My cancer story and how the borough of Richmond will be getting better support for those living with and beyond cancer
Research by Macmillan Cancer Support has found that there are 2.5 million people living with cancer in the UK and this is projected to increase to four million by 2030.
My husband and I are both cancer survivors (fingers crossed, of course) and our experience of living with and beyond cancer, led me to want to use what happened to us to inform the improvement of cancer services and people’s experience of care, both across London and locally in Richmond.
I was treated for breast cancer in 2010 and am happy to say that everything went well with no major side effects or consequences from my surgery and radiotherapy treatment. Although I am acutely aware that many people have not got off so lightly.
However, in spite of that experience, following discharge from my main course of hospital treatment, I was surprised by the feeling of isolation and being alone. There seemed to be very little, if any, support from general practice. In fact, because my cancer was diagnosed via the breast screening service – I had no contact from general practice throughout my whole cancer journey – from diagnosis to treatment – from discharge into survivorship.
At this point, having cared and supported my husband through his cancer journey, I was already using my experience as a carer representative to get involved in the reorganisation of cancer services throughout London. My own personal experience as a cancer patient, as opposed to a carer, of course widened this perspective.
I soon became aware that I was not alone. There are many others affected by cancer. Particularly those who were suffering the side effects of treatment and reported experiencing the same lack of support or feeling of isolation. They also shared their experiences of getting little or no support from their GP practice. I acknowledge that many GPs and practices do offer and give fantastic support to their patients with cancer – but sadly it’s not universal.
The need to provide more support to those living with and beyond cancer in GP practices soon became a particular focus for me, both in my work in London, and also with NHS Richmond Clinical Commissioning Group (CCG), an organisation made up of all 28 GP practices in the borough of Richmond. I spoke to many people affected by cancer and time and time again I heard similar stories to mine:
- “I have to remind my GP about my cancer drug therapy.”
- “I felt lost following discharge – not knowing where or who to contact fur further care or support”
- “I never see the same GP”.
- “Could we have a cancer follow-up clinic at the GP practice?”
- “I feel as if I’ve fallen into a black hole”
- “There was a lack of signposting to groups that can support patients after hospital treatment”
Research which outlined the support needs of survivors, including those suffering from late affects and the consequences of treatment, led to development of the National Cancer Survivorship Initiative. This proposed a range of NHS services and support called a ‘recovery package’ to help improve quality of life for people living with and beyond cancer.
Both the national and London strategy on cancer supported this recommendation, which includes the provision of a cancer care review in primary care and I’m proud to have played a part in the development of this element of the recovery package.
The Cancer Care Review is a dedicated extended appointment with their GP offered to patients who have finished their main course of treatment to discuss their recovery and wellbeing and, where necessary, agree an ongoing treatment plan. Our CCG is to be congratulated as one of the first to commission this support for Richmond patients.