Is 'person-centred care' being muddled with individual consumerism - and why so little debate between the parties on the latest fundamental shift in our NHS?
During the parliamentary recess, the government quietly slipped through legislation that will allow a new system of paying for healthcare - personal health budgets - to be extended across the NHS.
Such a policy has profound implications - so why has the move gone unnoticed?
Perhaps because over the years, this policy has benefited from a cross-party consensus. Just this month Liberal Democrat Care minister Norman Lamb said he would like to see mental health patients being given personal budgets to pay for care.
What are personal budgets?
A “personal health budget” is NHS money allocated to someone with an identified health need. In theory it enables him or her to have greater control when planning for and meeting chosen outcomes. The person knows how much money they have, so they can use that information to plan and to budget in an ongoing way.
Personal budgets can work in three ways, or a combination of them: a notional budget attached to a patient, a real budget held by a third party, or direct payment for healthcare. Personal budgets were first introduced for social care in 1997. Local councils gave users a means-tested sum of money to spend on care of their choice, as an alternative to existing social care packages.
Personal Health Budgets were first proposed in the June 2008 “High Quality Care For All” report by Labour Peer Lord Darzi, who suggested:
“Personal health budgets are likely to work for patients with fairly stable and predictable conditions, well placed to make informed choices about their treatment; for example, some of those in receipt of continuing care or with long-term conditions.”
Do they work?
A national pilot programme was launched a year later and ran until 2012, focusing on “NHS continuing healthcare”- patients with mental health issues, stroke survivors, those suffering from long-term neurological conditions, diabetics, and those with chronic obstructive pulmonary disease.
There has been a consistent concern about the validity of extrapolating from the results from the pilots to “the real thing”.
The interim review noted that “The three month interviews reported here were conducted early in the implementation of the pilots, with some of the first patients to be offered personal health budgets. These patients may not be wholly representative of those subsequently recruited to the pilots. Some of their experiences may also be atypical, because the pilot sites were not fully operational at that stage and were still working out how to implement personal health budgets.” (Jones et al., 2011).
In the subsequent review it was reported that holders had a “significant improvement” in subjective wellbeing and happiness compared with those getting conventional care (Forder et al., 2012). Whilst the results were statistically not that consistent, it seemed that those whose budget was over £1000 a year were even more satisfied.
However the Nuffield Trust noted last month, "To date, the numbers of personal health budgets implemented in each local area has barely exceeded 100 people" and the amount of money and types of services commissioned varied wildly between areas with some in receipt of £500 and others in receipt of £15,000 and responsible for a much broader area of their own healthcare.
The pilots did appear to identify the things that patients with long-term conditions might wish to spend their budgets on, if they had the freedom to do so. They included not only conventional treatments but also alternative ones, some of which, such as reiki, reflexology, and aromatherapy, are not currently supported by robust scientific evidence.
Although some including the NHS Confederation (2011) have welcomed PHBs, many questions still remain. How will the total amount of the budget be determined? And what will happen when the budgets are spent? Given the only certainties in life are indeed death and taxes, it’s not possible to guarantee that a person with even the most stable management of a chronic condition will escape an acute hospital admission. Once discharged the patients care needs will invariably change, thus throwing off course all budgeting.
As a “budget holder” allocating my budget, I could now become responsible for hundreds or thousands of pounds for my care. If my purchases do not provide the outcomes that are needed (for example, I end up in A&E or the Medical Admissions Unit more frequently than before) then the “fault” is mine because I clearly bought the wrong services. Personal Health Budgets are a way of making NHS patients responsible for their care. Responsibility has become “fault”, and I have become “irresponsible”.
Could it be that Personal Health Budgets are simply the start of the process whereby at some point in the future each of us will be allocated a fixed amount to purchase insurance, with the requirement to top up anything that is not covered. Personalisation may currently seem like ‘a good idea’, but could also usefully become a Trojan horse for privatisation in the future (McKee, 2013).
The potential costs are considerable, too. Jones and colleagues (Jones et al., 2011) reported that:
“After discounting costs that would have been incurred without personal health budgets and the resource associated with the pilot process (for example advertising the piloting of the personal health budget process) it was found that an overall average cost of £93,280 (median £81,680) within the first year would be required to implement the initiative.”
The Dutch experience with Personal Health Budgets is salutary (van Ginneken, Groenewegen, and McKee, 2012). McKee (2013) clarified later that the key message was that
“that their availability is being scaled back radically because of escalating costs and widespread abuse.”
Do they reflect the sort of world we all want to live in?
