Linda Young, a patient representative for St James’s University Hospital in Leeds, tells us her breast cancer story and why she got involved with the Service Pledge.

Thursday 7 February 2019      Guest blog
Linda Patient representative

My name is Linda Young. I am married with two daughters and two granddaughters. One Sunday morning in August 2016 I found a lump in my breast. From that point on everything went into slow motion. I was referred to the Breast Clinic at St James’s Hospital, Leeds. When the Consultant confirmed I had cancer, I cried. I cried because I was so scared. This was, for me, unknown territory.

Everything happened so fast, but it was a very worrying waiting game – lurching from one appointment to the next. I had a lumpectomy and was delighted when the surgeon told me she had got all the cancer out, and the three lymph nodes she had harvested were all free of cancer.

I suffered from cording after surgery, and needed physio to sort it out. It does not cause me any issues today. My consultant talked to me about having chemotherapy, but as the benefit to me was just 3%, I declined this treatment. I went on straight away to have 15 consecutive, and tiring, days of radiotherapy treatment.

The staff in all the departments I attended at St James’s were fantastic, supportive and encouraging. They were there to do the worrying for me, I was there to get better. I did, and I was discharged in January 2017.

I wanted to give something back

I was sent a survey from Breast Cancer Now asking for feedback about my patient experience at the hospital. I was more than happy to complete this. Being able to bring thoughts about my cancer journey at the hospital together in one place, which would ultimately get the attention of the hospital staff, was very uplifting for me personally.

At the end of the survey I was asked if I would like to volunteer to be involved in the Service Pledge. I ticked the ‘yes’ box. I wanted to give something back to the hospital that had looked after me. I wanted to help make their good patient service even better. I also wanted to make sure that they kept their focus on the patient; there’s a patient at the end of everything staff at the hospital do. 

I attended a focus group, where we were split into small groups and introduced ourselves. I enjoyed the contact with others. We all shared a common problem - breast cancer, but we all had very different experiences on our journeys through treatment at the hospital. We all had similar worries and concerns and I found exploring these together in a group discussion to find possible solutions was very therapeutic. 

Using our voice

After a telephone interview, I was accepted for the role of patient representative. A simple training pack soon followed in the mail so that I could prepare myself for the first meeting.

Breast Cancer Now sent us all copies of the survey results for us to read through prior to our meetings. Meetings with the other patient representatives, Patient Advocates and frontline staff were held at the hospital, along with tea and biscuits! (Our out of pocket expenses were paid for, travel and parking.) In the meetings, we reviewed and discussed the survey outcomes and, setting aside any personal issues we may have experienced with of our own treatment and care, prioritised them. As far as we could, we suggested improvements for the hospital to take forward. To be able to input our voices and thoughts into the big NHS machine and see our ideas come to life was fantastic. 

Working with Patient Advocates

The Patient Advocates were great facilitators. They made sure our discussions kept on track and that we did not get distracted from our objectives. The patient representatives were only knowledgeable about their own experiences and those shared in the survey. The Patient Advocates had a much broader understanding of matters and so were able to give guidance as to whether the changes we suggested were realistic and achievable.   

The hospital has committed to taking forward the recommendations made in the Service Pledge. This can only help to make St James’s Hospital’s treatment and care of all patients even better.