Are we human…?

This week a spotlight has shone on the NHS at its worst.

A recurring theme, in both the NHS’s failures, and its most innovative and inspiring practice is how we inject humanity back into organisations and care. This is as true for community as buildings based services. To rise to the challenge health services need to respond to more than just medical needs, and to recognise patient as well as professional expertise. Its easily said but less easily done.

In the context of personal health budgets, reinstating the human touch can be transformational. I am struck by the number of times people for whom personal health budgets have worked well tell me ‘it means I can be a mum/dad/partner/daughter again’. Their illness or condition came to dominate their lives. Through being able to co-design their support with professionals, as equal partners, they got back something of themselves they thought they had lost.

Its a sad fact that health services can get in the way of people and families functioning at their best. At the moment, my colleagues and I are running events to share what we have learnt from the personal health budgets pilot. Jo Fitzgerald has been opening them. Each time I hear her speak about her experience as Mitchell’s mum, I hear another detail about their lives – as they used to be – that shocks me.

With round the clock support necessary for Mitchell, the intrusion on the family’s lives can only be imagined by those of us who have not experienced it. The rhythm of their life was set by staffing policies that confined them to tight geographical boundaries, and shift patterns that meant that everyone always had to be home for 3pm in order to do handover. It would be difficult to just do the normal things that regular families do with those kinds of restrictions. And this is before the silly stuff – like the policy that meant that Mitchell had to be formally identified and this witnessed before his medication could be administered. As Jo points out the likelihood of someone climbing in the window and inserting a trachy tube to pretend to be Mitchell was small.

Obviously not everyone’s experience of this kind of health service is so problematic… but for many people with high health needs, the nature of the support itself can have some unfortunate side effects.

Being able to put Mitchell at the centre of things, and organise his care around his specific medical needs but also his relationships, personality and interests has made a massive difference. A difference not just to him and his family but also the staff paid to support him – who have stuck around much longer than used to be the case.

It is difficult, especially in these cash strapped times, for health services to be seen to spend their budgets on anything other than pure clinical care. We’ve all seen the headlines. Drum kits, season tickets, ipads… Where people are given the chance to think broadly about how to meet ‘health and well being outcomes’, the results can be great.

In the personal health budgets pilot evaluation people who had a significant amount of money spent on them were given more control over how it was spent. They decided to spend a greater proportion of it on non-clinical services than commissioners would have. What happened? They managed to maintain their health on a par with the control group who were receiving traditional commissioned services. Not only that but they used less of other health services. For example, they needed to go into hospital less. All while increasing their ‘social care’ outcomes and psychological well being. In layperson’s terms, I reckon, this means they ‘got a life’.

Is it the role of the NHS to pay for things that aren’t solely medical? I think it is. Whether its ‘compassion in nursing’ ‘dignity in care’ or ‘developing person centred organisations’ – at the heart of these initiatives are attempts to tap back into what really matters, and is often simple, true and powerful – our uniqueness, interconnectedness and belonging in our communities.

“As we start in our working lives we often have a more human gaze – as our knowledge and experience increase we adopt a more medical gaze – as we realise the complexities of life and illness and the difficulties people face… we seek to redress that balance”

From training presentation for health professionals on the Health Foundation‘s self management resource centre

“If someone else had chosen the exact things stated in my budget, it wouldn’t have had the same impact on my life; Its the fact I’ve thought about and chosen for myself. I’ve taken back control and purchased back, if you like, the self-worth I thought I’d lost forever. My life now isn’t about how I feel, but about what I can do next!”

Sandie, from Norfolk pilot, in a talk. See her video here

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