Navigating Health Policy: My Experience at the Conservative Party Conference 2023
by Andie Miles, Bladder Cancer Patient Advocate
The importance of engaging with health policy as a bladder cancer patient
On a sunny Saturday morning in November 2011, a letter was delivered that turned my world upside down. My Biopsy results concluded that recent symptoms I had been experiencing of blood in my urine was in fact bladder cancer. I was diagnosed with stage 3, T2 growth, and I needed immediate treatment. After a whirlwind few month consisting of chemotherapy, followed by a radical cystectomy (completed with a Neo Bladder), I eventually became a Bladder Cancer Survivor.
Fast forward to 12 years later – after many years were spent adjusting to the new me – I came across a bladder cancer charity called Fight Bladder Cancer. The opportunity came up to get more involved in the charity, through initially being a patient representative at the upcoming Conservative Party Conference from October 1-4 in Manchester. So, I put myself forward, backed by my experience of 12 years living with the life changing effects that Bladder Cancer had on not just me, but my family, friends and career.
I felt empowered to engage with policy makers, organisations, and other professionals, to share the aims and objectives of Fight Bladder Cancer, my extensive experience of living with bladder cancer, and how it has impacted my family members. This blog highlights my key takeaways and experiences that I had throughout the conference.
Meeting with your Member of Parliament (MP)
The importance of having a voice in policy as a cancer patient. A summary of the discussion and commitments made by Members of Parliament.
At the conference, I was excited to be able to meet with my MP, Simon Jupp, and we discussed the various symptoms/presentations of Bladder Cancer, as he didn’t have a high level of awareness of the initial early signs of Bladder Cancer. I highlighted some challenges that Bladder Cancer patients face with early diagnosis – including the lack of national standards for primary health care, and the postcode lottery in accessing fast track diagnostic services in the UK. I also highlighted the importance of bladder cancer care pathways for early diagnosis and treatment and the urgent need for a National Bladder Cancer Audit to help us understand where services are appropriate and most effective.
Simon was very impressed with the work and information that Fight Bladder Cancer had already produced and gladly took the relevant information and handouts that I had with me. We agreed to meet up again to discuss issues regarding support services for patients in East Devon in the near future.
Simon Jupp later wrote about the conversation that we had, you can read it here: https://www.simonjupp.org.uk/news/meeting-constituent-conservative-party-conference-who-attending-behalf-fight-bladder-cancer
Meeting other charities
My experience meeting with Cancer52
Wow, what a privilege it was to meet with Cancer52, another charity who had an amazing team. I had arrived early at the conference and spent several hours wandering around, which was starting to feel quite isolating, like a fish out of water. After meeting with Jen and the others from Cancer52, it was like being part of a caring family, all supporting each other. I was the only patient representative within the group, the others represented freelance workers, full time charity workers, all from various backgrounds working within the health care charity sector. We bonded throughout the conference, and attended the forums together, I found being part of the Cancer52 charity invaluable.
Summary of the Forums that I attended on various topics
Key takeaways from the ‘Future of health and care in the UK’ forum
This was my first forum and I didn't really know what to expect. The discussion didn’t have a great focus on future health care policies. I found it concerning that emphasis was mainly on how to manage the aging population, and the financial crisis that will undoubtedly occur, but there was not a lot of discussion on improving early diagnosis and care pathways for cancer.
Key takeaways from the ‘Hire, Train, Retain: Future-proofing the NHS Workforce’ forum
There was a lot of discussions regarding specialist trained staff within the NHS and the need to address the workforce shortages in the NHS. The main focus was directed at the lack of joined up working systems and the need to get effective IT infrastructure in place so smooth effective Care Pathways can be established not only within the numerous NHS trusts but other non-NHS health care providers including, opticians, physiotherapists, and more. In my opinion as a previous NHS ward manager, to have an IT system that enhances joined up working within the NHS but linking with other health care providers could and would benefit the early Care Pathway for Cancer patients and improve patient experience.
