Jo Fitzgerald (left), Zoe Porter, and Martin Cattermole explain how personal health budgets will offer people more choices and tailored solutions to meet their needs
After a successful pilot programme, personal health budgets will be introduced to the NHS across England in April 2014, beginning with NHS Continuing Healthcare. 1-3 This article explains the benefits of personal health budgets and sums up learning from the pilot programme.
What is a personal health budget?
The Department of Health has defined a personal health budget as: ‘… an amount of money to support a person’s identified health and wellbeing needs, planned and agreed between the person and their local NHS team.’1 The aim is to enable people with long-term conditions and disabilities to have greater choice, flexibility, and control over the healthcare and support they receive.1
The stages of the personal health budgets process are shown in Figure 1. A personal health budget is based on a personalised care plan that is worked out and agreed between the person and the NHS. It can be used in one of three ways (see Figure 2):
- a notional budget
- a third-party budget
- a direct payment.
Why are personal health budgets being introduced?
Long-term conditions, such as diabetes, arthritis, chronic obstructive pulmonary disease (COPD), and mental health problems, account for the majority of NHS spending. With an aging population, the cost of long-term conditions to the NHS is expected to rise.1 Personal health budgets are one aspect of a drive to increase choice and control for patients in the NHS, and are closely linked to other initiatives that support people to manage a long-term health condition: for example, shared decision-making, and the recovery approach in mental health.1
Although personal health budgets are now Government policy, they are not primarily a top-down change. They evolved out of a UK campaign by disabled people, which led to the introduction of direct payments for social care in the 1990s.4 Personal health budgets were originally launched as a response to problems experienced by disabled people receiving direct payments, who were not able to continue to control their support when their needs increased and their care became funded by the NHS.
What does the NHS need to do?
In November 2012, following a 3-year pilot programme, the Government announced that personal health budgets would be introduced across England. Over 60 primary care trusts (as they were then) in England took part in the pilot. In 20 full pilot sites, 1141 people with a personal health budget took part in the evaluation.5 The NHS Mandate states that in future ‘... people who could benefit will have the option to hold their own personal health budget, as a way to have even more control over their care’.6
In the pilot, 45% of people with a personal health budget opted to receive this as a direct payment, where money is paid directly into the bank account of the person or their representative.5 Only sites approved by the Department of Health were able to make direct payments. Since August 2013, the NHS in England can offer a direct payment to anyone (within certain restrictions set out in regulations).7
By April 2014, people eligible for NHS Continuing Healthcare will have the right to ask for a personal health budget. If an adult lacks capacity, a parent or other representative can receive the budget on their behalf. Parents of children receiving continuing care will also have the right to ask for a personal health budget.8
Evaluation of the pilot programme
The evaluation of the pilot programme showed that a wide range of people could benefit from personal health budgets, and recommended that these should be offered to all the groups included in the pilot. These groups included people with a range of long-term health conditions, for example:
- chronic obstructive pulmonary disease
- neurological problems
- mental health needs
- people receiving NHS Continuing Healthcare because of a severe health condition.
Better results were obtained when people:5
- knew the money that was likely to be allowed for their budget at an early stage
- had access to advice and support
- were given choice and flexibility over how to use the budget
- could choose how the budget was managed.
In contrast, personal health budgets tended to worsen people’s outcomes at pilot sites that imposed a lot of restrictions, or did not offer the option of a direct payment.5
The evaluation also showed how personal health budgets could support integration between healthcare and social care.5 Work by the pilot sites has explored how this integration can work in practice.9,10
Overall, personal health budgets were found to be cost-neutral. For some people with higher needs, direct cost savings were achieved. This was partly as a result of people choosing to meet their health needs in different ways that cost less; for example, by employing personal assistants rather than arranging care through an agency. Spending on hospital care also fell for people with a personal health budget.5
National personal budget survey
Following the evaluation, a number of sites took part in the annual National Personal Budget Survey carried out by ‘In Control’ and Lancaster University on behalf of the ‘Think Local, Act Personal’ partnership.11 Overall, the findings suggest that at this early stage, and on a small scale, early adopter sites are achieving good results. The survey supports the main message of the pilot evaluation—that for successful outcomes, the NHS will need to embrace the spirit of personal health budgets and offer choice, control, and flexibility over how budgets are used.
