Ulster Hospital’s cancer forum gives patients a voice to help shape services

Patients who are going through, or who have had the ‘lived experience’ of Cancer, from diagnosis to treatment can take part in the Forum to discuss with staff what services should be provided to help those and their families dealing with their own Cancer journey.

Forum member Danny Rodgers was diagnosed with Hodgkin’s Lymphoma and who is now in remission, describes the Forum as, “empowering.”

He said: “By becoming part of the Forum you are getting the chance to meet people who are on the same journey as you.

"When I was first diagnosed, I did research and looked on the Macmillan website and listened to videos of patients who were telling their own stories.

“By doing this it gave me the confidence to face my diagnosis, not just for me, but for my family as they are going through this with me too.

“Being part of the Forum is a way for people on their Cancer journey to talk to others, especially in terms of contributing to the new Macmillan Centre here at the Ulster Hospital.

“We share lots of information such as brochure design and we all share our lived experience. Sometimes brochures can be a bit ‘wordy’ so the Forum would try to simplify it.

"Being part of the Forum is like a Peer Mentorship in that you are giving your experience and it’s a reciprocal journey.”

Consultant Nurse Skin Cancer and Co-Chair of the Cancer Services User Forum, Sheena Stothers commented: “The Forum is very important as the members are patient advocates.

"The patients who sit on our Forum actually have that ‘lived experience’ of cancer and we really want to hear their views and it is really important to capture that.

“Many times we hear from patients who have gone through their Cancer treatment and want to give something back.

"The Forum is a very good opportunity to develop patients views.

"Their feedback is so very important in shaping services we offer. We need to hear that patient’s voice.”

Macmillan Health and Wellbeing Co-ordinator Karen Kelly explained how the aim of the Forum is to, “Meet the needs of the patients.”

She continued: “It’s impossible for us to do that without hearing what our patients need. It’s really important for us to design services along with patients.

“The Cancer Services Forum allows patients to hear first-hand about the services we provide and of any developments we are making and gives them the opportunity to share any views. It is only by hearing the service users voice that we can get it right.

"We are totally dependent on their expert knowledge of what it is like to use the service and what that direct experience is like for them and how we can mould our services to meet their needs.

“The patient’s voice is built into everything that we do.”

For further information on the Forum contact [email protected] or [email protected].