The power of lived experience, and a farewell to National Voices 

As I move onto the next step in my career, I wanted to take a moment to reflect on the strengths of working as a collective of voices to achieve change, and the importance of inclusion in health policy. 

My time at National Voices has been career defining. I was a very proactive member of National Voices when I worked at Alzheimer’s Society as its policy manager. While there, I was invited to bring someone to share their lived experience of living with dementia to a roundtable with Wes Streeting, then shadow health minister. I was able to see first-hand the impact real-life stories have on MPs when campaigning for change and I knew then that, having made the move from journalism, policy and influencing was the sector that would become my home.  

I soon joined National Voices as a trustee where I learned the ropes from our Board Chair, Helen Buckingham. I joined the trust board when I was a policy manager, so to our more junior policy members out there do take this as an example of why you should back yourself if you think you have something unique to add to a role. Our value comes from all our life experiences. 

Which then brings me to my time at National Voices. I joined as a Director of Policy and External Affairs, initially in a job share with Rebecca Steinfield, an incredible campaigner for change. I knew National Voices, with its focus on health inequalities and lived experience, was a place at which I could drive real change, not only because of my pragmatic but creative approach to policy influencing but because of my own real-life experiences with multiple, incurable long-term conditions.  

Living with Cystic Fibrosis, Diabetes and a double lung transplant means I have seen a lot of the good and the bad of the NHS. I have used these experiences to share my knowledge with senior stakeholders where I thought it would make a difference.  

Whether speaking from my own experiences or those of the wonderful people you, our members, advocate for, I have always championed the importance of lived experience and really listening to, and acting on, the concerns being raised by the people for whom the NHS was built. That’s because I understand first-hand the frustrations that arise if we do not, and the opportunities that can be created if we do. 

The collective voice of National Voices has really grown over the last few years, as we build a pan-conditions, pan-member consensus on how to make change by putting patient experience and inequity at the centre of all we do.  I am so proud of what we have achieved to help make life better for everyday people. 

Some of my standout moments include: 

• Leading a coalition of patient voice stakeholders, we secured a commitment from Royal Mail to introduce a new NHS barcode for all NHS letters to drive down digital exclusion.  

• Helping to shape the DHSCs’ 10-year health plan, securing a commitment to reintroduce a Patient Experience Director, alongside additional commitments to increase the focus on patient experience/outcomes as a measure of success for the NHS.  

• Leading research with minoritised communities to support the development of NHS England’s new integrated care board translation and interpretation framework.  

• Being at the forefront of the medication shortages debate, including influencing a major report to include patient impact, and changing of legal rules to enable pharmacists to prescribe alternatives. 

As I look to the future, there are many new challenges on the horizon across the health and care system from new neighbourhood models, very challenging financial environments for the VCSE sector and supporting and critiquing the government to implement the 10 Year Plan.   

But I urge you to always come back to these challenges by embracing the creativity that can be bought to any situation by ensuring there are a diverse range of voices in the work that you do. That could be through meaningfully including people with lived experience in your work or hiring diversely so your team is one that brings their own learnt life skills to bear on making change. 

I look forward to seeing National Voices, and the members that make it the force that it is, continue to flourish, and do keep in touch! 

You can read my final comment piece in HSJ as a part of National Voices here.