Julie Goodfellow, Ian Mackersie and Vera Mackersie

Patient led research published by national charity

Date: 16 June 2017

A patient driven research project supported by North East nurse Julie Goodfellow, has been published by national charity Cardiomyopathy UK.

Julie, a British Heart Foundation cardiac genetics nurse with the Newcastle upon Tyne Hospitals NHS Foundation Trust and a senior research nurse at The Clinical Research North East and North Cumbria, is based at the world leading heart and lung treatment centre at the Freeman Hospital. She worked alongside patients Cathy Stark and Ian Mackersie, who both have cardiomyopathy and Ian’s wife Vera to examine the impact of cardiomyopathy on patients and their families, friends and carers.

Ian was diagnosed with hypertrophic cardiomyopathy in 2015 and was fitted with an ICD (implantable cardioverter defibrillator). He said: “After having my device fitted I wasn’t sure what to expect and what we were facing. Julie recommended I join the support group at the Freeman and after speaking with others in the group it was clear we had all had very different experiences.”

Ian’s concerns resonated with Julie so she contacted the support group to explore patients’ experiences of cardiac care services in the region. Julie said: “This research is so important because it is entirely patient led which is a fairly unique approach in the health service.   

“I originally approached the cardiomyopathy support group led by Cathy, to ask for their opinions.  I wanted to know what patients need from healthcare professionals when they are diagnosed, or going through a crisis. What support do they get? What is done well? What could be done better? They responded so enthusiastically that it led to us designing this research project.”

Cathy Stark runs the cardiomyopathy support group at the Freeman Hospital. With a background in academic health related research, Cathy was keen to look more systematically at the range of experiences that members reported.

Over the course of two years, the team interviewed patients and family members about their experiences of the healthcare system and cardiac care services in the North of England. Through a series of in-depth interviews, they also investigated the impact of the condition on the physical and emotional health of patients, as well as their families.

The project highlighted that practical, emotional and clinical support is needed, although not always currently provided, at key points throughout the patient journey including at diagnosis, during a change in condition and during the fitting of ICD’s.

It was also shown that emotional support is vital not only to patients but to their family, friends and carers too. Ian’s wife Vera interviewed all the carers involved in the study, she said: “It was so important that this research gave carers a voice. After Ian’s diagnosis I worried about what ‘back to normal’ would look like, the support group was so important to me, being able to speak to others who understood my worries and feelings was so valuable.”

Findings from the research are already having a positive impact. The research has contributed to Cardiomyopathy UK being awarded National Lottery funding to increase the number of support groups nationally. Julie was also recently awarded a Clinical Excellence Award and this, along with her research, has contributed to her being awarded a one-off charitable fund of £120,000 to support patients and raise awareness of cardiomyopathy.

Julie said: “I’m so excited that Cardiomyopathy UK have published this research on their website, it has taken almost 2 years to complete and I hope that the findings can now help us to develop the support network available to patients.

“I am hoping that locally, the findings will support the case for better provision of a more comprehensive and robust service to people affected by cardiomyopathy and other inherited cardiac conditions.”

  • Summary:
    A patient driven research project supported by North East nurse Julie Goodfellow, has been published by national charity Cardiomyopathy UK.
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