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/
The Spending Review has been a good example of how to give bad news: the government’s intention to cut public services and welfare had been signalled in such extreme form that the main headlines focused on how the cuts, which are deep and wide, are nevertheless not as bad as feared.
Once again, NHS England’s CEO Simon Stevens has played a strong game, with the NHS receiving £6bn of its £10bn increase earlier than expected.
And once again, social care has been left in crisis, despite the overwhelming evidence that this is already leading to a million older people and thousands of disabled people no longer getting support, many of whom are languishing in hospital for lack of the support that would enable them to go home safely.
The 2% ‘precept’ enabling councils to raise council tax in order to fund social care will not solve this problem. The maximum it could raise is around £2bn, but that is if every council takes the unpopular decision to raise local taxes, which won’t happen. Where the decision is taken, it will benefit wealthy areas (which can raise more in council tax on high cost homes) three times as much as poorer areas according the ADASS, compounding inequalities which have already seen some council budgets cut heavily whilst others get away relatively lightly. There is £1.5bn by 2020 for transformation in a new Better Care Fund, but this does not begin until 2017.
Whilst the NHS settlement recognises that investment in transformation is needed in order for services to become more cost effective, the social care settlement is lower than the amount all the sector bodies and experts agree is needed just to avoid the widespread collapse of social care providers (the gap is widely believed to be at least £700m a year plus around another billion to pay for increased wage bills when the National Living Wage comes in).
Earlier this year, the government announced it was shelving the Dilnot ‘care cap’ reforms which would have raised the amount of savings people can have before they start paying for social care (currently you pay all of your costs if you have assets or savings of over £23,250) and stopped families from losing all their assets to care costs if they require long term care in later life. This saved the government £6bn and councils welcomed the change on the basis that there were more pressing ways to spend £6bn on social care. But even taking into account the £1.5bn Better Care Fund promise, it appears that £4.5bn of that saving is going nowhere near social care, with councils encouraged to raise more taxes from local people instead. ADASS President Ray James today queried where this money has gone.
Social care badly needs that £4.5bn to stay afloat. But easily as it could be spent on just avoiding calamity, it is time for the social care sector to emulate the NHS approach: urging the government to release that money early in this parliament, and in return setting out how we could use it to develop the care models which will help our ageing population to live well. Our only hope of survival is to make a compelling offer on transformation.
The King’s Fund have today published a report which suggests that cuts to the NHS are resulting in serious deficiencies in mental health care, with acute beds unavailable to those in a crisis and NHS trusts relying on cheaper “community solutions” without there being evidence that they will work. The authors say, “Despite the lack of guidance and evidence, the majority of trusts have embarked on transformation programmes at scale and pace with little or no dedicated funding for the process. Arguably this has resulted in trusts taking a leap in the dark.” ‘Transformation programme’ in this instance appears often to mean mergers of previously specialist teams and increasing reliance within medical services upon unqualified staff. It says this has saved money but probably resulted in worsening outcomes and in the longer term, more demand for acute beds.
The BBC Today programme coverage illustrated this with the upsetting and at times surreal story of a man in his 60s undergoing an acute mental health crisis in which he started to self harm and become suicidal. His family were left to cope as best they could until they felt their only option was acute care. They had to call an ambulance, but instead of taking their relative to hospital, the ambulance crew had been instructed to take him to a ‘mental health café’ which could offer a cup of tea and a chat. As the man’s daughter pointed out, they had tea and chats at home: they were looking for emergency care. The man and ambulance crew sat outside the café, which he was too ill to go into, for two hours, before the crew decided to take him to A&E. Eventually a bed was found and he spent several months intensively supervised in hospital.
As Ministers have themselves noted, there has never been equal value (‘parity of esteem’) placed upon mental health services in comparison to physical health services and there seems little doubt that this gap is widening, with 40% of mental health trusts having experienced recent budget cuts despite small overall rises in NHS budgets. That people can be very ill and still no bed available is unacceptable – and terrifying for families. No one wants to see expert clinical care replaced by an ambulance trip to a café. The report cites The Care Quality Commission’s report on crisis care which found that only 14% of people who experienced a crisis felt that the care they received provided the right response and helped to resolve their crisis. (Care Quality Commission 2015c). Meanwhile, more people are being ‘sectioned’, with a quarter of junior staff in one survey saying they were told it was the only way now to get access to hospital. Where they fail to do this, over stretched community teams are asked to visit people who need round the clock support, which may be leading to higher suicide rates.
All of this makes it unarguable that hospital based mental health services need urgent investment. I think it’s worth noting some points in response to this report though, coming from the perspective of a sector which is attempting to scale up as a community embedded mental health service.
Firstly, there is nothing genuinely transformative about a ‘transformation programme’ which is really a cuts and merger programme. Reforms driven by cost cutting usually shunt costs, rather than cut them, and rarely lead to real change, which always starts with building and releasing the creativity and leadership of people who use services, their families and front line staff. And whilst ‘community’ care is the accepted description of the care models mentioned, it is a misleading one. Continue reading
Today we are all at the sold-out Shared Lives Plus UK conference in Birmingham. Here’s a guest blog from ‘Tom’ who lives with one of Birmingham’s Shared Lives carers and kindly shared his story:
I came to live with my current Birmingham City Council Shared Lives Carer when I was 11 as a foster child and I had experienced a terrible time in care since I was six being moved from one carer to another which I found hard to cope with due to lots of changes.
When I became 18 social services were looking at me moving to be in independent living but I would not have coped as I need support with daily living tasks that aren’t a priority to me. My Foster Carer and family and I wanted to stay together so my Carer undertook the Birmingham Shared Lives Assessment and got Panel Approval and we both came into the scheme. Since that time I have completed my second year of a degree and my Shared Lives Carer has delivered training to other Shared Lives Carers around Autism due to her specialist knowledge.
