What is Shared Lives like?

A Shared Lives household show what a good life can look like. Film: http://vimeo.com/108993357

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/

Lean on me

In case you missed it, Anna McEwen has written a great blog about the Secretary of State for Health’s visit to Shared Lives in Newham on the Dept Health social care site:

“Brenda supports two men (Kevin who has learning disabilities, and Louis who is recovering after a brain tumour) who live with her as part of the family.

We were also joined by Shared Lives carers Elizabeth, who supports visually impaired man Dipan, and Evangaline, who supports John, an older man with mental health issues.

We sat in Brenda’s garden in beautiful sunshine while Mr Hunt chatted to Brenda, Elizabeth and Evangaline about why they joined the scheme and became Shared Lives carers. He then turned to Dipan, John, Kevin and Louis to find out from them about what life is like in Shared Lives…..”

Full blog here: https://socialcare.blog.gov.uk/2015/07/22/lean-on-me/

Shared Lives International?

Regular readers will know that our goal at Shared Lives Plus is to double the number of people using Shared Lives in the UK, ultimately seeing Shared Lives become the go-to option wherever someone needs support and accommodation long-term. We have resources to aim for that goal in England where we’re on track to double from 10,000 to 20,000 people over five years. If we achieve that, Shared Lives will still only be a small part of UK social care provision – 2% rather than 1%. So what would it look like if Shared Lives was the main form of social care?

I’m writing this in Vancouver airport, on my (long) way home after a four day trip to British Columbia, where Shared Lives, or Homeshare as they more generally describe it here, has grown in a short space of time from hundreds to thousands of people, and is now used by well over 50% of people with learning disabilities who live in some form of supported accommodation.

What does this look like? My visit to Canada was courtesy of leading Homeshare programme provider, posAbilities, and in the two households kindly took me to visit, shared living looks just as moving and powerful as great Shared Lives looks in the UK: people choosing to treat each other as family and in it for the long haul. Warmth, fun and a huge amount of laughter.

Robbie and Gerald live in a high rise apartment of the kind you’d rarely find in a similarly leafy suburb in the UK. Down the hill, hundreds of logs are being herded under the suspension bridge across the mighty Fraser River, from the vast cedar forests inland. On the horizon a single snow-capped mountain could be right out of Middle Earth. There’s much that feels foreign to me, but when we talk about Charlie and Douglas, whom Robbie supports full time, he says they are ‘just part of the family’, which couldn’t sound more familiar. Charlie’s art hangs on the walls and Douglas shows us his precious family pictures. Douglas needs dialysis, but Robbie and Gerald aren’t phased: they’ve both taken training in order to do this at home, which will be less disruptive and should have better health outcomes. They are confident that Douglas won’t let his health challenges, nor being in his ’80s, stop him from his annual swim in the open ocean on his birthday, nervous as it sometimes makes them!

In a very North American clapboard house, a confident young woman called Tanya Read more of this post

Heart and head: The case for community micro-enterprise

This guest blog comes from Sian Lockwood OBE, CEO of our sister organisation, Community Catalysts:

Community Catalysts people are passionate about and ambitious for community micro-enterprises that invest in the health and well-being of their locality. We have been working since 2007 to support their development and growth and have seen over and over again the impact that they have on people’s lives – and on whole communities.

Alongside our development work we are the network organisation for community micro-enterprise and ventures and have links to over 750 community entrepreneurs, each with a unique combination of skills, knowledge and experience, driven by different interests and passions and shaped to the needs of people in their community. Each with a different story.

Stories are an important way to convey the impact that community enterprise can have on people’s lives. They appeal to people’s hearts and open their minds and imagination to what is possible. But in the financially constrained world in which we operate winning hearts is not enough. Local authorities considering investment to support the development and growth of community enterprise need a hard-headed evidence based business case.

We are delighted then with the two reports published recently – one by Birmingham University and the other by TLAP – which go some way to developing the ‘head’ case for community micro-enterprises with a focus on health and well being.

The Birmingham University report Does Smaller mean Better? Evaluating Micro-Enterprises in Adult Social Care is on a research project looking at the value and contribution of community micro-enterprise in contrast with larger more traditional care providers. It provides evidence that confirms conclusions drawn from our own work with community micro-enterprise over the last 8 years:

  • Community micro-providers offer more personalised support than larger providers, particularly in home-based care
  • People using community micro-enterprises were more likely to get help to do the things they valued and enjoyed, compared with people using larger services
  • Community micro-providers are better than larger providers at some kinds of innovation. They were more flexible than larger providers in the way care in the home was delivered (eg staying to have a meal with someone rather than simply preparing food and leaving)
  • Community micro-enterprises offered support in potentially marginalised communities, with some set up and run by people from those groups e.g. disabled people
  • Micro-providers offer better value for money than larger providers

Read more of this post

A shared life is a healthier life

Over 200 Shared Lives carers took the time to tell us about the difference they make to people’s health, for a proposal we are developing to get Shared Lives established in the healthcare sector. 73% said they had received positive feedback from an NHS colleague about the difference their support was making to an individual’s health, such as:

