Are personal budgets really the best way to personalise health care?

Personal health budgets have been embraced enthusiastically by government ministers as a means of giving patients greater choice, flexibility and control.

In a speech in July 2010, Paul Burstow, Minister of State for Care Services, described them as the embodiment of what the government aims to achieve: 'Personal budgets encapsulate what we represent...our single, radical, aim...to change the relationship between the citizen and the state...to do less to people, and more with them.'

This enthusiasm is shared by the Secretary of State, Andrew Lansley, who recently announced his intention to roll out personal health budgets to all those receiving NHS continuing care by April 2014 and ultimately to a wider range of patients. Personalisation will be achieved by enabling patients to make their own decisions about how to spend the NHS funds allocated to their care.

It's an attractive vision, but is budget-holding – with its related complexities and risks to the budget holder – the best way to achieve greater responsiveness to individual needs?  The fourth interim report from the Personal Health Budgets Evaluation may sound some alarm bells.

The evaluation team's latest report covers the early experience of 58 patients from 17 primary care trusts who have participated in the scheme since its inception. Many of those who were offered personal health budgets responded positively to the offer of greater choice and more control, but the prospect of budget-holding caused confusion and anxiety for others. Lack of information before and during the care planning process exacerbated the problem. Two-thirds of participants were not told how much money they had been allocated before they were asked how they would like to spend it. Many were not given a choice of how their budget would be managed and in some cases were not given illustrative examples of permissible expenditures. A few patients were disappointed when their requests were turned down by the primary care trusts' assessment panels, or when the care planning process led to long delays in the delivery of agreed services.

In some cases personal budgets were used to enable people to live more independently, for example, by employing carers, purchasing mobility aids, or providing travel to support groups or day centres. Others used their budgets to pay for treatments such as physiotherapy, speech therapy, podiatry or exercise classes. These uses of NHS funds are probably uncontroversial, but the fact that the budgets were also used to pay for services, such as reflexology, reiki, aromatherapy, electronic personal organisers and music lessons, will no doubt lead to some raised eyebrows.

The scheme is still in an early stage of development and the costs are currently manageable, but when the government's ambitious plans are fully realised, personal budgets may start to shift resources into complementary therapies or non-health care items, potentially making some of NHS services non-viable. People – especially the clinical commissioning groups who will have to underwrite the personal health budgets – will quickly lose enthusiasm for them if the clinical benefits are not abundantly clear, or if they enable choices only for those patients who have the confidence and capacity to take on individual budgets at the expense of those who do not.

Meanwhile, the Year of Care Programme has been working quietly without ministerial fanfare to demonstrate that personalisation of care for people with long-term conditions is possible without the use of personal budgets. This programme – which has won the enthusiastic support of the Royal College of General Practitioners – has been developing and testing approaches to collaborative care planning and micro-commissioning, using diabetes as an exemplar. The programme enhances annual health checks by incorporating shared decision-making and self-management support, and ensures that patients are offered a choice of local NHS and community services through responsive commissioning. Those involved in the programme are clear about the benefits: a better experience for patients and real changes in self-care behaviour; improved knowledge and skills for professionals; greater job satisfaction, better organisation and team work, and improved productivity.

What the Year of Care Programme has demonstrated – and those promoting personal budgets may still need to learn – is that changing the dynamic between patients and health systems to produce responsive, personalised care involves significant cultural change and application of the principles of shared decision-making. These include a defined menu of effective options, evidence-based information on risks, benefits and uncertainties, and supportive decision coaching to help patients make personally-relevant choices. Simply disaggregating budgets and allocating them to individuals is never going to be enough.

Read Angela's publication: Making shared decision-making a reality

Keep up to date

Subscribe to our email newsletters and follow @TheKingsFund on Twitter to see our latest news and content.

Comments

#598 Mo Smith
Chair of Trustees
Regenerate-RISE

As the founder of Regenerate-RISE (Reaching the ISolated Elderly), I have found that personal budgets within social care, in some respects, are hampering the choice of older people rather than enhancing it. We are a thriving day care/outreach provision and have 50% of our clients who would be eligible through FACS to a personal budget. The majority do not want to inform Social Services how much money they have and therefore would have to pay the full recovery cost, which currently is £72 a day to attend a specialist day centre. The result of this is that we have clients with substantial needs attending our service. Now with the new that Wandsworth Council want to direct their money to social care - through Open Access services - they have decided not to fund lunches and not to fund transport and for our 40 clients a week who use the transport, which is a backward step for those who are using our transport - as without it, they would become isolated. The answer from the Council is that people with substantial needs should go to the specialist day centre, but they choose not to. They don't want to be assesed, they don't want to pay the full amount if their savings are beyond the limit - personal budgets have complicated significantly the social, voluntary day care provision that enhances the lives of many.

Secondly, older people should not have the responsibility of employing their carers - they will be taken advantage of. Generally speaking, they don't understand personal budgets, they don't seem to be told how much they have to spend and when you are 90 and over, you don't want the hassle. Whereas personal budgets I believe works well with younger people, I have not seen a positive impact with older people.

