Every community needs catalysts

My colleague Sian Lockwood OBE is Chief Executive of our sister organisation, Community Catalysts CIC, which has developed a highly effective model for helping local areas to find, grow and sustain community enterprises, some of them micro-scale, as a way of creating completely new care and support choices for local people. The model involves recruiting and training a local enterprise Catalyst who is embedded in the area to find, nurture and network local social entrepreneurs, helping them to set up enterprises and to navigate any bureaucracies they run into along the way. This can often be the missing link between personal budgets and real choice. Sian writes:


“We currently have a programme in Somerset with a focus on stimulating and supporting locally-led home and domiciliary care services in the most rural parts of the county. Domiciliary care services involving personal care are highly regulated and there are real challenges in enabling very small community enterprises to negotiate these regulatory and legislative barriers.  Our Somerset Catalyst has found no shortage of local people keen to provide home and domiciliary care services for other local people. They drew on his personalised and patient coaching to create an enterprise that is legally compliant and  sustainable. In 9 months he has uncovered and supported nearly 70 of these little ventures – each one different, formed by the passion and personality of the entrepreneur and local circumstances. Pearl, for example, runs a florist’s shop in one of the larger villages. Our Catalyst says that ‘she always has the kettle on’ and has become the person to go to if you need some local knowledge and advice. She found that many of the older people visiting her shop were asking for advice about people who might do cleaning, shopping etc and she started to look for local people who might do those jobs. Our Catalyst was able to help her out with putting some simple systems and processes in place that made that self-employment brokerage service safe and sustainable.

Pearl now has 27 local people on her books who between them are supporting nearly 50 older neighbours.”




Culture change is no change

A while ago a wrote three blogs about three ways to avoid real change. Here’s a fourth: talk about the change we need as being ‘a culture change’. Most the most profound and important changes we need to see in public services, we describe as ‘culture changes’. Things like the need for the NHS to be patient-centred (who was it centred on before?); the end to covering up mistakes and blaming other people (‘blame culture’); a shift towards focusing on what people can do and their individuality, not what they can’t do and the label we’ve given them.

What do we mean by ‘culture change’? Generally, it’s code for a change we don’t think will happen and that we don’t think is our fault when it doesn’t. Culture is elusive and dispersed throughout an organisation. Enlightened leaders recognise that they can influence culture by setting the right tone, but in reality culture is always, always trumped by the hard levers and incentives in any system. There is no point in setting a vision based on the culture change of personalising services, if the financial realities of the system are all about lowest unit cost, highest throughput and gatekeeping scarce resources. No point wishing for a no blame culture, if whistle blowers are routinely ignored or bullied.

So Culture is elusive and dispersed. Power on the other hand, is not elusive, and rarely dispersed. It’s generally concentrated in a few easy-to-spot people. It correlates closely to money: the biggest budget centres; the biggest salaries. There may be culture changes which can’t be achieved through power changes, but I can’t think of any. No-blame culture happens when staff and people using services have real power to identify problems and make changes. Services become more tailored when they are designed by the individuals using them. Dignity relies on services being paid for outcomes and good experiences, not lowest unit cost. Systems become person-centred when people with lived experience share in the money through real jobs.

So next time someone in power suggests a culture change is needed, perhaps the appropriate question is, “So how are you going to give your power to someone else, to start that happening?”

Losing the person

I joined Sarah Mitchell of the Local Government Association and Liz Sargeant of the Emergency Care Improvement Programme, for a masterclass looking at solutions to ‘winter pressures’: the ‘delayed transfers of care’ issue which becomes particularly acute in winter, when more older people are admitted and the number of people who are so called ‘bed blockers’ (what a great way to blame other people for a service failure) rises, putting pressure on the NHS which hard pressed social care services increasingly struggle to alleviate by helping people to get back home swiftly and safely.

Liz talked about discharge planning meetings which had ‘completely lost the person’ in a discussion which was all about needs and services. Liz suggested that a good test for this happening was when nobody in a planning meeting was able to say what the person had been capable of before they came into hospital.

This struck a real chord with me. Losing the person happens in many care settings, but particularly those where people enter the service during a crisis. People with learning disabilities enter highly institutionalised, risk-focused Assessment and Treatment Units bearing all kinds of labels and information about what problems and risks they are considered to pose. Sometimes, a few months previously, the same individual has been living ‘well enough’ in their ordinary family home, with little or no support from paid professionals. But their capacity to live this way, and the potential for family and community to support that life, is lost in the crisis which took them in to service land.

