Shaping the experience of future patients on our cancer wards

What is a Patient User Group? How do they work and why do we need them?

Fiona Macdonald, a patient who received treatment at The Christie Private Care, part of HCA Healthcare UK, explains why she wanted to become a member of our cancer patient user group and how it benefits patients coming to HCA Healthcare UK for treatment.

What is the patient user group and how did you become involved?   

The patient user group is an initiative, made up of lots of different people who all have a shared interest in making a patient’s experience at HCA Healthcare UK the very best it can be. Existing patients, past patients (like myself), staff and HCA UK management are all members of this group – and we meet every couple of months for a few hours to see what we can do to improve the patient experience.

When I was first introduced to this idea from a member of the team at HCA UK, I thought it was a fantastic idea. I’m well past my treatment now, but no matter how much time passes, I will never forget how traumatic it was to lose my health in a heartbeat. The shock of being diagnosed with cancer is incomprehensible to those who have not been through the experience, so I feel that my perspective is incredibly important. It feels empowering to be able to assist in a small way to improve the overall experience of existing patients.

What is your role within the group?  

My role is to enter every discussion with the patient’s perspective in mind. I have been in the patient’s shoes and can therefore offer appropriate advice. Not only do I attend the regular patient user group meetings, but I also attend ward accreditation, where I go into the ward and chat to existing patients and understand more about how they are finding their treatment. Patients often like to talk to others who have gone through a similar experience – and will be more honest with someone who isn’t directly attached to the hospital.

I am also often a sounding board for the HCA UK team. Sometimes I’m asked to review patient literature and give my thoughts on how a patient would react to such material, so that changes can be made before they are sent to the printers. My pet hate is acronyms – very few patients will know what a lot of them mean!

How does this group help current patients?

Ultimately, by being part of this working group, we’re able to put the patient and what they might be thinking or feeling at the forefront and to be the basis of any decision-making. For example, often it’s difficult for food providers to understand what patients might need with regards to the type, quality and quantity of food. We sometimes get to sample the food (a very nice exercise!) and from there can give advice on the suitability of the content for patients, especially if they are very sick. Pre-COVID-19, we also organised a meeting, where existing patients could meet past patients. There were different sections within the room with information about radiologyphysiotherapy, nursing and so on, and it was lovely to mingle with the patients and be there to answer any of their questions. The feedback from this meeting was exceedingly positive – many patients said that it helped boost their morale – after all, we’re examples of those who have gone through treatment and come out of the other side. I think for them it’s nice to meet us in the flesh rather than just read about previous patients and their experiences.

I just want to add too that this isn’t a job for me and doesn’t come with set responsibilities and attachments to the hospitals – it's up to me how involved I choose to be. I just simply love knowing that I might have made a positive difference to someone’s life when they’re going through a difficult time.

Learn more about the care we offer to cancer patients