Learning from the pilot—the personal health budgets toolkit12
Personal health budgets require a radical change in thinking and practice on the part of both commissioners and providers. The challenges include:
- attitudes to risk13
- willingness to allow people to use their budget in new ways14
- how to calculate a person’s budget 15
- the need for money to move around the system16
The authors’ advice is to start small and learn as you go. Do not spend lots of time trying to get everything right before you begin to offer personal health budgets—culture change is as important as new systems.
To capture the learning during the pilot programme, the Department of Health worked with the pilot sites to identify challenges to implementing personal health budgets, and to help develop solutions. In the rest of this article, we summarise some of the main learning points of the pilot programme and offer sources of further information. The personal health budgets toolkit includes practical guides and stories which give more detail on how personal health budgets can be implemented.12
The pilot sites learned that it is important to encourage people taking up personal health budgets and their families to relate their stories (see Box 1). Stories help other people to develop their own plan and are effective in getting NHS staff and managers on board. The stories powerfully illustrate what was working and not working for people in the services they used previously, and the difference made by being able to control the budget.17
Under the Equality Act 2010,18 the NHS has a legal obligation to eliminate discrimination and advance equality of opportunity for specific groups with protected characteristics (i.e. age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex and sexual orientation).19 Personal health budgets have the potential to help the NHS tailor individual needs, with the creation of support arrangements that reflect each person’s background, preferences, and specific needs.
Concern is sometimes raised that personal health budgets will mainly benefit the more affluent and well informed. The evaluation did not report any differences in outcomes on the basis of gender, ethnicity, or income.5
For people using health services in England, the introduction of personal health budgets represents a major step forward in being able to make genuine choices. This change involves a fundamental shift in thinking and practice. Instead of being passive recipients of NHS services, people become equal partners in maintaining their own health and wellbeing.
Peer networks are an example of how this new relationship can work.20 Peer networks are independent groups made up of people who are taking up personal health budgets and family members, sometimes with a facilitator. People in the group work together with NHS managers and staff to agree policies and plans for delivering personal health budgets. The national peer network was launched in spring 2011. Since then, several local peer networks have been started, which provide peer support and help the effective implementation of personal health budgets locally. A peer network creates an opportunity to hear directly from people about how things are going and to discuss with them what might change or be improved.
Box 1: Personal health budgets stories17
Louise and her mother Mary live in West Sussex
My mother has Alzheimer’s disease, which was diagnosed 15 years ago. Before having a personal health budget, my mother required frequent stays in residential homes. Now she lives with my husband and me, as she wanted to spend her final months at home, rather than in a nursing home. The personal health budget has enabled us to pay for a team of seven personal assistants who provide excellent and consistent care. Since my mother has been given the personal health budget, we have never looked back. My mother has not required any emergency admissions to a nursing home or the hospital, avoiding traumatic upheavals for her. She is so much happier.
Holly, manager for NHS Continuing Healthcare, Oxford Health NHS Foundation Trust
The problem with traditional care packages has been that people have had no choice but to use agency staff. Often people found they just did not know which carer would be turning up next at their door. The positive health impact of personal health budgets has been huge. People have been admitted to hospital less. This is because personal assistants get to know the person so much better, and so can pre-empt problems. Plus, people feel more in control of their lives, and so feel safer and more confident. Our working practices have changed. We can have honest, upfront conversations with people about the cost of care. We have also become open to being inventive.
The NHS is going through a period of unprecedented financial pressure, and managers will be understandably concerned to ensure that personal health budgets do not increase costs. A key part of the process is that the person receiving the budget should be informed of a rough, indicative budget at an early stage. The final budget is based on a detailed care plan, which sets out how the money will be used.
