In the latest of a series of blogs on Personal Health Budgets, NHS England’s Director of Personalisation and Choice explains why the choice agenda is so important for disabled people and those with long term conditions – whether it’s the small everyday lifestyle decisions we make, or the crucial conversations when people are facing the end of their life:

I don’t like lying in at the weekend.

Getting up early most days to tackle a long commute has programmed me to embrace the first signs of daylight.  It is also a calm time of the day, with the children still asleep the daily dramas are yet to begin, and a quiet cup of tea whilst catching up on the news or answering a few emails has almost a serene quality about it.

I recognise that these relatively simple things, these choices I am able to make about my mornings, are not things to take for granted.  Some people might find getting up early at the weekend a strange decision, but regardless of what decision is taken having choice and control in your life is essential for personal wellbeing and general health.  It is however still the case that many disabled people, or people with long term conditions can be robbed of the basic choices that we take for granted.

I still hear too often how people are sometimes left in bed, unable to get up by themselves for perhaps four or even five hours after they wake.  Many people have to endure this period of time wearing incontinence pads, despite not being incontinent.  Many people with long term conditions also suffer from a lack of social inclusion, people can become isolated in their own homes, unable to socialise, exercise, or work, not through lack of ability, simply by the fact that services do not respond to their individual choices for life.

It is partly for these reasons that I struggle to understand the resistance that still exists in relation to person centred care, patient choice and control and the concept of Personal Health Budgets (PHBs).

PHBs can transform people’s lives, enabling the development of a package of care that more effectively responds to them as an individual.

Through receiving a Personal Health Budget an individual is able to:

• Know upfront how much money they have available for healthcare and support.
• Be enabled to choose the health and wellbeing outcomes they want to achieve, in dialogue with one or more healthcare professionals.
• Be involved in the design of their care plan.
• Be able to request a particular model of budget that best suits the amount of choice and control with which they feel comfortable.
• Be able to spend the money in ways and at times that make sense to them, as agreed in their plan.

When implemented well, PHBs improve outcomes and can also save money – everyone wins.

Don’t just take my word for it, check out the many personal stories that demonstrate through the sharing of lived experience the significant changes that PHBs can bring to people’s lives.

But we still have a long way to go to convince people that personalisation and choice should be default approaches within the healthcare system.  I do however, understand the nature of some of the resistance and acknowledge that the challenges faced at a local level can sometimes make the work required to move towards a more person centred service seem overwhelming.

I also recognise that we need to do more to develop compelling arguments over the individual benefits and financial implications – to develop the evidence base for personalisation.  We are working to create a simpler infrastructure to support delivery and reduce bureaucracy to better support professionals in their work in this area.

Some of the resistance simply comes from an over paternalistic response, and a straightforward resistance to change, with people clinging on to a way of working that they have failed to recognise has passed them by.  Healthcare is a social movement, people can be experts in their own conditions, and self- care is becoming a growing trend.  We are at the beginning of a personalisation revolution, the start of the industrialisation of patient empowerment.

So far PHBs have been limited in number, but are now rapidly expanding.  In the past eight months we have seen a 75% increase in the number being delivered and this trend is set to continue.

It’s timely to affirm our commitment to expanding the offer of PHBs to others who could benefit following the publication last week of the Government’s response to the independent review of choice in end of life care.

My team is working with a small number of interested areas to assess the options for personalising services and improving choice and control for individuals at the end of life, using the learning from the delivery of personal health budgets and Integrated Personal Commissioning (IPC) in end of life care.

Enabling dying people to make informed choices about their care couldn’t be more important. Of course most of us find it a difficult subject to discuss, but we can do much better to support people towards a ‘good death’. Last year Jo Fitzgerald wrote a moving account of her son’s death, explaining far better than I could about the importance of good, open conversations, time to make difficult decisions and understanding the options as someone reaches the end of their life.

Additionally, we are developing specific PHB offers over the next few months, beginning to deliver PHBs for people with a learning disability, in mental health services, for wheelchairs, for more people with long term conditions that receive social care support, for children and looked after young people, and for pregnant women to support improve maternity choice.  Our aim is also to make PHBs the default model for delivering NHS Continuing HealthCare where individuals already have the right to have a PHB.

The Personalisation and Choice Group at NHS England is working to improve patient empowerment and expand choice and control through the development of new and innovative ways to deliver services that are more person centred – to enable people to live the life they want to – even if this means getting up at 5am on Sunday!

We have a long way to go with the agenda, but we are seizing the opportunity to embrace the growing enthusiasm across many areas of the system, that comes from a realisation of the opportunities that empowerment unleashes.