small and there were a number of limitations to the research because of this, although the research clearly shows how much Shared Lives is valued by the older people currently using it.

However, if the research was repeated starting in 2014, I think we would start to see a much bigger picture.  Shared Lives Plus has secured funding to offer dedicated support to the sector to develop services for older people in the form of a development officer and production of a series of tools, resources and business cases to support Shared Lives carers, schemes, commissioners and external providers.  This support has kick started a dramatic increase in schemes who are now diversifying to offer support to older people and people living with dementia, and we expect to see the numbers of older people using Shared Lives rise significantly over the coming years.

This research gives us some really useful and interesting baseline information to start from as we seek to support the development of the Shared sector, and the quotes from older people using Shared Lives speak for themselves:

“Being made to feel part of a family gives me confidence, a feeling of being wanted and not alone.”

“Shared Lives gives me something to look forward to and a purpose in life”

“It’s a lifeline, it’s contact, it’s help to live, it’s support and very valuable”

“Living with a couple in Shared Lives keeps me out of hospital.  If I am troubled with anything I can talk about it with my carer who encourages me and completely supports me”

MPs find out about Shared Lives

Before Christmas, Shared Lives Plus provided postcards to all the local Shared Lives schemes. Shared Lives carers could send the postcards to their local MPs and councillors, inviting them to come to visit the scheme to find out what Shared Lives was all about. It worked really well in several areas and Nancy Plowes, who runs the scheme in Bradford and Chairs our England committee, has kindly written a guest blog about what happened next, drawing on the words of two people who use Shared Lives in the area:

In January this year we sent out publicity postcards to all the Shared Lives carers on the Scheme so they could send them on if they wished.  So far two MPs, Philip Davies and David Ward, have replied and have met with Shared Lives carers, family members and service users.

They each spent over an hour with us and paid good attention to what people were saying. They were particularly interested in what a difference Shared Lives makes to peoples lives. One of the service users, Lisa*, has given permission for us to share her thoughts.

Lisa was referred to us when she had been admitted to emergency respite. Lisa has a lot of skills and can appear to be very capable and in control, but it soon became clear that she was unravelling. She moved in with the Shared Lives carer, Claire*, in November 2013, and we thought that if she stuck it out to the New Year that would be a success. She is still there now and though she has no intention of moving soon, she has a more realistic idea of where she might want to live in the future.

Lisa says that she feels her life has turned around over the last six months.

  • My depression has gone
  • I have stopped smoking
  • I am going to the gym five times a week
  • I am eating healthily
  • I have reduced my medication massively (soon to come off my last tablet)
  • I am starting to build a relationship with my family
  • I am more happier in myself
  • My relationship with my boyfriend is getting better
  • I am learning to cook and bake

Claire also supports another woman through Shared Lives, Rebecca* who has been important in helping Lisa settle. Rebecca showed Philip Davies the fabulous photomontage of her horse riding, a new skill she has learnt and of which she is justifiably proud.

The second group met MP David Ward and he was struck by the passion of the Shared Lives carers as they talked about the quality of support they provide.  At that meeting a family member described how the Shared Lives services have helped her to support her brother who went to live with her following the death of their mother. At first, he refused to consider staying overnight anywhere other than at home, but after a while of spending time with his Shared Lives carers, he saw them as his friends and agreed to stay one night and now goes for a week at a time.

Both MPs said that they will pick up the promotion of Shared Lives as a positive model of care and support and they will use their influence to look at how best to raise the profile.

Nancy Plowes Team Manager Shared Lives Bradford

*Names have been changed


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