A stakeholder event designed to help us shape new aftercare services for cancer patients was a stunning success.

Dr Wendy Makin, Vanguard Innovation Lead for Living with and Beyond Cancer, said she was ‘overwhelmed’ by the power of the patients’ stories delivered during the event.

And she pledged: ‘I promise that these very important messages will go straight back to our project groups.’

Around 50 patients, their families and carers joined clinicians at the event – Transforming Aftercare Pathways: Your Voice – at The Christie to discuss proposals for new services for patients with early-stage breast, colorectal and prostate cancer.

Vanguard Innovation is exploring ways of helping patients with aftercare that departs from traditional hospital-based services and is more closely tailored to the needs of individuals.

The centrepiece of the event was a series of moving patients’ stories that set the context for the work and helped explain why new services may be required.

Julie Davies, who was diagnosed with breast cancer in October 2013, said that while much of her care was excellent, there was no plan which would have guided her through her treatment and explained what to expect. She was joined by her husband Scott who described the impact on him of Julie’s diagnosis.

Patrick Fahy, who was diagnosed with prostate cancer in September 2014, said that he benefited enormously from the help of a therapist and the continuity of care provided by a specialist nurse.

And Vanessa Denvir, who was diagnosed with colorectal cancer 12 years ago, discussed how her artwork had helped her express her emotions following her diagnosis and stressed the value of peer support.

A series of break-out sessions also gave patients, their families and carers the opportunity to share their experiences and suggest improvements to services.

Dr Makin said: ‘This is a very important day for us and there’s a real buzz in the room. It’s an opportunity for people affected by cancer to tell us their experiences which will feed into work getting under way to develop new models of care.

‘We’ve heard, for instance, from people who don’t know who to contact during their treatment, or whether there’s a plan, so we’ll take this away and work on improving things for them.’

Patrick Fahy added: ‘The event went very well indeed. I think it’s important to listen to other people’s experiences. In that the vanguard is trying to improve aftercare for everyone, I’m all for it. How can you not be in favour of that?’

Dr Makin outlined how the new aftercare services would benefit patients with the focus on:

  • A clear plan for patients, what to look out for and to report
  • Ensuring tests are efficiently organised and results are not delayed
  • Ways of keeping in touch with a patient’s cancer team, at any time
  • Making sure patients know what to expect after treatment has finished
  • What patients can do for their own wellbeing and future health
  • Ensuring patients receive advice quickly

To underline Vanguard Innovation’s commitment to listening to patients, the event was co-chaired by Dr Makin and Mike Thorpe, who was diagnosed with prostate cancer in February 2014 and is User Involvement Representative for Greater Manchester Cancer.

Here is a selection of quotes from attendees:

  • ‘Really excited by the prospect of the new pathway. Good discussions and opportunity to meet others’
  • ‘Very powerful to hear patients’ stories. Brings it home that it is very important  to improve services and communication’
  • ‘Care doesn’t just finish at the end of medical treatment!’

Watch our film of the event here

You can view Dr Makin’s presentation below:

View the presentation here