When I was 20 my friend wanted to go to Japan again. He had been before and knew his way round but the two of us wanted to go. My Carer and I looked at the availability of holidays and chose a package which was very structured which is what supports me. Every day we had a plan that told us where we were staying, what station to go to, what train to get on to get to the next town, what to see in that town, where to find our hotel, what time to leave the hotel to get to the next train etc. Since being with my Carer she has encouraged me to read signs to help me learn and get on the right plane or train.
My Shared Lives Carer supported me to get my money ready so we packaged my money into small amounts and put them in marked envelopes for every second day and put them in order in my money belt. I also carried my passport and tickets with my money and never took it off unless I was in a hotel room.
What if something went wrong? – My Continue reading
Here is a second guest blog from my colleague Lyn (email@example.com) who has led the recruitment and training of our new Shared Lives Ambassadors:
My last blog ended with this quote from Clare, one of our Shared Lives Ambassadors. “If you don’t try anything new, you just end up doing the same old boring things over again and you never learn anything”
Well, we like a challenge at Shared Lives Plus, so we took Clare at her word. One of the first new things we asked our Ambassadors to do was to attend a two day training course with an overnight stay. The twist was we were asking them to do it without their Shared Lives carers.
We all knew that this would be quite a big challenge, not least logistically, but I don’t think any of us anticipated just how challenging it would prove to be.
Intellectually, we got it. We understood we were asking people to take a risk. We did all the things professionals are supposed to do when supporting people to take risks and I for one was very pleased with how brave we were being. What I had forgotten was the real bravery comes from the person actually taking that risk.
And our Shared Lives Ambassadors ramped up the risky new experiences pretty quickly.
Travelling on a train. Tick. Travelling on a train without a supporter. Tick. Changing trains to make a connection. Tick. Dealing with missing your connection because your first train was cancelled. Tick.
And then there was:
Staying in a hotel without a supporter. Staying in a hotel room alone. Evacuating the hotel when the fire alarm goes off at the crack of dawn. Having to get up and go to work despite being woken at the crack of dawn by a fire alarm. Going to work at all.
Well, they rose to the challenge. Our seven Shared Lives Ambassadors travelled the length and breadth of the country to spend two days with us, Angela from Inclusion North, and inspiring self-advocates Karen Flood and Bill Heron.
It was amazing Continue reading
Here is a guest blog from my colleague Lyn (firstname.lastname@example.org) who has led the recruitment and training of our new Shared Lives Ambassadors:
Our work with the Shared Lives Ambassadors is well under way. We’ve had two days training together, Dipan and Paul have represented people who use Shared Lives at our Parliamentary reception and they, alongside Nick, Clare, Lisa, Michael and Phoebe are gearing up for our UK conference in November.
Pretty soon they will be writing blogs of their own about the work they are doing but while I can still get a word in I thought I’d tell you how we got to where we are.
As everyone involved in Shared Lives knows, Shared Lives is a partnership between Shared Lives carers, Shared Lives schemes and the people who live in Shared Lives and we are always banging on about the importance of this. Shared Lives Plus is a membership organisation with our members being Shared Lives carers, Shared Lives schemes and Homeshare programmes.
By listening to our members we get to know what is working and not working at a local level. We support them to talk to, support and learn from each other. They shape the direction of our work, to influence national and local decision makers and ultimately to develop a more personalised social care system.
Which is great but it is also ironic that the only people who aren’t currently members are the people we owe our existence to, the people who should be driving forward the shaping of the social care system, the people who use Shared Lives.
We wanted to do something about this Continue reading
This is a guest blog from Claire Morphet of Rochdale’s PossAbilities CIC Shared Lives scheme. Claire writes:
In April of this year I was approached by Harold’s daughter Lynne who gave up her job as a college lecturer to look after her dad. She has had her house adapted to support his needs and completely changed her lifestyle. Previously, when Lynne had to go in hospital, Harold went for respite in a nursing home. Although Lynne had invested many hours researching and visiting nursing homes, when Harold returned home, she described her dad as ‘losing more of himself’. Now, Lynne’s wedding was planned, but she had intense fears of leaving her dad in a traditional respite setting again.
The first time I went out to visit Harold and Lynne, Lynne described her dad as she remembered him: an amazing dad and grandad who loved children. When Harold greeted me and gave me a little dance, I was moved by the kindness in his face. Throughout the time I spent with Lynne and her dad the love that she feels for him was evident. We chatted about Shared Lives and Lynne immediately put her trust in us. What Lynne and I experienced over the next couple of months was one of the hardest professional journeys I have taken and possibly one of the toughest journeys Lynne has had to make. During these months Harold was introduced to two Shared Lives carers, but both had to withdraw from providing support following changes in their own circumstances. Matches do not always work out, but it’s our role to keep trying until the right match is found.
Karen lives very near to Harold and visits the same Tesco that Harold regularly enjoys to visit. Her husband, Vincent, remembered Harold as a former next door neighbour when he was a child. During the two weeks that Harold stayed with Karen, we kept in regular contact. Following the short break, Karen said, “It was an absolute Continue reading
Chief Inspector of Social Care, Andrea Sutcliffe writes a fantastic blog every couple of weeks about her travels around the world of social care. This week, Andrea wrote about speaking at the our Parliamentary reception for Shared Lives. Andrea says, “I am very happy to give my support to a model of service that is truly person-centred and can achieve such great outcomes” and goes on to quote from our event and inspections of Shared Lives schemes. We all loved this blog: read it here. Thanks Andrea!