Do you know how many people there are living in London who have had a cancer diagnosis?
At December 2017, it was enough people to fill Wembley Stadium two and a half times (about 232,000). By 2030, it’s anticipated to be around 353,000.
Unfortunately, we know that not everyone that survives their cancer lives well, which is why NHS England’s national cancer programme has been working towards a national quality of life measure for people who’ve had a cancer diagnosis.
In the Transforming Cancer Services Team, we’ve been funded by Macmillan Cancer Support on several pan London programmes that come to a close in March 2020, these are :
• Psychosocial support
• Cancer rehabilitation including physical activity
These programmes of work are incredibly important because they have shown the inequity of access to a range of services that affect people living with and beyond cancer. They have also highlighted the range of holistic needs that people experience after a cancer diagnosis, the lack of awareness in understanding consequences of treatment options through the cancer patient experience survey, as well as the impacts of not having these services for patients and on the NHS workforce. The programmes also demonstrate the benefits of having a ‘whole pathway’ approach – for example psychosocial support and prehabilitation services are an integral part of the cancer pathway even before diagnosis is confirmed. Getting people physically and mentally prepared for diagnostic tests and treatments has significant benefits on their treatment outcomes.
However, access to these three services are just some of the significant issues that people face once they’ve had a cancer diagnosis. Some consequences of cancer and its treatment can occur a long time after treatment starts, sometimes even years. And there are many consequences including an increased risk of osteoporosis, heart disease and getting another cancer.
In partnership with Macmillan Cancer Support, TCST hosted a Next Steps Event on 12 February 2020. We welcomed more than 110 service users, clinicians and commissioning stakeholders who came together to plan how they will take TCST’s work forward as well as South West London’s Macmillan primary care nursing and cancer project.
It was inspiring to see so many dedicated people wanting to prioritise these projects and to hear service users describe their own “one wish” for London. These wishes included, all new cancer patients to receive holistic personalised care planning and support, integrated holistic pathways of care, ensuring the needs of carers (including carers who are diagnosed with cancer) are identified and met, that primary care teams really support their patients with cancer as a long term condition.
The energy in the room was high – many animated conversations of ‘what are our must dos?’ and ‘how can we do it in our patch?’. This is demonstrated in feedback from one of London’s GP Leads who told us “thank you for such a brilliant session today; was so good to get a good overview, prioritisation and shared vision! Absolutely fantastic!”.
If NHS England is serious about quality of life being on par with cancer survival rates, then Sustainability & Transformation Partnership/ Integrated Care System leaders and Cancer Alliances must also address local issues that impede the quality of life for people affected by cancer. We think they need to:
• Reduce gaps in services with sustainable funding – we have sample business cases to demonstrate the case for change
• Educate primary care and community teams (in health and social care) about cancer as a long-term condition – at least 70% of people with cancer have at least one other long-term condition.
• Critically analyse their prevalent population to understand the profile of people affected by cancer in their patch – take a look at our innovative cancer prevalence dashboard
• Share local service directory information via the interactive Cancer Care Map
• Support their local services in collecting meaningful data that can be used for long term planning.
• Consider the specialised cancer workforce such as lymphoedema practitioners, psycho-oncologists, physiotherapists, dietitians, speech & language therapists, occupational therapists in cancer workforce planning.
• Finally, but no means least, please don’t reinvent the wheel! TCST has many resources to help London deliver change – comprehensive service mapping, service improvement tools, pathways of care, service specifications, template business cases – check the HLP website or email us at England.TCSTLondon@nhs.net.
It’s a big ask! But it is what is required if the NHS, local authorities and the third sector are genuinely going to support people to have the best quality of life possible. The NHS Long Term Plan outlines a number of key actions which are enablers of supportive care but these don’t go far enough.
My ask of London’s leaders – if not now, then when?
If you missed us at the event, have a look at our highlights.