Invaluable

We have been campaigning with our members to persuade the Treasury to adjust their Self-employed income support scheme (SEISS) scheme, which replaces lost profits for self-employed people losing work during COVID-19, for Shared Lives carers, who can apply to the scheme, but typically aren’t eligible for any replacement income, because the Shared Lives tax break usually shows their profits as zero. This has left Shared Lives carers feeling unvalued and contemplating leaving the sector, just at a moment when we desperately need to sustain and expand home-based alternatives to hospital and care homes.

So we are utterly disappointed that the SEISS has not been adjusted by the Treasury to address this, despite our very positive engagement with the Dept of Health and Social Care, and the support expressed for the Shared Lives sector by the Minister of Care Helen Whateley and cross-party MPs, including the Shadow Health team and Labour party leader Sir Keir Starmer. We have been contacted by MPs of all parties as a result of the campaigning which Shared Lives carers have been doing on this issue locally.

In parallel to our national lobbying, we have been working with councils to encourage them to use their social care continuity funding to help Shared Lives carers who have lost income, and also the even larger numbers who are providing more support than ever to someone who lives with them, and cannot at present access day support services. We have many examples of councils doing this and we are talking with the Dept Health and Social Care, and the Local Government Association about how to help more areas to follow suit.

Money can be a touchy subject for Shared Lives carers. There are still areas where people have been caring without a pay rise for years: pre-COVID we were working on this with members, asking councils to sign up to a pledge to give Shared Lives carers the same pay increases as other social care workers. I’m struck by the attitude of one or two areas who seem to feel that because Shared Lives carers give so much of their lives, and don’t expect to be paid for every hour spent with someone, that they shouldn’t really care about money. Some of our members said recently that they feel treated with suspicion if they raise the subject.

The truth is that we all need to live. The fact that our members are often staggeringly generous shouldn’t be a reason to take them for granted, as one area did when they wrote a Shared Lives carer in her 70s to say that with day services closed, the person she cares for would be home with her all day now, and they expected her to provide this extra full time job of care on a ‘voluntary’ unpaid basis.

Shared Lives works so well because it allows people to separate the money that they are paid for the formal part of their role, from their relationship with an individual who many describe as ‘just one of the family’. Nobody goes into Shared Lives for the money. Let’s make sure during this crisis that money is not the reason that anyone has to leave the caring role they love.

I never dreamt of being so independent again

Tired of waiting for the government to publish its much-delayed Green Paper, the Local Government Association has published its own. The Lives We Want to Lead launches a public consultation on the funding question which can seem like the politicians’ only focus, but also asks what social care in the future should actually offer and deliver. The LGA say they seek “to start a much-needed debate about how to shift the overall emphasis of our care and health system so that it focuses far more on preventative, community-based personalised care, which helps maximise people’s health, wellbeing and independence and alleviates pressure on the NHS.”

The paper includes this story illustrating how Shared Lives can take a situation deemed ‘complex’ or ‘challenging’ and make it simple, helping someone get out of hospital and back to the community: “I was living with my partner, running a B&B when I had a serious stroke and later two minor heart attacks. After four months in hospital, I was depressed, frail and my memory and cognition had deteriorated. We knew I needed more support with daily living than my partner could provide. I was unable to return home and it made me frightened about my future, with clinicians uncertain about my further recovery. I wanted to live locally, so I could continue seeing my partner and I missed my dogs.

“The Shared Lives scheme matched me, with two trained and approved Shared Lives carers who shared my sarcastic sense of humour, had dogs, and lived close by. They helped me through it all. When I arrived at their home, I never dreamt of being so independent again. I couldn’t walk down the drive. Now I can nip up to town. My Shared Lives carers helped me gain strength and confidence, walking a little bit further each time, until I could walk independently again. They helped me adapt to my memory loss with strategies for managing money and banking, and supported me to make meals and manage my diet.

“Since then I have booked a holiday and travelled on my own. I am very optimistic about life and planning a move into my own flat. Without the Shared Lives scheme I would have undoubtedly spent longer in hospital, had less choice about where I lived, and had a slower recovery. It is so important that money is available to ensure that schemes like this exist.”

The paper draws on data from our My Shared Life outcomes measuring tool which found that:

  • 92 per cent of people felt that their Shared Lives carer’s support improved their social life.
  • 81 per cent of people felt that their Shared Lives carer’s support made it easier for them to have friends.
  • 73 per cent of people felt involved with their community and 93 per cent felt their Shared Lives carer’s support helped them feel more involved.
  • 84 per cent of people felt their Shared Lives carer’s support improved their physical health and 88 per cent their emotional health.

I was asked to comment as Chief Executive of Shared Lives Plus and independent chair of the Joint VCSE Review, and said “Local government and the voluntary, community and social enterprise [VCSE] sector share a vision for social care which helps us all to live good lives in our own homes with the people we love. Immediate investment is needed to stabilise social care. Then councils and the VCSE sector must work with people who need support and their community organisations to codesign a social care system which intervenes early, sees the whole person and can stay with people and families for the long haul. Human, effective and sustainable
approaches already exist: great councils have been pioneering their development. Now they must be scaled up and become the norm.”