Cancer patients from the Fylde coast gave their views at a special event to help plan the future of cancer services.
The ‘Cancer Patient and Carers Listening Event’ in Blackpool was the first of its kind in the North West and organisers said the response from patients and carers was overwhelmingly positive.
Organised by Blackpool Teaching Hospitals, Macmillan Cancer Support and Clinical Commissioning Groups (CCGs) from Blackpool and Fylde and Wyre, the ‘open space event’ took place at the Hilton hotel in the resort on September 22.
Forty six people of all ages discussed their experiences as patients and carers. The aim was to identify common themes so that cancer services can be improved for everyone.
Tom Noel, Macmillan Development Manager, said: “The open space event was a way of inviting patients and carers to share their collective experiences to improve cancer services.
“We had an amazing turn-out and we are planning to have at least two more events to engage with people affected by cancer.”
Beryl Moran from Poulton, who is recovering from cancer, said: “One of the problems I had during treatment was information overload.
“I have recently finished my treatment but when I was first diagnosed I was given lots of booklets and information to take home. The amount of information needs to be adjusted to suit the patient. Everyone in the group today thought the same.”
Steve Tingle from Thornton said: “For me it’s been nice to find that other people think the same things as me.
“I had problems with my diagnosis and how that was handled. They weren’t able to tell me that I had bowel cancer until after the operation.
“I had been dealing with a lot of things myself so it has been good to say to the professionals that more support is needed.”
David Robinson from the Swallows cancer support group in Cleveleys said: “I think this event is a very good thing.
“People have been asking questions and saying what support they need.
“I had major surgery for head and neck cancer in 2009. I’ve come here to see if I can help in any way. The NHS in Blackpool is absolutely awesome.”
Dorothy Miller from Blackpool said: “I’ve enjoyed being part of the event because I support my friend who has had cancer.
“The event has helped me to be more aware of what is going on and to put my ideas forward.”
Kenneth Leighton from Bispham said: “When I was 85 I was diagnosed with skin cancer which was caused by sunburn when I was in the Army.
“It started on my head and went down to my ear. It was very aggressive and I had a several operations. I’m back playing table tennis now!
“Being involved with the event has been very interesting. We spent a lot of time talking in groups. It’s good to be able to help others.
“You’ve got to be positive. I told the doctors: “We will win!”
“The event has been very uplifting.”
Dr Karen Green, a Clinical Psychologist for the Trust, said: “This is an absolutely fantastic event.
“It has been a great opportunity for us to capture peoples’ stories about living with and treating cancer.
“Events like this where people can share their experiences are brilliant because they can help to shape the future of patient care.
“While many people now live after cancer treatment, there is often a life-changing impact.
“That is the new challenge. People need follow-ups and support. They need access to the right sort of services to live well after cancer.
“This event is helping to establish what sort of services need to be provided.”
Tony Eaton, Macmillan Skin Cancer Clinical Nurse Specialist for the Trust, said: “This event has provided an opportunity for people to tell us what we’re doing well and what we need to improve on.
“As professionals we don’t always know what it feels like to be a patient. What we think might be appropriate, may not be what suits patients.”
At the event people sat in a circle and then split off into smaller discussion groups. All of their ideas were noted down and common themes were identified.
The four most common themes on the day were communication, care at home, life after treatment and having someone to talk to about issues.
Tom added: “A lot of people have said they might be able to help in some way.
“Everyone seems energised and we have had lots of great suggestions.”
Katie Rimmer, Commissioning Officer from Fylde and Wyre CCG, said a Cancer Steering Group for Blackpool, Fylde and Wyre is in place and the group hopes to have a Patient Sub Group.
A Cancer Strategy for the next five years for the Fylde coast has been developed and the Patient Sub Group could help to implement that strategy.
Deborah Loftus, Lead Nurse for Cancer and End of Life Care for the Trust, thanked everyone for taking part in the event.
She said: “Thirty six people have already pledged their support for future events and to be working closely as partners to make improvements for the future.
“This event is unique in the North West of England. We are making a great stride forward.”
For further information about this press release please call the communications team at NHS Blackpool CCG on 01253 956594.