Experience from the implementation of personal budgets in social care has highlighted the risk of imposing unnecessary restrictions and time-consuming processes when working out the amount of a personal budget.21
When setting budgets, a sensible starting point is that a personal health budget should match the amount of money that the NHS would normally have spent on arranging services. Providing the final budget is within this amount, there is no reason why plans cannot be agreed by a simple process (e.g. with a clinician and a manager, rather than a series of panels).
During the pilot, sites developed local tools to help set an indicative budget. These proved adequate for implementation in NHS Continuing Healthcare, where numbers are likely to be small. More information on setting budgets22 and other financial aspects are available in the personal health budgets toolkit.12
A personal health budget can cover a very wide range of needs although certain health services (e.g. medication and emergency care) are excluded.7 In NHS Continuing Healthcare, the NHS is required to meet both healthcare and social care needs.23 Care plans should take a ‘whole life, whole family’ approach rather than just focusing on healthcare tasks. This means that people will legitimately use their budgets in very different ways compared with conventional NHS services.
People only qualify for a personal health budget because they have a high level of need. It is important to make sure that concerns about ‘fairness’ do not prevent people from finding better ways to manage their health. For example, people have used their personal health budget to buy gym memberships instead of physiotherapy, and gone on holiday with their family instead of having respite in a care home. The evaluation showed better outcomes could be achieved for the same cost as conventional services and ‘personal health budgets models with high degrees of flexibility and choice showed especially strong effects.’5
In order to introduce personal health budgets successfully, organisations will need to take a new approach to managing risks. This will mean challenging the risk-averse culture that prevails in some parts of the NHS, and accepting that:
- health needs can be better managed if clinical tasks are carried out by personal assistants or family members, after suitable training24
- in order to lead a full life, people need to be able to do things that some professionals regard as risky13
- people who lack mental capacity can have a personal health budget, provided that suitable arrangements are in place19
- direct payments work well, providing suitable support services and proportionate monitoring are in place.25
Personal health budgets are fully aligned with the principles of the Mental Capacity Act 200526 and national guidance on safeguarding.27 The process (see Figure 1) includes checks and balances at each stage. The toolkit12 includes guides on how to manage the issues most likely to arise.13 Managing risk in a positive way should be seen as normal business, and is part of the shift towards an equal relationship between people who use the NHS and professionals.
An important part of the personal health budget process is monitoring and review (see Figure 1). Normally reviews are held within 3 months of the budget being in place, and then at least once per year. This is a chance to look at whether the care plan is working for the person and their family, and whether the amount of the budget is right. Budgets can be adjusted up or down if needed. The review is also a chance to check that risks are being effectively managed and to identify any safeguarding concerns.
Personal health budgets are here to stay. Every clinical commissioning group will need to be able to offer personal health budgets by April 2014, initially in NHS Continuing Healthcare. NHS England has made available the learning from the pilot sites to support implementation and prepare the way for a wider roll-out.
- Personal health budgets guide: co-production—changing the relationship between people and practitioners. DH, 2013. Available at: www.personalhealthbudgets.england.nhs.uk/_library/Resources/Personalhealthbudgets/
- Personal health budgets toolkit: learning from the pilot programme. DH, 2012. Available at: www.personalhealthbudgets.england.nhs.uk/_library/Resources/Personalhealthbudgets/
- How to get good results: key learning from the evaluation. DH, 2012. Available at: www.personalhealthbudgets.england.nhs.uk/_library/Resources/Personalhealthbudgets/
- Guidance on direct payments for community care, services for carers and children’s services: England 2009. DH, 2009. Available at: webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/Publicationsandstatistics/Publications/
Publicationspolicyandguidance/DH_104840 (accessed 3 October 2013).
- Forder J, Jones K, Glendinning C et al. Evaluation of the personal health budget pilot programme. Personal Social Services Research Unit, University of Kent for the Department of Health. Available at: www.phbe.org.uk/about_the_evaluation.php
- Department of Health website. The mandate: a mandate from the government to the NHS commissioning board: April 2013 to March 2015. DH, 2012. Available at: www.gov.uk/government/publications/the-nhs-mandate (accessed 4 September 2013).
