Feature / LATEST: The direct approach: the ultimate in personal health budgets

Graduate financial management trainee Lucy Jones, on secondment to the Department of Health, explains why she is convinced giving patients budgets is the best way to put them in control of the services they receive.

Putting people more in control of their healthcare can transform their care experience and outcomes for the better.  This became clear to me in the first week of my secondment to the personal health budget team at the Department of Health, when several carers explained to me what a difference personal health budgets had made for them and the people they care for.

Then, on 28 June, the care services minister announced that some primary care trusts would gain the power to offer patients direct payments for healthcare. This allows PCTs piloting personal health budgets to provide money for individuals to spend on their own care.  They will give patients direct control, as buyers of their services, meaning they can decide how, where and from whom they receive their healthcare.

This will maximise freedom of choice, empowering patients to take responsibility for their own care and motivating them to take time to understand their condition and the options for their healthcare. It should also enable patients to become partners with clinicians and other professionals in their healthcare.

Direct payments are a radical way of delivering NHS services. They are being piloted as part of a wider Department pilot looking at personal health budgets, involving around half of the PCTs in England.  Personal health budgets can also be held by an independent third party, such as a user trust or voluntary organisation.  They can also be held by a commissioning NHS body on behalf of such a budget holder.

Direct payments will be suitable for people who are willing and able to manage them. People can also mix and match to create a package that is suitable for them. Whoever holds a budget, the aim is to help people to get desired outcomes, in ways that are most suitable to them. 

Different PCTs are piloting budgets for different conditions, including diabetes, stroke, and heart disease, end of life care, many mental health conditions and learning disabilities.  Personal health budgets can also promote the integration of heath and social care at the level of the individual and partnerships between professionals and the individual, both of which are strategies that underpin a more patient-centred NHS.

All personal health budgets require a care plan agreed by the patient or their representative and an authorising health professional. The plan sets out relevant health needs, desired outcomes, the budget available and the goods and services that will be purchased.  The recipient manages the care, but can refer to health professionals if and when they need to.

Core GP services and emergency care cannot be charged to a personal budget, nor can services inappropriate for the state to provide, such as alcohol, tobacco, gambling, debt repayment or illegal items. NHS care is still available in the normal way for other conditions including new complications not yet budgeted for. No one will ever be denied the care they need.

Direct payments may be paid into a bank account, for instance monthly, or as a lump sum for a major purchase. Or people can be given pre-paid cards.  The care plan will be monitored and reviewed on a regular basis by a care coordinator to ensure the individual's needs are being met and the budget is being spent as agreed in the plan. 

The budget comes from existing PCT funding. Detailed mechanics of budget setting, payment and review including handling of under- or overspend are up to the PCT involved.  For example, a variety of needs-based or outcome-based approaches to budget setting are being tried, while a few PCTs are basing budgets on current cost, for instance using details of the costs of recent provision. Most of this is still in early stages.

Personal health budgets are not appropriate for all conditions or services and not everyone will want one.  Nevertheless, they can make a big difference to many people with long-term needs. ‘Debbie and Brian's story’ is a striking example.  Brian suffered a series of strokes that led to dementia. He went to live with his daughter, Debbie (who was recovering from cancer) and her two sons.  By September 2009 Brian's dementia was becoming terminal and he needed 24-7 care.  He was given a traditional care package by the PCT. 

Debbie had no control over who came into her home, or when, to give Brian care.  She found it increasingly difficult to balance caring for her father, her children and working part-time.  NHS Doncaster offered Debbie a personal health budget for Brian's care. Although this ran only for two and a half months before Brian died, Debbie says that it helped to transform their lives beyond recognition. 

She was happy with the quality of the care Brian had been receiving and wanted to keep the same carers.  She was able to arrange for care and respite when she needed it to go out to work or to spend time with her sons.  This enabled Brian to stay at home instead of moving to a nursing home.

Debbie felt she was a valued participant in organising Brian's care; she felt in control instead of care being something ‘done to us’. She was able to choose a care agency and to ‘bank’ care hours to use when required.  This reduced the number of emergency calls and the need to find alternative support at short notice.

The personal health budget pilots draw upon cooperation between users, providers, clinicians, third sector organisations, commissioners and the Department. This leads to partners at all levels of the system working together to test their ideas and share learning, promoting a bottom up approach to innovation.  Enthusiastic engagement by all involved is crucial and is developing gradually.  It is key to the pilots' success.

Some fears and concerns have been expressed over personal health budgets, for example in a 2009 NHS confederation report.  There are indeed potential risks, for example of budget misuse and of undue administrative and transaction costs.  However, good governance of care plan development, authorisation, monitoring and review should limit these risks. 

Personal budgets may even decrease some risks such as the risk of patients hoarding, wasting or passing on medicines.  Self-directed healthcare is in any case the norm in many countries where people lack state funded healthcare, and most people can manage their own routine healthcare responsibly.

The current ‘any willing provider’ policy means that patient choice of provider should by unrestricted.  However, services that are regulated will remain so. Some providers fear competition when patients can choose to go elsewhere.  However, evidence from social care direct payments shows that most people did not leave their providers.  What changed more was the delivery of care, as people gained flexibility over when and how they received it.

In any case, if a patient chooses to switch providers, it’s probably because they can get better care elsewhere.  NHS professionals can be reassured that personal health budgets will not inhibit clinician's proper say in the care of patients.  They should however enable ongoing changes in attitudes across the NHS from one of patients passively treated by experts to one of true partnership between clinicians, providers, commissioners and patients treated as equal and as responsible people.  Proper balance is needed between safeguarding and giving people control.

A key aim is to achieve better outcomes and better patient experience by doing things differently with the same resources.  There is also potential for cost savings from efficiency gains.  Evidence from Holland and America shows that personal health budgets, including direct payments can improve both the quality and economy of care.  Importantly, no patient need have a personal health budget if they do not want it or it is felt that they are not likely to benefit from it.

As yet, we have only fragmentary information about individual pilot studies, we don’t know yet what the proportion of the NHS budget may eventually be involved.  The changes involved will, however, be far reaching and will need time to evolve.  Existing providers will need to change both systems and attitudes to facilitate partnership with patients and individual budget holders. 

The healthcare provider market needs transformation to offer more user options. This may mean new types of contracts and attracting new entrants to the market to enable alternative providers such as charities and social enterprises.  There is also a need to improve integration of health and social care to facilitate seamless service for people who need both.

We in the NHS should give personal health budget pilots genuine support as we stand to gain much from working in partnership with patients.  While personal health budgets are new and scepticism and reluctance are understandable, we will not know how to make them work unless we try. Our role is to ensure patients get high quality care and achieve better healthcare outcomes.  What better way to do this than give care better tailored to individual needs? 

Lucy Jones is an NHS graduate financial management trainee on secondment to the Department of Health as a policy manager for personal health budgets.

More details about personal health budget pilots at www.personalhealthbudgets.org.uk

NHS Confederation report is available at: www.nhsconfed.org/Publications/reports/Pages/Personalhealthbudgets.aspx