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A right to a personal health budget – it’s a step towards greater self-determination in the NHS – Luke O’Shea

Luke O’Shea, NHS England’s Head of Patient Participation, explains why a “quiet ministerial announcement” is so significant.

Last week in Parliament, ministers quietly made an announcement : From October next year, thousands people in receipt of Continuing Health Care funding will gain a new legal ‘right to have’ a Personal Health Budget.

The announcement went largely unnoticed by the media, patients and professionals.  Usually Personal Health Budget announcements generate Marmite-like reactions – either heralding the end of the NHS as we know it, or being seen a panacea for a person-centred NHS. But last week there was little reaction.

However, this is a significant announcement for a group of people who have less ability than most to determine the path their lives take.  The hope is that Personal Health Budgets will change that. But will they?

It made me reflect on an important experience I had working as a commissioner in the NHS. It was a trip to meet a man about my age receiving Continuing Health Care.  I think about him quite a lot.

He’d been given a diagnosis of ‘treatment-resistant schizophrenia’ and had been moved around the country for over 10 years because of his complex needs.   After a three hour drive, I arrived at the care home where he had lived for the last five years.  We got on well and talked quite a bit.  We sat in the kitchen and I asked him about his hopes for the future.  He wanted a flat of his own.  However, he’d been told for a long time that they were hoping to sort out a flat, with little sign of progress.  He was stuck.

For the NHS, the care home placement was a success.  He was high risk but had had no hospital re-admissions in recent years.  But it did not offer him what he wanted most, to build a normal life.

When the Personal Health Budget announcement was made it occurred to me that his placement budget would have paid for a flat, a full-time support worker and employment support or training, with some left over.  I wondered whether a right to have a Personal Health Budget would have started a different conversation that day I met him.

For me, the announcement on Personal Health Budgets is part of a wider historic movement where people whose lives have been constrained by the state have been offered greater self-determination.

Why would the NHS not want people to actively determine the path of their own lives?  Should people be allowed to choose and buy their own care?

Well, there is a tension.  They might choose services that fit round their lives and not what suits the NHS.  They might decide a job is more important to them than managing the likelihood of hospital re-admissions.  But what does the evidence say?

The University of Kent controlled trial of Personal Health Budgets, involving 2,000 people, showed patients with PHBs out-performing the control group, and even had fewer hospital admissions.  It seems that patients can be experts too.

The Lancaster University Poet Survey also showed significantly improved well-being for most carers, who tend to bear a huge personal responsibility for this group.  It’s rare that we measure the impact of an intervention on families of patients, but here we have.

So we need a bigger debate about Personal Health Budgets and personalisation in the NHS.  The evidence is good, but there are tensions and the implementation challenges are significant.

Personal Health Budgets are not a panacea, but they do start a different kind of conversation.  And they are not going away.  This announcement is part of a wider historic shift towards personalisation and greater self-determination across public services, which once introduced is very hard to go back on.

So let’s hope this announcement is one small step towards a time when everyone, regardless of health need, is given the chance to determine the course of their own lives.


luke-osheaLuke O’Shea is Head of Patient Participation at NHS England.

He has previously worked in national policy and strategy roles at the Department of Health and as a commissioner in a local authority and the NHS.

Prior to that he worked in a range of government departments including leading work on early year services at the Prime Minister’s strategy unit, as a private secretary to a children’s minister and leading cross government working on ageing.

He describes as his proudest achievements his “modest role at the inception of Family Nurse Partnership in the UK and of my work on ageing”.

 

 

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2 comments

  1. Felix Greaves says:

    Thanks for a good, thoughtful blog. I agree with the call for further debate.

    However, I would caution on the strength of the evidence for personal health budgets.

    In the DH funded evaluation, personal health budgets were associated with improved quality of life and psychological well-being (with 90% confidence). (1)

    Seeing as mortality was 8.7% in the personal health budget group and 6.6% in the control group (33% higher in the intervention group, p = 0.109), it’s lucky they didn’t use an 89% confidence to assess significance. Otherwise they would have found that personal health budgets increase mortality too.

    Refs:
    1) Forder J, Jones K, Glendinning C et al. Evaluation of the personal health budget pilot programme. PSSRU discussion paper. November 2012. http://www.personalhealthbudgets.dh.gov.uk/_library/Resources/Personalhealthbudgets/2012/PHBE_personal_health_budgets_final_report_Nov_2012.pdf

  2. Lol Butterfield says:

    Interesting reading Luke. I support personal health budgets because they do give people a degree of autonomy and control over decisions relating to their care. A compromise must be found at times if this somehow conflicts with associated ‘risks’ professional advice etc but surely this can be achieved through dialogue and accommodation. It is true it is not a panacea but when you hear horrendous stories of care homes abusing or neglecting residents the thought of PHBs and being able to stay at home is reassuring. My background is a lifetime of mental health nursing working, mostly in the NHS, and for the past 10 years my passion has been tackling the stigma and discrimination of mental health. I think the ‘positive patient experience’ is critical if using NHS services and I was involved in the NHS Document ‘Now I feel Tall’ 2005 highlighting how emotional experiences of care must never be underestimated.If I can be of any assistance to you I would like to?