- The National Health Service (Direct Payments) Regulations 2013. www.legislation.gov.uk/uksi/2013/1617/part/4/made (accessed 4 September 2013).
- NHS Choices website. Personal health budgets. www.nhs.uk/personalhealthbudgets
- Personal health budgets guide: integrating personal budgets—early learning. DH, 2012. Available at:www.personalhealthbudgets.england.nhs.uk/Topics/Toolkit/MakingPHBshappen/ (accessed 4 September 2013)
- Personal health budgets guide: integrating personal budgets—myths and misconceptions. DH, 2012. Available at: www.personalhealthbudgets.england.nhs.uk/Topics/Toolkit/MakingPHBshappen/Integrating/ (accessed 4 September 2013).
- Think Local, Act Personal website. The POET (Personalisation Outcome Evaluation Tool) surveys for personal budget holders and for carers. 2nd National Personal Budget Survey 2013. Documents available at: www.thinklocalactpersonal.org.uk/Latest/Resource/?cid=9503 (accessed 4 September).
- NHS England personal health budgets website. Personal health budgets toolkit. Available at: www.personalhealthbudgets.england.nhs.uk/Topics/Toolkit/ (accessed 5 September 2013).
- Personal health budgets guide: choice, risk and decision making. DH, 2012. Available at: www.personalhealthbudgets.england.nhs.uk/_library/Resources/Personalhealthbudgets/Toolkit/
- Personal health budgets guide: implementing effective care planning. DH, 2012. Available at: www.personalhealthbudgets.england.nhs.uk/_library/Resources/Personalhealthbudgets/Toolkit/
- Personal health budgets guide: how to set budgets—early learning. DH, 2012. Available at: www.personalhealthbudgets.england.nhs.uk/_library/Resources/Personalhealthbudgets/Toolkit/
- Making personal health budgets sustainable. Audit Commission, 2012. Available at: www.personalhealthbudgets.england.nhs.uk/_library/Resources/Personalhealthbudgets/Toolkit/
- NHS England personal health budgets website. Personal health budgets. Hearing real stories. www.personalhealthbudgets.england.nhs.uk/Topics/Toolkit/HowPHBswork/Stories/ (accessed 5 September 2013).
- Equality Act 2010. Available at: www.legislation.gov.uk/ukpga/2010/15/contents (accessed 5 September 2013).
- NHS England personal health budgets website. Personal health budgets delivery team. Personal health budgets guide: ensuring equal access. DH, 2013. Available at: www.personalhealthbudgets.england.nhs.uk/_library/Resources/Personalhealthbudgets/Toolkit/
- Personal health budgets guide: developing a local peer network. DH, 2013. Available at: www.personalhealthbudgets.england.nhs.uk/_library/Resources/Personalhealthbudgets/Toolkit/
- Self-directed support: reducing process, increasing choice and control. Think Local, Act Personal, 2013. Available at: www.thinklocalactpersonal.org.uk/_library/TLAPReducingProcess_FINAL.pdf
- Personal health budgets guide: budget setting for NHS Continuing Healthcare. DH, 2012. Available at: www.personalhealthbudgets.england.nhs.uk/_library/Resources/Personalhealthbudgets/Toolkit/
- National framework for NHS Continuing Healthcare and NHS funded nursing care. Department of Health, 2012. Available at: www.gov.uk/government/publications/national-framework-for-nhs-continuing-healthcare-and-nhs-funded-nursing-care (accessed 4 October 2013).
- Personal health budgets guide: Personal assistants—delegation, training and accountability. DH, 2012. Available at: www.personalhealthbudgets.england.nhs.uk/_library/Resources/Personalhealthbudgets/Toolkit/
- Healthcare Financial Management Association. Practical guide: direct payments for healthcare. HFMA, 2012.
- Mental Capacity Act 2005. Available at: www.legislation.gov.uk/ukpga/2005/9/contents (accessed 5 September 2013).
- Department of Health. Safeguarding adults: the role of health service practitioners. DH, 2011. Available at: www.gov.uk/government/uploads/system/uploads/attachment_data/file/215714/dh_125233.pdfG