Inspiring others through our stories of personal health budgets

Following an event earlier this month which brought people together who have personal health budgets, Lived Experience Advisor, Sarah Woodhouse, explores the power of connecting people through stories and inspiring confidence in others to take the first step in ensuring they get the care that’s right for them. 

I recently walked away from an event feeling exhilarated and proud to be part of a community that, despite their own adversity, are willing to support others to achieve the same freedoms, choice and control that they have through personal health budgets.

The #myPHBstory launch event, developed by Peoplehub and supported by NHS England, brought together people with personal health budgets to share their experiences and form new connections.

At the event, we launched the hashtag #myPHBstory as a way to encourage people to connect using social media going forward, and be able to share their stories with others who might benefit.

I attended as a member of the Lived Experience team in NHS England’s Personalised Care Group, but also as a representative of my family; my brother Dan has a personal health budget. So I know first-hand the difference it’s made to him and my family, keeping my brother safe at home, bringing choice and control and crucially enabling him his independence.

When people first find out about personal health budgets they consistently say they want to hear from someone else that has benefited, and this event was an opportunity for people to share what worked for them.

I’ve never met anyone who would change having a personal health budget; it brings choice and control at times when life can seem so far beyond your grip. It can be an anchor to balance your life upon.

As Robyn Chappell described it in a recent tweet: “Injured 2006, finally released from hospital 15 months later needing 24/7 care. I survived (just) for 8 years with a generic care package, but only started living again when I got my PHB in 2015. Independence, quality of life and being “me” is #myPHBstory.” @RobynFChappell

Why are stories important? Think about your favourite book, what is it that means so much to you, the character, the plot or an affinity to one of those? One of mine is Tuesdays with Morrie; it is food for my soul when I need to touch base with a positive outlook through difficult times. Morrie has Motor Neurone Disease and reflects on “finding perfection in [the] average day”.

This resonates with me as it might with other people who have personal health budgets: that they don’t make life perfect, but they can make things considerably better. By encouraging people to tell their stories we want to give hope to people whose health care and support may not be working well that things can be different!

Sharing stories can give people an idea, or a map of what to expect, and whilst not everyone will experience the same journey, they can give just enough of an insight to give confidence to people to take that first step.

This is our hope with personal health budgets, that more people are empowered to take their first step towards ensuring they get the care that’s right for them.

The launch day was the first opportunity to connect, but it doesn’t end there.

You can share your story and encourage others to share theirs by joining the conversation on Twitter: #myPHBstory. Join us as we continue to share images of possibility, build a community of experience and celebrate our achievements so far!

Follow me @sarahlouwoody

Sarah Woodhouse

Sarah joined NHS England’s Personalised Care Group in December 2017 following a two year career break.

As a Lived Experience Advisor, Sarah’s role involves building awareness of personal health budgets and Integrated Personal Commissioning, and developing the evidence base as well as promoting the benefits of peer support. Sarah supports the management of a personal health budget for her brother Dan, who has a spinal injury and underlying condition called Morquio Syndrome.

Sarah graduated with a degree in Law and Public Policy and her career has focused on inclusion and asset-based community development. Sarah has previously worked for the Department of Work and Pensions and in local government on a variety of policy and partnership roles covering equality, diversity and community cohesion and resilience. Most recently Sarah undertook a number of project management roles, managing a social prescribing project for Groundwork North East and Cumbria, called Green Activity and working for the North of England Commissioning Support Unit to develop Stockton-On-Tees’ Integrated Personal Commissioning demonstrator programme.

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  1. pam says:

    Thank you for sharing. I used to have a personal health budget first of all for different items, then I got assessed by continuing health and ores enough to enable me to have a PHB for care. Then everything went pear shaped. I am at present appealing the decision which was made on observation and not fact. Then when I developed conditions involving admission X 2 within 14 days, none of this was looked into. They are stating that any care that can be provided without a Registered Nurse on a regular basis does not meet the need of a PHB. So for all of you out there fighting every step of the way’ keep on fighting and some one somewhere may actually listen to your need. In fact for the deprivation I have had to endure all I can say, all I have had is an apology with nothing to remedy the need. 2 years later I am still appealing in Social Services. If you have the energy or someone to help then keep going.