Thirdly, we find that those who do manage personal budgets have enough for their home care, but not enough for their day care - it is not the solution for the care of the elderly.

#599 Simon Lawton-Smith
Head of Policy
Mental Health Foundation

A good summary of the tensions within the personal budget debate.

At the Mental Health Foundation, we have supported personal budgets (particularly for social care, with a bit more caution on health care, as it is early days and the impact of personal health budgets on Clinical Commissioning Groups has not yet had any serious consideration). What the evidence to date suggests is that people with mental health problems and people with learning disabilities are among those who can benefit most from having a personal budget - and there are some good stories of how a personal budget has significantly improved people's lives - but are often the groups who are least represented among those who get offered them.

This may be at least partly because NHS and local authority staff make false assumptions about the ability of people with mental health problems and people with learning disabilities to make choices about their care, and to manage a personal budget. It is also, of course, true that many people (the evidence suggests older people in particular) are nervous at the idea of managing a budget. Someone with an anxiety disorder, for example (and there are over 2 million such people in England) may be anxious enough about managing their weekly income as it is. But this simply means that they need to be reassured about the possibility of someone managing a personal budget on their behalf.

Angela also makes a very good point about good personalised services not necessarily requiring a personal budget to be in place. But what it does require are health and social care staff who are willing to work in genuine partnership with patients - some of whom may not have full capacity some or all of the time - to come up with jointly agreed care plans. That requires time, patience and specific skills, and is not always going to be easy. but it will need to happen if people with mental health problems and people with learning disabilities are to have the same opportunities for personalised services - including personal budgets - as other patients.

#600 Kevin

This has been copied & pasted from an email sent and use by me. (Content below has been changed, item deleted)

With regards to the news item http://www.communitycare.co.uk/Articles/30/09/2011/117526/personalisatio... , other sites list http://www.scoop.it/t/personalisation , http://www.thementalelf.net/publication-types/survey/personal-health-bud... and http://thesmallplaces.blogspot.com/2011/09/how-transparent-are-personal-...

My analysis (PBDP) looks and reports on a different approach of, obtained through a Freedom of Information request and can be verified by London Councils own data http://www.londoncouncils.gov.uk/services/datasharelondon/stats/LSDS/def... , the DoH transformation cost of £520million for the UK, £42million in London has seen a poor return given the population in London is about 7.5million people. Is this reflective across the rest of the UK?

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/di...
and
http://www.pssru.ac.uk/publications.php , http://www.scie.org.uk/ and http://www.in-control.org.uk/ are some of the national programmes funded by HM Government.

http://benefits.tcell.org.uk/ lists additional information on direct payments, health, ASG, Carers, Supporting People and more.

#601 Kevin

@KF @ MS , A FOI request to London Councils on its FACS criteria level may be of interest and use http://www.whatdotheyknow.com/request/information_on_personal_budgets#in...

Also I refer to my FOI and the anlysis/results of the number of people being support by condition. It is estimated that about 250,000 people in the UK are supported by DP/BP, this is suggested to increase upto 1 million people. The ballance here is that of http://benefits.tcell.org.uk/forums/many-benefits-should-be-increasing-n... , could these costs be centrilized by Central Government as these benefits would be used to pay for TV license, water, fuel costs etc. (daily living) . This analysis looks at the SROI, where post code lottery lay and suggest that more reporting of SROI, open/transpancy should improve services/be sightful on how and where resources are allocated/spent and how services can improve/adapt to meet the needs of the many rather than the few (Quotation by spook (Star Trek) (hope copyright is not broken)

Taking in the larger picture of http://benefits.tcell.org.uk/forums-keywords/benefits/general-news-infor... and http://benefits.tcell.org.uk/forums-keywords/benefits/social-care-rights... I suggest these issues are complex and diversed which requires to meet the needs of the UK populaton set by Parliament.

#603 Smriti Singh

Why is endorsement by the Royal College of GPs presented as an indication of success? GP practices are private businesses which deliver a health service - for a price. They represent the interestes of GPs, not those of patients. It is because of this that personalisation of services (which is wider than giving people direct payments) is essential.