  • The GP stated that my care was remarkable and hoped I would continue to support this person.
  • I offer respite care to someone with bi-polar disorder. The CPN noted that staying with me when she has been in a depressive state has meant not having more formal support from the mental health team.
  • He has been her dentist for 40 yrs and has never seen an improvement until she came to live in Shared Lives.
  • The Mental health nurse reported that the person concerned was a changed woman: more confident and happy. The nurse said that she thought it was wonderful how this lady was able to voice her own opinions as she had never done this previously.
  • The nurse said “it’s obvious he is confident and comfortable with me as they have not been able to do this procedure successfully before”. We are very proud of him and his progress.

Here are some of the most common reported health outcomes. I fond some of them jaw-dropping: The person adopting healthier lifestyles, including dozens of accounts of significant weight loss, managing diabetes and giving up smoking

  • I am helping someone go to the gym twice a week as she is very overweight. She went by herself for the first time yesterday
  • Took a very obese service user to Slimming World. Helped her with her diet, and she lost 6 stone while with us.
  • Diabetes controlled through diet rather than medication. Weight loss through exercise and healthy eating.
  • One lady has lost 5 stones in weight in 5 years. Her BMI is perfect and she has much more energy to enjoy things she loves doing like dancing. One man has been supported with physiotherapy and orthotic shoes to help with pain management and posture, he used a wheelchair to visit shops. He does not need to use a wheelchair any more.
  • Both our long term residents have now been discharged from Asthma clinics and have lost 4 and a half stone between them
  • I helped achieve his aim of giving up smoking after he had smoked for 40 years

Tackling misdiagnoses and making reductions in unnecessary medications

  • When S came to us she was on a lot of medication. I asked the doctor if we could review it and she came off 3 different medications and she is much more awake.
  • She had been on epilepsy medication for 30 years before she came to us for no obvious reason. She has no seizures.
  • They thought she was deaf until I investigated further and found she hadn’t had her ears syringed for over 5yrs. Easily sorted out by visit to Practice nurse at GP and her hearing is fine now.
  • This person was in a wheelchair due to being over-medicated, because his doctors thought he was very severely epileptic, and subsequently massively over-medicated. We found out that most of his “seizures” were behavioural, and they gradually reduced his epilepsy meds. From having around 4 “seizures” per day, he hasn’t had any for 12 months. He now walks and attends college. The GP stated that this was directly attributable to care we had put in place.

Improved health and wellbeing leading to reduction in use of NHS services

  • The gentleman who is with us has now finished 6 monthly hospital visits and just sees the nurse once a year.
  • All of the people we support have been signed off from community support nursing because their conditions are being kept monitored and controlled while in our care.
  • Neither gentlemen have needed A&E whereas under their previous arrangement, they’d used it 4 times in 2yrs.
  • One gentleman was admitted to hospital about once a month, but not at all whilst living with us

Serious illnesses which had gone undiagnosed, including several instances of cancer, being diagnosed and treated

  • Alerted GP to early cancer symptoms
  • The cancer patient received treatment “just in time!”
  • One person had prostate cancer. We recognized the symptoms (that he must have had prior to moving in with us!) we supported him throughout all his treatment and getting to and from hospital.

Read more of this post

Micro-enterprise: care and support on a scale that’s “just right”?

This is a guest blog from researcher Catherine Needham of the University of Birmingham, who is launching the first research to look at whether size of provider organisation makes a difference to outcomes and cost-effectiveness. The summary is very readable and should be of interest to all care commissioners. Dr Needham writes:

It has long been evident that large-scale care provision on a time-and-task model has not been delivering care and support which is personalised and leads to valued outcomes. This week, a team from the University of Birmingham, of which I was a part, launched findings which solidify the evidence base about the benefits of micro-enterprise over larger providers.

Twenty-seven care organisations in England were included in the study, covering a range of sizes and functions, including day activities and support in the home. Interviews were done by academic researchers working alongside people with experience of local care services on a co-research model. Among the 143 people interviewed were owners, managers, members of staff, carers, and those receiving care services, including older and disabled people.

Findings show that micro-enterprises offer more personalised support than larger care services, and contribute to better outcomes (measured using ASCOT, the Adult Social Care Outcomes Toolkit). These benefits stem from micro-enterprises having greater continuity of staff, greater staff autonomy and greater accessibility of managers compared to larger organisations. The research also found that micro-enterprises offer good value for money: their hourly rates were on average lower than the larger comparator organisations, helped by low overheads.

The micro-enterprises in our sample talked about what had helped them to get started, and what barriers they faced in staying in business. Many had benefitted from local micro coordinators, part-funded by Community Catalysts, which helped them understand care sector regulation and funding.

