Dad James Jeynes tells of his fight to get a Personal Health Budget for his terminally ill son Lewis that could help transform his life while also saving the NHS money:

I think I am the luckiest and proudest father in the UK and I have thought that since my son was born in 2004.

Lewis Jeynes is a very special little boy living in Doncaster, and this year he will be 12. Many people, including the most prominent health professionals in the country, thought he wouldn’t make it this far in life … but he has.

Lewis has one of the rarest forms of Batten Disease, a terminal condition for which there is currently no cure.  Batten Disease has taken away almost all of Lewis’s abilities, but not his amazingly positive attitude to life. According to the evidence available about his illness, his life should have been taken away from us anytime from the age of eight years old, but he is still here fighting on!

Lewis has 24 hour care from his mum, complemented by a team of fantastic carers and health professionals who provide for his every need via various channels of funding.  As parents, our focus is to ensure that Lewis receives the care he needs, but more importantly to ensure he enjoys every waking hour of the day, whatever that takes.

Lewis doesn’t have one yet, but because he is eligible for children’s continuing care he qualifies for a personal health budget. Our view is that this type of care package has the potential to save the local CCG money, if the right offer from them was made … but what would it take to get there?

For Lewis, this would mean understanding his very complex everyday needs, appreciating the local employment environment, understanding the history of his circumstances, and acknowledging the significant emotional and psychological pressure that our family faces. It would also mean taking into account that Lewis’s life will be a short one, and realising that he is a 12 year old boy who doesn’t want to live in a hospital.

Can a personal health budget as complex as this be put together solely by NHS professionals who are not directly involved with the management of his care? I don’t think so. My view is that the best personal health budgets can only be delivered in partnership with us as parents, jointly agreed and reviewed with professionals from the local agencies.

This would ensure that we, as parents, had more of a say in what is best for Lewis. The indicative budget could be discussed and agreed at a face-to-face meeting rather than being submitted via a panel, which would allow us the opportunity to demonstrate what we felt would be best for Lewis.

From my experience to date, it feels as though there can be a disconnection between the agencies involved and us as Lewis’s parents.  But delivery of truly personal, personal health budgets will only work if the agencies ease up a bit and genuinely collaborate and co-design with those who know the recipient best.  In most cases this will be the family (who may need varying levels of support), but in some instances it may be the senior carer or the family social worker who visits on a regular basis and knows the family best.

In my opinion, the aim to have 50-100,000 personal health budgets in place by 2020 is only achievable if CCGs start to take more positive risks, and begin to hand real power back to patients and their families.

I understand that this might feel scary, but from personal experience and my work with the national peer network for personal health budgets, People Hub, it is clear that the goal here is for parents and families to have less, not additional involvement from local agencies, and be able to concentrate more on enjoying family time with their loved ones.  I for one know that these times are far more valuable than the times I spend in meetings reviewing Lewis’s care.

Health professionals must remember that the introduction of personal health budgets was not a mission to save money from local budgets, but a drive to delegate more of the management of care to those living with long term illness and disability.  By handing power back to patients and families, resources can be managed more flexibly and responsively to people’s individual needs.

In Lewis’s case a personal health budget would means we could purchase vital equipment promptly, and would have the power to stop the delivery of services and supplies which we no longer require. This has the potential to save the NHS money, and reduce costly unplanned admissions to hospital.

Trust us and we will help you to provide even better care for our super heroes like Lewis.