Every plan and planning discussion should start with a discussion of what the individual can or has been able to do: what my colleague Sian Lockwood at Community Catalysts calls their ‘gifts, skills and assets’. If people involved in those discussions don’t know what those capabilities are and what the individual’s potential is, they have ‘lost’ that person, and will not build a plan which enables the person to be all that they can be.

Collaborative Healthcare – new report

Last month in his Comprehensive Spending Review, Chancellor of the Exchequer George Osborne announced a £10bn funding package for the NHS.  We and the like-minded organisations we often work with believe that the NHS now needs to invest in innovations which have often been developed by social and community care organisations, but which also have huge potential as new approaches to healthcare. Often these models involve health professionals letting families and communities take the lead, with the professionals providing their expert input and back up when it’s needed. Here, my colleague Sue Eley (who leads on developing Shared Lives for older people, as breaks for family carers and as intermediate care), guest blogs about the report:

Today sees the launch of new publication from Inclusive Change, a partnership between In Control, Community Catalysts, Inclusive Neighbourhoods, Inclusion North and Shared Lives Plus, with support from user-led organisation CHANGE; NHS England; Think Local, Act Personal; and the Coalition for Collaborative Care.  The report, Collaborative Healthcare looks at ways in which asset and strength based community services can have a positive effect on the well-being of the people involved, bringing significant health benefits to individuals and neighbourhoods.

Through a number of case studies, the report describes initiatives which have helped people to live ‘good lives in good places’ – the overall aim of Inclusive Change.  By working at a local level, involving citizens and leaders, improvements have been achieved in many aspects of people’s lives, one of the most striking being people taking more control over their own health needs.

Some of the case studies have shown how, by feeling more connected and involved in their communities, people have lost weight, given up smoking and reduced both medication and their reliance on health services generally.  This in turn has led to significant financial savings for local health services, particularly for Clinical Commissioning Groups (CCGs).

Many of the case studies highlight what can be achieved with a little investment and the startling results some of these interventions have had on neighbourhoods that have previously been considered to be ‘problem areas’.  By focussing on community led solutions and involving people at every level, this report shows how much can be achieved.

Here are five key messages from the report:

  • Personal Budgets alone do not create new choices. There must be an equal focus on building new kinds of intervention, workforces, services and enterprises.
  • Many of the people who could gain most from tailored support need the most support to make choices. Support to make real choices needs building into every interaction with services. Advocacy and brokerage are vital.
  • People struggle to co-design creative solutions in a system which focuses primarily on need and money. Individuals, families, communities and professionals need to learn together how to recognise and build upon their collective assets, capabilities and potential.
  • Choice and control at an individual level needs to be matched by shared responsibility for decision-making at the community and whole-area level. This is not achieved through traditional approaches to consultation or including a patient on a committee, but only through co-production: collaborative conversations right from the start.
  • Services are vital, but they are often only one part of a much wider eco-system of support which includes the contributions of family carers and communities. Almost every intervention can be delivered in a way which results in individuals and their families being better informed, more connected to those around them and more resilient.

The report can be found at http://sharedlivesplus.org.uk/information-and-publications/item/251-inclusive-change-release-collaborative-healthcare-supporting-ccgs-and-hwbs-to-support-integrated-personal-care





Really NICE home care

NICE, which has for some time been the body setting out what good looks like in healthcare, has in recent years been in partnership with SCIE to issue good practice guidelines for social care too. NICE guidelines aren’t compulsory, and their purpose may be changing in an increasingly personalised system in which social care is purchased by individuals and not commissioners, but they are important because they will be used a reference point by councils when they purchase home care. They may give social care providers a new way to push back against the bottom of the barrel prices which social care commissioners have for some time demanded from them, particularly in the care of older people.

One of the recent publications is NICE’s homecare guidelines. The expertise and ethos of SCIE is very obvious in the focus on person-centred, consistent care (interest declaration: I’m a SCIE trustee). This describes homecare as it should be and as the vast majority of homecare providers those guidelines would like it to be. But it is striking that they will be difficult to implement in most state-funded home care as it presently purchased, where councils will not always even pay enough to allow providers to pay the legally enforceable minimum wage and there is a widespread belief that the costs of the new National Living Wage will bankrupt many of those providers which remain in the state funded market.

It is equally striking but how closely aligned the guidelines are with Shared Lives day support. For instance, NICE says that home care should focus “on what people can or would like to do to maintain their independence, not only on what they cannot do… people have preferences, aspirations and potential throughout their lives”. Home care is generally made available to people based on them being able to demonstrate a high enough level of need and contracts tend to specify help to do the most basic tasks to enable someone to live at home with a modicum of safety, not to follow their dreams. Shared Lives day support however, for typically similar costs, enables people to spend much more time together and with much more freedom to do what they enjoy. This is partly because Shared Lives is not paid by the hour and partly because people are matched around a shared belief that they will enjoy each other’s company.

