In April it was announced that thousands more patients could qualify for their own personalised NHS budget. Adults who are eligible for continuing healthcare (CHC) funding and children who receive continuing care have had a legal right to a personal health budget (PHB) since 2014. The aim of PHBs is to give individuals more choice and control over the money spent on their health and wellbeing needs. By 2020, NHS England expects an uptake of at least 100,000 people.

Uptake has been slow due to a lack of awareness about PHBs amongst patients and families, as well as amongst care professionals. The system to apply for a PHB is also difficult to navigate. Currently only people with a high level of complexity qualify for a PHB.

A service user seeking a PHB is given a social care assessment with the help of a care manager.  A support plan and budget is calculated based on the information given by the service user. It is means tested. Service users may choose to have their PHB paid directly to them, or managed by the NHS (notional budget) or a third party.

Recently, Shared Lives Plus, a UK network which matches people who want extra support at home with people who have a spare room and are able to help provide care, were commissioned by NHS England to publish a guide to PHBs for the voluntary, community, and social enterprise (VCSE) sector. It states that the VCSE sector could and should play a big part in helping people to access and use PHBs, as well as providing and brokering new kinds of support. It claims that VCSEs have “a track record of reaching local groups or communities” which “NHS organisations have struggled to reach consistently.” The guide gives recommendations for VCSEs to work with service users and to coordinate with CCGs and the NHS, and illustrates this with some inspirational case studies.

However, the ideas it promotes raise questions about the training needs of volunteers. From the public’s point of view, voluntary services are being exploited to plug the gaps in statutory care services, often without NHS funding. Certainly, there is a discrepancy between increasing expectations on the voluntary sector and decreasing funding.

Evidence presented by the National Audit Office (NAO) in 2016 suggested that PHBs were not working. There was, and continues to be, insufficient funding, set against increasing service users’ needs. This is a familiar story. This year, Disability United, an online support network for the disabled community, found at least 37 CCG’s putting restrictions on CHC funding, limiting people’s right to receive care at home. This is happening against a background of NHS England seeking £855 million of efficiency savings in CHC and NHS-funded nursing care spending by 2020-21. The current system needs to be replaced and the PHB funding gap needs to be acknowledged and corrected.

At a time when the government is seeking efficiency savings, increased funding looks unlikely. The Public Accounts Committee of the House of Commons has made recommendations to the Department of Health and NHS England which address the shortcomings of CHC. They will report back to the Committee by April 2018. While NHS England’s vision for PHBs focuses on the mechanics of delivery, together with developing effective digital systems, the patient’s voice needs to be heard above all, especially the voices of those who have received PHB’s in the last four years. Peoplehub, a PHB network affiliated to NHS England, takes a step in the right direction. Think Local Act Personal (TLAP), a national partnership transforming health and care through personalisation and community-based support, have written a report “Gathering the Evidence: Making PHBs Work for All” which reinforces this prime need. TLAP have also written a guidance, “Beyond Direct Payments,” which offers alternative options to direct payments. Is it not the case that the system should be fitted to the patient’s needs and aspirations, not vice versa?  Then, PHBs will live up to their name of being “personalised.”

Jenny Wigram serves on the BMA’s Patient Liaison Group and the Community Care Committee.

Competing interests: None declared.