In response to the publication of a report by Quality Health into people’s experiences of Personal Health Budgets, the Lived Experience Lead for Personalised Care outlines how NHS England can learn from it:

It is ten years since my son, Mitchell, became one of the first people to have a personal health budget.

Not only did it have a positive impact on his life, it also enabled him to have a good death in 2015.

For a decade I’ve been passionate about personalised care and have been working to help ensure that Mitchell’s legacy lives on and that many more people experience the difference a personal health budget can make. However, I’m also realistic about the scale of the challenge, which requires a fundamental shift in the relationship between the NHS and the people it serves.

Personal health budgets mean sharing power, information, knowledge and decision-making.

They also rely on good personalised care and support planning, giving people the opportunity to reflect on what outcomes they want to achieve in partnership with a health professional and what support they need to manage their personal health budget. This sometimes means recruiting and managing personal assistants.

The Personalised Care Group has a Lived Experience team, which I’m privileged to lead. In the team, we all have experience of personal health budgets or personal budgets within our immediate family. We’re working nationally, regionally and locally to help ensure that personal health budgets work well for people.

As part of this work, we decided to develop a personal health budget and integrated personal budget survey. We wanted to hear people’s perceptions of the quality of their local personal health budget and integrated personal budget offer and then use this intelligence to help shape national and local improvement activity.

We agreed on some key design criteria:

• the survey had to be commissioned and run independently of NHS England;
• it had to be co-produced with people with lived experience so we heard what people wanted to tell us rather than what NHS England wanted to know, and;
• it had to be promoted directly to budget holders independent of their Clinical Commissioning Groups (CCGs) so that people felt confident to share their experiences.

A total of 390 people responded to the survey. The results told us that, once people had a personal health budget or integrated personal budget, 86% said that they achieved what they wanted as a result of their plan to some extent or completely. That’s great news. Personal health budgets are making a difference to people’s lives.

However, we also know that the process of getting one could be improved. It’s not easy to find information and 60% of people said the overall time taken between starting the process of getting a personal health budget or integrated personal budget, and having the budget up and running, was too slow.

NHS England is committed to ensuring that more people can benefit from a personal health budget but, as the survey clearly shows, quality matters. That is why NHS England is developing quality indicators for personal health budgets and will continue to commission an annual personal health survey.

CCGs are receiving proactive delivery support and, as a direct result of the survey, quality improvement workshops will be offered on personal health budgets for people in receipt of continuing healthcare funding. These will be co-delivered by people with lived experience. Work is also underway to explore the challenge highlighted in the survey around recruiting and managing personal assistants. These are just a few examples of the quality improvement actions that have been identified through the survey and that will be published later in the year.

These are key to the success of personal health budgets because we know that, done well, they can be hugely transformative. As one respondent said, “I feel lucky to have it; it’s changed my life”