Matching is a key process in Shared Lives and remains rare outside of it, so it is very welcome to read in these guidelines that homecare provision should ‘prioritise continuity of care by ensuring the person is supported by the same home care worker(s) so they can become familiar with them.” Providers should “ensure there is a transparent process for ‘matching’ care workers to people, taking into account the person’s care and support needs, and the care workers’ skills, and if possible and appropriate, both parties’ interests and preferences.” Again most state-funded homecare would struggle to do any of this on current rates of payment, but we would expect every Shared Lives arrangement to do all of this and more. The reality of continuity and matching can be seen in the guidelines about what to do when continuity is not possible, including “informing people in advance if staff will be changed and explaining why, and working with people to negotiate any changes to their care….recognising that major changes (for example moving from home care to use of personal assistants) can make people feel unsafe.”

Shared Lives is one of the few ways in which these aspirations can be met consistently and affordably. Another would be to re-design homecare away from the assumption that it is based around the managed but inevitable decline of an older person’s wellbeing and life, and instead thinking about how home-based care and support from a number of different kinds of organisation could help many people to achieve more independence, resilience and connectivity to their communities, which will cost more in the short term but as models like Buurtzorg in the Netherlands have shown, result in lower rates of dependence and lower system costs in the long term. We hope to see Shared Lives continue to grow as a homecare innovation but we also need more ‘traditional’ models of homecare to be valued, developed and resourced. Without significant social care funding increases, it is hard to see how this will happen.

We need a new kind of ‘ordinary’

This has been a dark week. A man with Down’s Syndrome was considered not worthy to be resuscitated by a hospital (East Kent Hospitals University NHS Foundation Trust), purely because of his learning disability.  The doctor concerned has not been fired: he has had half a day’s training.

Then an NHS audit of Southern Health, responsible through negligence for the unnecessary death of Connor Sparrowhawk who drowned during an supervised bath despite his regular epileptic seizures, found that the Trust routinely failed to investigate unexpected deaths of people in their ‘care’, particularly if they had a learning disability or were older. The implication was clear: the professionals and managers involved saw untimely deaths as normal and the lives lost as unimportant. Their first reaction to Connor’s death was to worry about his mother contacting the media and how they should ‘shape’ any media response. At the time of writing senior managers remain in post.

This and a dozen other well publicised tragedies in NHS care (who knows how many hundreds or thousands will remain unnoticed and unknown?) make the conclusion inescapable that medical establishments are not currently capable of becoming consistently safe and happy places for people to live good lives. This sounds so obvious that it seems ridiculous to type it, but despite Connor’s death, Winterbourne View and all the others stretching back to the Mansell reports which started 25 years ago, we still do not act as if medical institutions and good, ordinary lives are incompatible. We are only just starting to replace the language of ‘improvement programmes’ with closure programmes.

As long as large numbers of people are housed away from those who love them for extended periods, in the charge of people who have no way of getting to know them as anything other than ‘patients’, these failures and in some cases, crimes, will persist and some senior managers will worry more about reputational damage than accountability, learning and compassion. The current state of affairs is pervasive and entrenched but it is not ‘normal’. This blog by Helen Duff on Belinda Schwehr’s site charts her changing view of what is ‘ordinary’ in the care world, through her involvement with a Shared Lives scheme. Read it alongside those news reports and perhaps feel more angry, and more hopeful:
“As I started to learn more about the people who work as Shared Lives carers, and the people who live with them, I also started to hear questions from professionals. I remember one in particular: “aren’t you creating dependency by encouraging people to forge deep relationships with their carers?” Shared Lives carers care deeply about and, dare I say it, often love the people they support. Only recently I spent time speaking to a tearful grieving carer who had spent in excess of 20 years caring for someone who had recently died. She had lost a member of her family and she felt this as acutely as anyone else, regardless of her ‘paid carer’ status.

I started to think about the people who make my life fulfilling; my friends and my family. Am I ‘dependent’ on them? Well I guess yes, in a way I think I am. But does that mean I should protect myself from all hurt, and hold back? Is it better to have loved and lost than not ever to have loved at all? Yes, relationships break down, and it hurts – really hurts. But does that mean I should stop forging relationships that might inevitably cause me heartache?

This led me to think about a wonderful story that shouldn’t even be a wonderful story – we recently celebrated a couple getting married within Shared Lives.” Read the rest at http://www.schwehroncare.co.uk/a-celebration-of-ordinary/

We must transform to survive

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.