How personal health budgets benefit end-of-life patients and their families

In 2016, the UK government made a national commitment to improve end-of-life care across England as it set out a plan to look at ways to ensure care was truly individualised for patients at the end of their lives (Department of Health, 2016).

As a part of this initiative, Birmingham Hospice – formerly John Taylor Hospice – piloted a project to provide patient-centred care, using personal health budgets (PHBs) to be managed by the hospice team as a third-party budget.

A PHB is a budget supplied by the integrated care board (formerly the clinical commissioning group) to the PHB team to use for patients needing extra support at the end of life to keep them supported at home and enable them to remain in their own homes, if that is where they choose to be. The PHB team sources the care the patient needs, and manages the services supplied and all costings associated with it.

Motivation

Health professionals often arrange packages of care as patients approach the end of life, in the hope that the maximum care package of two caregivers four times a day will meet their care needs. The goal of our project was to break this mould and look at how to provide truly individualised care by:

• Getting to know the patients and their families;
• Learning what is important for them, and what exactly they are experiencing.

Supporting patients and their families at this time allows families to spend more quality time with their loved ones.

Aims

Our PHB team had a clear aim to help improve patients’ end-of-life care in a more cost-effective way, by increasing patient satisfaction, as well as enabling families and loved ones to make happy memories that would support their grieving process.

Some of our aims included:

• For all patients in the locality to have equal access to services;
• For care to be truly individualised, with a lesser focus on personal care and a greater focus on what is important to the person;
• To support patients to achieve their desires in terms of preferred place of care and preferred place of death;
• To reduce hospital admissions, where possible, by having access to wider services so crisis situations could be managed at home.

Outcomes

By managing PHBs as a third party, patients, families and the local community learn about what we do and what we can provide. We hear from lots of people who want to give back and, as a result, some of the goods we offer come at no cost to us. We have had large donations of:

• Talking teddy bears for patients to record their voices into for loved ones;
• Bedding, toiletry sets and baby monitors, which we can get straight out to people when needed without using the PHB budget;
• Tickets and experiences from local football clubs;
• Discounts for services from companies.

When the cost of care for patients with a PHB is compared with that of providing a full package of care, it proves to be around a quarter of the cost, or often much less. We find that, when we ask people what is important to them, there are often things that can make a great difference to the individual but they are not of high cost.

We have now supported more than 700 patients through PHBs.

“Innovative, creative, high-impact initiative that truly achieves individual care and is greatly valued by patients and their carers” Judges’ comment

Patient care and service effectiveness

By providing services through the PHB team, patient care is truly individualised. What is important to the patient can be practical support, such as new bedding, help with housework or help to build memories with loved ones.

Data has continued to show an increase in the number of patients who achieve their preferred place of death when receiving support from the PHB team. Our data analysts at the hospice run annual reports on the number of referrals, costs, demographics, and whether the PHB team has prevented hospital admissions or supported patients to achieve their preferred place of death.

Their reports have continually shown the effectiveness and cost effectiveness of the service. As a result, the initial project was extended, and then turned into a standard service that is available for all eligible patients; it has been extended to cover a second local council borough so now covers Solihull as well as Birmingham.

Challenges

We faced a lack of understanding of the PHB third-party budget with patients and families, with a common misconception being that this is a benefit that can be given directly to the patient. We have also had to relay information to referrers that we need to risk assess any goods and services we arrange and we have to be able to justify how the PHB is supporting the patients’ care needs.

We overcame these issues by providing education and continued information to all potential referrers. We have found that, once a team has referred a patient once, they have good insight into the value of the service and will continue to refer more patients. We hope that the service will continue to grow, and we will have an in-house care agency so care can be truly integrated.

Nurse-led service

For the first 12 months, the PHB project was run by a senior nurse, Jan Hipkiss, with Laura Twigge as the administrator. They were working alongside Karen Steadman, a nurse from a local hospital (Heartlands Hospital), and Stephanie Bloxham from Birmingham Voluntary Service Council, who helped provide local services to support the patients.

Once the service had been re-evaluated and then extended, it was recognised that patients being assessed by a palliative specialist nurse was beneficial, so it continued to be run by the senior nurse and nursing sister, Katie McGurk from Birmingham Hospice. To support the expansion, an additional palliative clinical nurse specialist, registered general nurse and administrator were recruited.

We have found that, by being nurse led, we are able to complete a full holistic assessment of the patient’s palliative care needs and work in the multidisciplinary team to ensure all patients’ needs are met, both through support from the PHB team and by accessing available teams and services.

Conclusion

The project was a huge success in reducing costs of care and supporting patients to stay at home, if this was their preferred place of care. It was extended for 12 months, before being integrated into standard practice in 2022.

Initial referrals came from hospice teams but we have visited district nurse teams, presented at conferences, and met with teams from acute trusts and local councils, to spread knowledge of the PHB team and how to refer to the wider community.

The team continues to grow and support an ever-increasing caseload of patients and their families. All the members of the team have a true passion and commitment to our patients and are honoured to be able to support a better end-of-life experience for all.