There were some very radical ideas being discussed the main one overriding from all the panelists was to improve working conditions, and all of the panelists from a health care background said that a solution is to ‘provide hot meals and breaks for all staff, on day and night shifts’. I must add that as a student nurse in the early 1980's we always had access to a freshly cooked meal irrespective of what shift we were working, and although this might seem odd, I have to agree with the panel that staff need to feel valued and the basic to have access to fresh cooked food and breaks, and access to parking, which seems like a no brainer.
The most radical solution from Dr Sandesh Gulhane MSP was to cut all the tiers of NHS management to 1 business manager who would have over riding decision making and have more staff in the work place. His rational for this proposal was apparently he had experience of requesting a hospital bed and as a GP he had to go through 5 individual managers from various NHS departments to be given access to bed information. As a previous ward manager, I can relate to the frustrations of multi-tier management systems and lack of actual workforce on the ground. During his Q&A he mentioned Deep End Practice which is being used throughout the Scottish Health authorities and recently started by selected Welsh health care authorities.
Key takeaways from the ‘The Road to Superpower Status: The UK as a Hotbed for Clinical Trials’ forum
Later stage clinical trials to develop new medicines and vaccines are becoming increasingly scarce in the UK. Throughout this forum the main issue highlighted was to reduce the regulations inhibiting access to clinical trials in the UK. There are obvious benefits for accessing clinical trials in relation to trials that are experiencing restrictions that could help diagnose early-stage cancer and reduce the need for cystoscopy for bladder cancer patients diagnosed with non-invasive cancer.
Key takeaways from ‘Levelling up Health Care with Dr. Ben Spencer MP’ forum
This forum was extremely interesting and highlighted disparities in health care provision in the UK. I managed to get chosen for the Q&A section, so combating my nerves, I asked the panel to discuss: "The disparity in auditing and standardised care pathways of cancers outside the big 4, especially regarding Bladder the 5th biggest cancer and one of the most expensive overall in treatment and maintaining ongoing care pathways". My question got a good response from the panel as expected, with agreement that National audits and standards are needed and should be accessible to all within the UK. I managed to have a conservation with Dr Ben Spencer after and give him our Fight Bladder Cancer information booklet, and he seemed sympathetic and focused on all areas of health sectors that are not main stream - from cancer to mental health.
Key takeaways from ‘Prevention is Better than Cure’ forum
I found this forum the most beneficial in terms of the group discussion and the Q&A. There was a lot of information regarding clinical trials that came from this forum. There was discussion on prompting early screening schemes, which of course would benefit Bladder Cancer as we know the earlier the diagnosis, the better the success rate, and hopefully reduce the need for radical surgery.
Key takeaways from ‘How to fix Britain’s cancer crisis’ forum
Cindy Yu speaks to Elliott Colburn MP, Karol Sikora, Katharine Halliday and Owen Jackson about what’s behind Britain’s cancer crisis and how to fix it. I was able to speak on a 1-1 with both Elliott Colburn, Chair of the All-Party Parliamentary Group on Cancer and Owen Jackson. I told them about Fight Bladder Cancer and gave them FBC’s information and literature. Both of them said if Fight Bladder Cancer isn't on their mailing lists, they will recommend we are added to mailing list.
Conclusion
Overall impressions and takeaways from the Conservative Party Conference
I must say, it was a great honour and I feel very humble to have been able to represent the charity at this event. I hope that being a patient representative and the insights that I shared with MPs at the Conservative Party Conference was able to give decision-makers an understanding as to how Bladder Cancer can impact the life of not just the individual but the wider community. Plus, with my background in health and social care, I found the discussions on the NHS crisis rather interesting. Change within the system is definitely needed, and Fight Bladder Cancer needs to be part of the change.
Andie Miles
Bladder Cancer Patient Advocate and Volunteer with FBC
