Money makes a huge difference to the efficacy of the NHS, but the power of people has a far greater effect on patients receiving high quality care, says Alex Fox
Patient driven care
The NHS’s challenges are as big as they come: demographic changes; a £100bn plus budgets that will not balance; and a million plus workforce under increasing strain.
NHS England’s first flagship programme under new chief executive Simon Stevens has been for care organised at the smallest and most personal level.
Integrated personal commissioning, or IPC, will build on the long established personal budget programme in social care and newer rights to personal health budgets for people with long term conditions.
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There are already nods towards personalised approaches in every area of healthcare, which is now expected to be more patient centred, more collaborative and involve more participation and choice.
A run through of these buzzwords could suggest an unrealistic offer of new rights and choices which will further raise expectations at a time when austerity threatens the promise of universal, free healthcare.
‘NHS’s five year plan is a suggestion of new ways in which responsibilities can be shared’
But IPC is intended as part of a much deeper culture change, reflected in the NHS Five Year Forward View, which is not just a promise of new rights, but a suggestion of new ways in which responsibilities can be shared, so that people with long term support needs and their families can collaborate with professionals to achieve health and wellbeing.
The NHS can benefit from lessons in personalisation hard won in the social care sector, as well as from the expertise of pioneers in healthcare who have been working on this agenda for years. Previously regarded as operating on the fringes, these innovations must become a core part of every area’s transformation strategy.
The first lesson to learn from the social care experience of personalisation is that individual control of a personal budget can help people make different demands on services, but this is meaningless unless supply is also reformed at the same time.
Where individuals with complex continuing healthcare needs have large, stable personal health budgets, they have been able to design new models of care provision, with a new workforce of thousands of personal assistants, but most families need access to specialist brokerage support to help them take on that responsibility manageably.
‘People can make more effective, creative and prudent use of health resources than service planners’
The personal health budget pilots have demonstrated that people can make use of health resources in more effective, creative and prudent ways than service planners; supporting them to do so should become a core function of future commissioning.
Those with smaller, or more fluctuating, personal budget allocations are likely to need to purchase support from organisations or gather together to purchase collectively.
Here, commissioners must reimagine their roles as convenors and networkers, who find ways for people with long term conditions and their families to identify and articulate the support they need to live well.
They should then help them to link up with others who share similar needs or goals so they can pool their collective purchasing power, as well as linking with providers that have the potential to work with them to design interventions that will work.
It may be necessary to find new providers to enter the market or support “spin outs” and start-ups to become established and sustainable in response to local wishes.
Implicit in these approaches is a view of people with long term support needs as not only having expertise in their own individual needs, but also having value to contribute to local planning and, in some cases, to delivery.
‘It may be necessary to find new providers to enter the market to respond to local wishes’
For instance, the project Community Catalysts supports organisations, frontline workers and people who use services to develop community enterprises that meet local people’s needs, often by harnessing their creativity in inventive ways.
This can be a dementia nurse who has set up an outreach service for older people in her own neighbourhood. She can get to them easily and flexibly, and bring her local knowledge and community links.
Change is a project that supports people with learning disabilities to take on employed peer roles as trainers and educators.
Leeds City Council is also taking personalisation beyond personal budgets by helping personal budget holders to link up with its user led neighbourhood networks to co-design personal support plans that make better use of community resources in support packages.
The intention is to create less service reliant support packages, addressing issues like isolation, which underlie health challenges such as depression or falls. Any savings created are shared for reinvestment into more supportive communities.
‘A move towards this asset or capability based ethos is perhaps the most profound and challenging change envisaged’
Hertfordshire County Council is also one of many councils with a virtual marketplace for personal budget holders and providers, but it has won plaudits for its work shaping that market and ensuring it is accessible to innovators.
A move towards this asset based or capability based ethos is hard to capture in a central policy initiative but is perhaps the most profound and challenging change envisaged in the IPC programme or the forward view.
In social care the culture change has been uneven, with user led community interest companies existing alongside highly traditional block purchased care.
A capabilities based approach is not just a belief in what individuals can do, but also recognition of the huge contribution that families, and in some cases communities, could and do make.
For many people with long term conditions the overwhelming majority of care is provided by family and friends, who typically do so with little of the training, support, time off, equipment and emergency back up that professionals take for granted.
Given the huge cost of providing emergency support when family care breaks down, this suggests that one of the most challenging changes needed for IPC to be a success will be the transfer of resource availability, not just from hospital based services to those based in the community, but also to families and agencies able to work with them to construct care packages.
‘Every intervention should be arranged to support individuals, families and communities’
This will not always mean closing services to transfer resources elsewhere - and it is unfortunate that “personalisation” and “transformation” have proved such convenient euphemisms for “cuts”, to which they are unrelated - but it should mean that every health and care intervention is arranged to support individuals, families and communities to develop and sustain their capabilities.
There are 8,000 approved Shared Lives carers across the UK who provide regulated personal care for 12,000 people with learning disabilities and other support needs.
They do so through sharing their own homes, family and community life with the individual who needs support.
This is done following a matching process that aims to set up supportive relationships that can be lifelong. This family based approach is used for stroke rehabilitation, dementia day care and even an acute mental health service.
‘The promise and challenge of IPC is to create real and meaningful ways to share responsibility’
Rather than requiring health services to increase the volume of what they are doing beyond a level that is sustainable for their workforces, commissioners would instead seek greater value by requiring them to demonstrate additional impacts such as the extent to which they:
- leave people better informed that they understand their condition, the intervention, their choices and where to turn for further help;
- help people to keep and grow their community connections;
- inform and connect family carers to training, support and emergency back up - the assumption should be that family carers need everything a paid professional would expect to have to provide great care; and
- recognise and measure negative impacts on informal support networks and the individual’s resilience - for instance, through care being offered at inconvenient times, in institutional locations, or in ways that stigmatise or reduce someone’s confidence.
The promise and challenge of IPC is not to create new forms of competition, but real and meaningful ways to share that responsibility. This must be a two way process in which commissioners share their control of jealously guarded budgets but, in return, are able to work with the whole resource of their communities.
This could, for the first time, allow them to be part of addressing societal health challenges like the epidemic of loneliness in old age or persistent health inequalities in communities labelled “hard to engage”.
Millions of family carers and thousands of social entrepreneurs make remarkable contributions despite “the system”.
What could a genuinely people powered NHS achieve?
Alex Fox is chief executive of Shared Lives Plus and a member of the Think Local, Act Personal partnership