#608 Sue Roberts
Clinical Lead
year ofCare Partnerships

One of the many interesting things about working on the Year of Care Project has / and continues to be the wider effects of a programme that embeds personalisation into the heart of routine practice (i.e. replaces what we do now) rather than be adopted as an ‘add on’. In addition to the benefits at individual (patient and professional) and team / clinic level, the approach stimulates wider changes in thinking about service design and commissioning for people with long term conditions across local systems of care, truly built around individually expressed need. This can build a consensus for change from below, more comfortable for clinicians than the perception of financial drivers imposed from above.
At the same time, the collaborative care planning process at the heart of the Year of Care approach provides a ‘gateway’ to the appropriate use of interventions such as Personal Health Budgets (and similarly perceived options e.g. telehealth, non traditional community resources). By truly providing an approach to supporting people to decide what is the best course of action for them, it has the potential to mitigate against the danger that well intentioned projects get high jacked by old habits of prescriptive thinking… ‘thou wilt have a personal heath budget’, ‘you will be empowered’.
Sue Roberts Clinical Lead Year of Care Partnerships (enquiries@yearofcare.co.uk )

#611 Kevin

FYI, a follow response from the DoH

Details of the Transforming Adult Social Care grant to Local Authorities, over the period 2008/9 – 2010/11 are contained within the following Local Authority Circulars (LAC):

LAC (DH)(2008)1:
http://www.dh.gov.uk/en/Publicationsandstatistics/Lettersandcirculars/Lo...
LAC (DH)(2009)1:
http://www.dh.gov.uk/en/Publicationsandstatistics/Lettersandcirculars/Lo...
LAC(DH)(2010)1: http://www.dh.gov.uk/en/Publicationsandstatistics/Lettersandcirculars/Lo...

The final year of the grant for 2010/11 was included within the baseline allocations to local authorities. In 2010-11 the Government allocated the largest part of this revenue grant – £237 million but also allocated an additional £33.5million capital allocation to help councils with some of the associated infrastructure costs.

Orginal request can be found under http://benefits.tcell.org.uk/forums/personnel-budgets-direct-payment-lon...

#612 Kevin

Data and statistic information is listed by London Councils.

This area of the website has been developed to promote access to statistical information about social care and health in London and encourage benchmarking.

There are three main sections in this area of the website. Please click on the relevant link to view more.:

Links to official statistics
London self directed support statistics
London Information Exchange Group
Implementing the Care Funding Calculator in London

http://www.londoncouncils.gov.uk/services/datasharelondon/stats/default.htm

#614 Richard Blogger

I think it is important to say right at the beginning that healthcare and social care are different. There may be an argument to say that the two should be integrated, but that is another topic.

Social care is not free; healthcare is free-at-the-point-of-use. This distinction is vital when we talk about personal budgets. I think it is a huge red herring to use people's experience of personal budgets with social care as a way to justify personal budgets in healthcare.

In social care people are used to the concept of top-up, so a personal budget gives them some peace of mind that they know what the local authority will pay, and a guarantee that the money will be paid.

In healthcare, we know that the NHS *will* pay. This is the covenant that patients have with the NHS. A personal budget, however, gives a different message. Whatever reassurances the government gives, a personal budget says "this is how much your condition is worth". Rightly or wrongly, patients will interpret this as a limit. Will we find that people will "save" their budget (ie self-restrict their treatment) just in case they need it later?

#615 Richard Blogger

I am interested to see how personal healthcare budgets will work in practice. Again, I urge any respondent to limit any replies to *healthcare* and not social care.

I have a stable long term condition (type 1 diabetes). So what will a personal budget give me? Will there be a budget to pay for: HbA1c tests, kidney tests, peripheral nerve damage monitoring, retinopathy monitoring, blood pressure tests? I already have choice about which provider performs this monitoring (*three* providers tout for the monitoring of my eyes every year: the local hospital, my GP and my optician) so what would the personal budget give me other than the extra hassle of me having to count out (real or virtual) pound notes for the chosen provider?

I paid for my blood glucose meter (the NHS pays for the strips). These are usually given free by the manufacturer to diabetics on the Gillette razor blade principle: they make their money from the strips, not the meter. However, in my case I wanted a meter with a large bright display, so I had to buy a suitable on. Similarly with the insulin pen I use. I was prescribed a plastic pen which I found to be cheaply made, so I bought the "deluxe" version (£40). The pen keeps me alive. Would the personal budget pay for these items? If so, what's the downside, what wouldn't I get that I get now. If you say that I won't be restricted, can I remind you of Liam Byrne's note to David Laws?

(I read that medication will not be included in the budget. I am good news for the NHS since I take human insulin and not the three times more expensive analogue insulin. I was prescribed analogues but found they didn't suit me. But how long will it be before medicines are included in personal budgets? Truly personal healthcare would be someone choosing to have the more expensive insulin, but to keep to budget will have to take less of it and compensate by taking more exercise or eating less; or if they want to eat more and exercise less they would have to take more insulin and to keep to the budget they would have to use the cheaper insulin. Personal choice, right?)

#40216 David Rose
Primary carer for my 90 year old mother
n/a

I am the primary carer for my mother, who is 90 years old and unfortunately isn't mobile. We have two carers visiting 4 times a day, but for a number of reasons we are unhappy with the company that provides the carers.

Having raised this issue with Social Services I have been informed that we can change to a different company, but to do this we have to accept a personal budget which will provide the flexibility for us to decide for ourselves.

The fear I have is that, by accepting a personal budget and 'opting-out', we lose the safety net of escalating issues back to Social Services.

I'd like to find out what the other pros & cons are of the personal budget...

Add new comment