North London Partners in health and care

My experience of working as a Patient Representative at UCLH Cancer Collaborative

Carol
Patient Representative at UCLH Cancer Collaborative

UCLH Cancer Collaborative is the Cancer Alliance for north and east London. We bring together hospital trusts, primary care professionals, health commissioners, and people affected by cancer to improve early cancer diagnosis, outcomes and care for patients in our area. 

We have various opportunities for people affected by cancer to get involved in our work, including a Patient and Carer Network made up of over 80 people affected by cancer who either live, or have been treated for cancer, in the 13 boroughs we cover. 

In August 2017 we launched our Patient Experience and User Involvement Steering Group, made up of 8 patients and carers who work with us at a strategic level to ensure that people affected by cancer are represented across all our key areas of work. 

In this piece Carol, a Patient Representative on the Patient Experience and User Involvement Steering Group, shares her experiences of getting involved to shape cancer services.

My name is Carol. I am 56 and live in north east London with my husband, and my two children who are 20 and 14. For the last 23 years, we have lived in Hackney - a vibrant, fun and diverse borough. I was originally diagnosed with breast cancer in 2008, and after a year of treatment, I was pronounced symptom-free. However, in February 2015 I received the devastating news that I had multiple metastases in my spine, hip and liver, and was diagnosed with Stage 4 breast cancer. 

At the time of my second diagnosis, I had been working for 4 years at Macmillan Cancer Support, as the General Manager for London and South East England. Prior to that I worked for the NHS for over 25 years, starting out in nursing (where I had some experience of oncology and end of life care) and moving into roles across primary and community care commissioning, as well as spending 5 years as a self-employed management consultant. I also had personal experience of caring for my parents, who both died of cancer. 

Since my diagnosis, I have been coming to terms with my new self. I am still Carol - a wife, mother, sister, friend and colleague. I am learning to live with progressive disease and uncertainty every day. It is hard to plan ahead, so I plan my life around my 3-monthly scans and adjust when there are changes in my symptoms or scan results. 

I am no longer working due to my symptoms, yet am still active as much as possible. I am currently volunteering as a Compassionate Neighbour at St Joseph’s Hospice in Hackney, as well as being involved in the Social Prescribing Project at the Bromley by Bow Centre and more recently as a Patient Member on the Barts Health Cancer Clinical Board. 

My own care was initially at the Homerton Hospital, and now I regularly attend Barts Health Cancer Centre as well as my GP Practice and St Joseph’s Hospice Hackney. I will continue to do so for the rest of my life. 

When I saw the opportunity to become involved in the UCLH Cancer Collaborative Patient Experience and User Involvement Steering Group on Twitter, I immediately thought it looked like a great opportunity to influence, shape and improve cancer patient experience across north and east London. Since its launch in December 2017, the Steering Group has been meeting every other month alongside the Collaborative’s Programme Director and other key professionals. We are in the process of co-developing a new Collaborative-wide Patient Involvement Strategy, and implementing a set of principles to which will enable us to quality assure patient involvement work currently taking place across the Collaborative. 

One of the involvement opportunities I have most enjoyed since joining the Steering Group has been speaking with a group of GPs at a Primary Care Masterclass, in order to raise the profile of the increasing number of patients who are living longer with treatable, yet not curable cancer. GPs and primary care teams play a key role in providing essential support to patients and families in this position. We discussed how vital it is to improve communication between people living with cancer and primary care teams, oncology teams and hospices. There is a huge potential to improve the coordination of care through the development of shared digital records and test results. I am also interested in the growing importance and value of social prescribing, especially for people with long-term conditions including cancer. 

Another area I am particularly passionate about is supporting the implementation of the Recovery Package for all patients in the UCLH Cancer Collaborative. The Recovery Package is a group of four interventions – a Holistic Needs Assessment, a Treatment Summary, a Cancer Care Review and a Health and Wellbeing Event – designed to support and improve the quality of life of people living with and beyond cancer. Although the Cancer Taskforce  report outlines a commitment to ensuring that ‘every person with cancer has access to the elements of the Recovery Package by 2020’, there is still significant work to do in this area, as the number of patients currently receiving all elements of the Recovery Package is still very low. However progress is underway, and there is a firm commitment from commissioners and providers to recognising the importance of all aspects of the Recovery Package in their plans going forwards. 

User involvement at UCLH Cancer Collaborative is so important to ensure that the Cancer Alliance focuses on what matters most to patients. We need to go out to communities and teams and work together to focus on the areas that will have the greatest effect on patient experience. Together we can help to reduce some of the unacceptable variations and inequalities that we know still exist in the experience of cancer patients across London and also raise awareness of the importance of quality of life for people living with cancer, alongside clinical outcomes. 

Being a volunteer and being part of the Patient Experience and User Involvement Steering Group gives me hope, confidence, connections and a purpose - all very important things when living with cancer. I hope that by sharing my experience of working as a Patient Representative at UCLH Cancer Collaborative I can encourage many more people living with cancer in north and east London to have a voice, to share their stories, and to make a real difference by working as equal partners with clinicians. Often by involving patients, there is an increased willingness to test new ideas in care and to try new ways of doing things. 

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If you are a professional, patient or carer who would like to find out more about how we work with patients and carers to shape cancer services, please: