Shared responsibility for health: troubling language and unmet need

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Re-reading the long read 'Shared responsibility for health – the cultural change we need’, I realise much more clearly that it says many of the right things: the need to rethink staff skills and roles, how the change that’s needed goes to the heart of medical decision making, and so on. So why did I initially feel uneasy? Why does some of the language make me anxious?

This response, shared by other people I work with and talk to, is clearly not based on the authors’ intention, which is hard to criticise. It is clearly good that The King’s Fund, traditionally focused on NHS policy, is branching out into what actually creates health or illness. The realisation that health and wellbeing are often made, maintained or regained outside of health services is at the epicentre of much voluntary and community services (VCS) activity, and therefore at the core of my work.

So why does it feel to me that the term ‘shared responsibility’ in its current form does not sit well alongside long-established work on the need for a more holistic view of health and for better partnerships to deliver better care? Maybe because it suggests, or at least implies, that the health and care system currently shoulder too much responsibility for people’s health and wellbeing, and that people are overdependent on health or care services?

This – implied – assumption that the system takes too much responsibility doesn’t resonate with my experience of how much unmet need is out there. The experience of how hard it can be to access health and care – to get a GP appointment, to get a referral, to get seen, to get a test result, to get an ambulance to turn up, to get a meaningful conversation, to get follow up, to get rehab, to get a home visit, to get help getting out of bed, to have a rail fixed to your stairs – is entirely absent from the argument. And working with patient charities, it is so clear how much frustration, anxiety and distress are caused by these difficulties. And how quality and safety are undermined by ever higher access threshold criteria. A friend with a severely anorexic daughter tells me that you now need to be so skeletal as to have a 50 per cent risk of dying before you can access eating disorder services in London. Are we okay about that?

More importantly I fear that despite the authors’ best intentions, a focus on reducing dependency, without being carefully contextualised can easily be used to argue for less support, less resource and fewer services. After all, universal credit was introduced to reduce dependency and help people gain control – and it is leading to more poverty for more people, as is now well evidenced. So how does the concept of ‘shared responsibility’ work in the political and social context into which it is published? We are living at the tail end of nearly a decade of austerity. Every single non-medical need I can think of has been delegitimised. A right to stable and decent housing? Come off it. A right to having enough money to buy at least food for your children? No longer. A right to attend a sufficiently funded school? Gone. Libraries? Parks? Children’s centres? If you need services that aren’t healthcare, you risk being labelled a ‘skiver rather than a striver’. 

Suffering as a consequence of possibly well-intended reform agendas doesn’t seem to be a deal-breaker, otherwise the explosion of food banks and the well-reported distress of disabled people going through benefits assessments would have stopped some of the excesses of welfare reform. And they haven’t. In a system where vulnerable people suffering isn’t a deal breaker, it is dangerous to argue for a reduction of dependency.

With many other advice services cut so much they are near impossible to access, for many people their GP is the only place you can go with a complex, maybe ill-defined problem that in all likelihood includes a health dimension. The Richmond Group of Charities did some research with people who are likely beneficiaries of social prescribing (frequent users of GP services, lower socioeconomic backgrounds). I was taken aback by how aware our focus group was of the fact that their GP was ill-equipped to deal with certain issues. But with Citizens Advice Bureaus open for just two hours per week, where else were they supposed to go? What low-threshold, no stigma, relatively holistic services are out there where you could say ‘I have run out of money, my children are going crazy, I am in constant pain, I don’t understand what my consultant said to me the last time I had ten minutes with them, and now I have this vague but crippling anxiety that stops me from leaving the house’?

Ask your health professional friends and they will say that this is not an uncommon set of complaints – they are real needs. This is not about people needing to take more responsibility. I completely understand that the way out of a spiral of dependency and overmedicalisation is not to do lots of things ‘to’ the above imagined service user. But this person probably doesn’t need less support, they need different support: kind, patient, open-ended, encouraging and enabling. 

I know that this is what The King’s Fund is aiming at, and that much of the shared responsibility framework names the elements that are needed to get to such transformed services. So maybe this framework itself needs a different framing: one that starts with the acknowledgment that people who have health (and often also other) problems have a rightful expectation that they will be supported at a time of need. That we will try to understand what is going on, and that we will together find the most effective way of helping them live a good life. Maybe we need to start from the realisation that our independence is often a function of our basic needs having been met, and that we are a long way from meeting the needs of those who rely most on health and care services.

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