Of course, approaches which promote autonomy are to be welcomed. It is, however, vital not to confuse personalisation with market individualism, with all of us pulling in different directions, but in some cases pulling towards increased surplus or profit.
Shared decision-making is a goal of the care professions too, where the clinician will explore the beliefs, concerns and expectations of the person or patient. All parties may indeed welcome personalisation, but may feel somewhat uncomfortable about an individualist consumer-led approach to healthcare. In conditions such as ‘stable’ diabetes, this shopping list can be from diverse ‘providers’ ranging from podiatry to food suppliers, leaving the ‘end user’ confused and fragmented. Whilst choice and control are to be welcomed, do we want a patient’s experience of the NHS to resemble closely that of interaction with a price comparison website?
The problem is that patients will have to be persuaded to purchase the most effective treatments - particularly as budgets tighten, and we move towards a greater focus on measuring outcomes. In social care, there have been problems with users purchasing "the right" services with their personal budgets. In health, these concerns are wider.
The Royal College of Nursing raised concerns as far back as 2009 that this shift in funding systems could be used as an opportunity to make cuts in community nursing. Earlier this month the Nuffield Trust suggested personal budgets would lead to some NHS services needing to be scrapped and could actually reduce choice.
Individuals with full capacity and full information have a good shot of making good decisions, but possibly the biggest fallacy of the market-driven ‘choice’ argument are the profound information asymmetries between provider and ‘consumer’ (the artist previously known as ‘patient’).
The criticisms against PHBs have remarkable similarities to those against the economist Richard Thaler and legal scholar Cass Sunstein regarding their influential work on "nudging" people into making wiser “choices”. Individuals without appropriate guidance are, still, liable to make very bad decisions. In an article entitled “Benevolent meddling won’t help us make good decisions”, Henry Farrell and Cosma Shalizi (2011) argued:
“We have all cringed watching friends and family make terrible decisions, and been tempted by visions of the pain spared if we could only make them follow our advice. The same feeling motivates well-intentioned technocrats to take charge of the public: people are plainly making sad blunders they will regret.”
This idea of decisions being ‘nudged’ is not without its critics. Many deride it as manipulative and paternalistic. Cornell University political scientist Suzanne Mettler, author of the 2011 book “The Submerged State: How Invisible Government Policies Undermine American Democracy”, argues that governmental nudge policies treat citizens as consumers who need choices arranged for them, which clashes with many tenets of democracy. In the most cynical formulation, persons don’t know why they’re making certain decisions, having been bombarded by much miscellaneous information about possible therapies.
The apparent political consensus about personal health budgets is remarkable. Presumably these political parties have different attitudes about what sort of society they wish to live in?
Department of Health (2008) High Quality Care For All – NHS Next Stage Review Final Report http://www.official-documents.gov.uk/document/cm74/7432/7432.pdf
Farrell, H, Shalizi (2011) Nudge No More. Benevolent meddling won’t help us make good decisions. http://www.slate.com/articles/health_and_science/new_scientist/2011/11/does_nudge_policy_work_a_critique_of_sunstein_and_thaler_.html
Forder J, Jones K, Glendinning C, Caiels J, Welch E, Baxter K, et al. (2012) Evaluation of the personal health budget pilot programme. http://www.personalhealthbudgets.dh.gov.uk/_library/Resources/Personalhealthbudgets/2012/PHBE_personal_health_budgets_final_report_Nov_2012.pdf
Irvine, A, Davidson, J, Glendinning, C, Jones, K, Forder, J, Caiels, J, Welch, E, Windle, K, Dolan, P, King, D. (2011) Personal health budgets: Early experiences of budget holders Fourth Interim Report. http://www.york.ac.uk/inst/spru/research/pdf/PHBE4int.pdf
Jones K, Forder J, Caiels J, Welch E, Windle K, Davidson J, et al. (2011) The cost of implementing personal health budgets. Third interim report. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215532/dh_128368.pdf
Mettler, S. (2011) The submerged state: how invisible government policies undermine American democracy. Chicago, USA: University of Chicago Press
McKee, M. (2013) Two key messages were overlooked in article on personal health budgets, Jan 8;346:f34.
NHS Confederation (2011) Personal health budgets: countdown to roll-out. NHS Confederation. http://www.nhsconfed.org/Publications/briefings/Pages/Personal-health-budgets.aspx
van Ginneken E, Groenewegen PP, McKee M. (2012) Personal healthcare budgets: what can England learn from the Netherlands? BMJ, Mar 6, 344, e1383. doi: 10.1136/bmj.e1383.