To keep going the micro-enterprises had to market their services to potential users as they didn’t have a formal contract with the local authority in the way a large care companies did. Most people supported by micro-providers had a direct payment or were self-funding, and had found out about the provider through word-of-mouth or local advertising. The relatively low take-up of direct payments by older people highlights the need to provide alternative routes into micro-enterprise. Social workers, GPs and other care professionals need to be informed about micro-enterprises operating close-by so that they can match up people with support in their local communities.

Like most academic studies, the research answered many questions but generated others. In particular I was struck Read more of this post

This much we know

We know that we need prevention not crisis response – but that commissioners will not invest consistently in prevention, however much we want them to.

We know we need workers to act autonomously and take risks in the individual’s best interests – but that most large organisations will create systems which rule this out (because risks to organisations invariably trump the risks most important to individuals).

We know we need people to see themselves as sharing responsibility for their own health and wellbeing – but that the majority of professionals will feel they should look after the people ‘in their care’, and will risk criticism if they don’t.

We know that the most effective interactions are those we have with people we have had time to get to know, which can only ever be a small number – but that planners will always seek to work at the largest possible scale and see contact time as a reducible unit cost.

We know that to do the right thing consistently, we all need to act as if we are group of humans, but that we all act like we are the subjects of an all-powerful system.

In fact, there’s no such thing as the system: there’s only us and the relationships we have. So we don’t need to – and can’t – try to change the system. Instead we need different relationships with our peers and new relationships with people we haven’t previously thought of as our peers.

Here are four things I think we can do if we’re serious about radical change:

Shift power in the form of money: through handing control of money wherever possible to individuals and small groups, and spend money currently spent on procurement giving them the support they need to spend it creatively.

Shift power in the form of knowledge: through collecting data about the outcomes which matter most to local people and making it available to them in usable ways.

Shift power in the form of accountability. If now we feel accountable first and foremost to inspectors and finance managers, instead we need to ensure we account for ourselves regularly to groups of people who use services and other taxpayers, face to face.

If we do these things, we might just create spaces in our public services for the emotions which make the most difference: empathy, compassion, love.

Minister meets Shared Lives carers in Newham

Thanks to Anna (anna@sharedlivesplus.org.uk), our Director of Support and Development, for this guest blog about a visit  from Rob Wilson MP, Minister for Civil Society, who went to Newham Shared Lives scheme during Carers Week and met one of our youngest Shared Lives carers and the family she supports:

Newham Shared Lives scheme is one of 12 Shared Lives schemes in England involved in our carer project with a focus on supporting people who live with a family or unpaid carer to use Shared Lives for respite or short breaks.  The project is funded by the Cabinet Office.

Brenda is a young Shared Lives carer who currently supports two people living with her in a long term arrangement, and supports Rhianna for regular short breaks.  Rhianna is a young woman in her early twenties with a learning disability and visual impairment who lives at home with her Mum, Debbie.  Rhianna also has a younger sister who is nine and two older siblings.

During the visit Debbie described how Shared Lives has been a lifeline for her.  She has a really close relationship with Rhianna, and that’s visible for all to see, but has her own health issues and a younger daughter at home too.  Debbie told us how she’d always had trouble in the past with respite services, Rhianna hadn’t enjoyed going there and she’d had issues with trusting the staff.  She now says how she has absolute trust in Brenda and how much Rhianna looks forward to going to stay for the weekend.  These weekends give Debbie an opportunity to have a rest and spend some quality time with her younger daughter too.

Rhianna told us about all the good times she’s had since going to stay with Brenda, including the O2, bowling and getting out and about. Brenda said they always decide together at the start of Rhianna’s stay what she’d like to do.  When the Minister asked Rhianna what she’d like to do with Brenda this weekend she said to go to Southend for the day which Brenda thought was a great idea!

The Minister asked Brenda about why, as a young (twenty-something) person she’d decided to become a Shared Lives carer.  Brenda explained that a friend of hers was a Shared Lives carer and she’d seen the effect, and she wanted to do it too.  She explained that she gets as much out of the experience as she gives, and that instead of doing things by herself she gets to do them with the people she’s supporting, and that she’s seen much more of London since becoming a Shared Lives carer than she had before.  Brenda actually lives with her Mum and uses the spare rooms in their home for Shared Lives.

For a young woman like Rhianna, to be supported by a young Shared Lives carer like Brenda is an amazing opportunity.  She is supported by one of her peers and it’s more of a relationship with a friend than a traditional care provider.  I know Brenda does much to link people in to what’s going on in the local community and that Rhianna gets to do the things that all twenty-somethings want to do, the sky really is the limit.

It really was an inspiring visit and the Minister took time to talk to Brenda, Rhianna and Debbie about their experiences, before they all took selfies.  Shared Lives offers such a personalised experience designed around the individual and is all about the relationship.  Although they’d only known each other a few months, Brenda, Debbie and Rhianna were obviously really close and had shared so much.  It’s a big deal for any family carer to trust someone else to support their family member, but the relationships we see every day in Shared Lives make that so much more possible and allow that “good life” that we all want.

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