Mel’s Story

Mel Kershaw was healthcare manager for Oxford Health NHS Foundation Trust’s Fast-Track team to NHS Continuing Healthcare. Mel and her colleagues worked with six clients who were approaching the end of their life, and their families. A personal health budget was used to provide live-in care and relief to care during these client’s last week’s having first established their eligibility for Continuing Healthcare Funding.

Our clients, suffering from diseases such as cancer and lung disease, were already using live-in care packages to support them. We made a clinical judgement based on our experience that only in approximately 10% of all our cases was it appropriate to discuss the option of a personal health budget.

This is because the last few weeks of life can be such an anxious time for families. Many just want us to arrange everything for them, and don’t have the capacity or willingness to take on anything extra including discussing setting up a personal health budget and everything that it involves, such as managing a separate bank account and employing carers directly.

But sometimes we felt it was feasible and appropriate for clients and their families to have a discussion about using a personal health budget to have more choice and control of the care package. For example, one client’s daughter was a lawyer and another ran her own business. They evidently had adequate organisational skills and were used to managing money. In these cases, they opted in for a personal health budget.

For all those client families we considered would be willing to discuss a personal health budget, we introduced the concept during our initial visit to assess eligibility for continuing healthcare.

“Many just want us to arrange everything for them, and don’t have the capacity or willingness to take on anything extra.“

Afterwards, we consulted with our team’s Personal Health Budget Care Navigator. She would then accompany us to speak further with the family, and would talk through details and help devise a support plan which the client’s family would approve. The care plan would also contain a contingency plan, should a person’s healthcare needs change.

Examples of the complex healthcare needs of our clients revolved around them being bed or chair bound. Hence they needed nursing in a hospital-style bed on pressure-reliving mattresses to avoid pressure ulcers.

Carers would need to provide all personal care, manage continence needs such as pads or catheters, provide mouth care, nutritional support and medications. Sometimes oxygen therapy was also in place. It is common for clients to have symptoms of agitation and/or hallucinations so carers needed to be able to provide emotional and psychological support and report changes in condition to professionals.

For our clients on a personal health budget they did have the option of using an independent broker whose job it is to help people with personal health budgets to purchase services and provide expert information, including help on managing finances.

In Oxfordshire we were a pilot site for personal health budgets and have our own Personal Health Budget Care Navigator who did this for our clients.

“I have nothing negative to say about personal health budgets.“

Rather than employ a PA (personal assistant), all our personal health budget clients chose to use one of the agencies approved by Oxfordshire County Council. However, a personal health budget means clients could choose which agency to use. Each agency has its own strengths and weaknesses, as well as differing costs. For example, some agencies have a higher proportion of carers who do not have English as their first language. One of our clients specifically chose an agency which cost more but had more carers with English as their first language.

Overall, personal health budgets worked really well for our clients, and are definitely the way forward as they give clients more power and choice over care, as well as care being more personalised. I have nothing negative to say about personal health budgets.

However, my main tip to professionals working with personal health budgets for the first time is to make sure you understand the whole process before you talk it through with a client, especially end-of-life clients, as you do not want to mislead in any way at such a delicate time. For example, one of our clients was a retired teacher whose care was being provided by a rota of teacher friends. We arranged a meeting to discuss the possibility of using a personal health budget with these informal carers. They had not realised the client would have to employ them and it soon became clear that the teachers did not want to be employed in this way and would have added unnecessary complexity to what was already working well.

So do your homework first. This will avoid you getting into any uncomfortable predicaments.