CRUK Early Diagnosis Conference – A Patient Perspective

Why am I here? As a patient rep – why did I join this band of people? – the grateful living, those who have loved and lost and the generally or professionally benevolent? Well – because of my personal background – my father died of an upper GI cancer only discovered late stage after years of regular private consultations for diverticulitis.  My husband’s diagnosis for a rare appendix cancer took over a year to establish.

They were both late diagnosed, as were other family members (an uncle and two cousins), so it seemed a good idea to develop an interest in earlier diagnosis.  Attending the Early Diagnosis Conference was an opportunity to see if I could contribute anything from these experiences.

The initial introduction to the conference was in the array of posters. Highly detailed, clever work to challenge and mitigate the disease; anyone affected by cancer would applaud the wonderful potential achievements of the projects shown.  With no medical knowledge I come from a world where objectives are much simpler and more measurable offering a clear return in a finite period.  Most of the poster projects were much more complex than this, and if the audience is academic, able to stand, read and analyse for many minutes each they did an excellent job.  If the audience is lay/non-medical many posters lack visual appeal and simple communication.  This is probably impractical in such a complex field.

After posters, came the presentations, a feast of charts and data, innovations and breakthroughs – so encouraging and positive to see this progress being made in a climate of massive under resourcing, the areas covered included; –

• Constructively exploration the potential of using AI, self-referral, optimizing screening and testing
• The challenges of meeting underserved areas and demographics was a key theme and many ideas and experiences were deployed to tackle this.

It was great to see so many well motivated professionals involved with so many great ideas and aims and inspirational to hear Professor Sir Mike Richards outlining how the importance of early diagnosis was recognised and the actions taken to improve stage and speed of diagnosis.

There is some Impracticality of patient representation – I applaud all with no reality checks – to do things that might drive great herds of the worried well into an already overcrowded space and wanting to see the implementation of every PhD proposal with no financial restraints.  Clearly that is unrealistic but for me the behavioural session that split us into small groups working with a framework to suggest improvements to diagnostic pathways was the clear winner because this is where we can really work together and patient representation can offer something worthwhile and actionable.

So, I was very glad to have the opportunity to attend and believe that the future is brighter because of work like this.

Written by Yo Green