On Wednesday 4 February the government released the National Cancer Plan for England, which will drive cancer care.
The new National Cancer Plan for England is an important opportunity to improve how people are diagnosed, treated and supported. For the first time, Government has made a clear commitment to focus specifically on rare and less common cancers, including Waldenstrom’s macroglobulinaemia (WM) and lymphoplasmacytic lymphoma (LPL).
Summary
The plan follows the three shifts at the heart of the NHS 10-year Health Plan of hospital to community, analogue to digital, and sickness to prevention. At the heart of the government’s plan are three broad ambitions, each of which has particular importance for our community:
- Driving up NHS cancer performance
- A global leader in cancer outcome by 2035
- Designing cancer care around people’s lives
Alongside these three central ambitions, the plan also has chapters dedicated to research and innovation, children and young people’s cancer, and – importantly for the WM and LPL community – rare and less common cancers. You can read more details about these below.
It is encouraging to see the plan specifically address the inequalities experienced by people with rare and less common cancers, many of which are familiar to people with WM and LPL, including poorer diagnosis experiences, limited data and understanding, and fewer treatment options.
There are some gaps in the plan, most notably around funding and workforce, and we look towards Government and the NHS Workforce Plan due later this year to help understand how measures in the plan can be fulfilled.
Making sure your voice is heard
Last year, WMUK responded to the government’s call for evidence in response to the National Cancer Plan, ensuring that the perspectives of the WM and LPL community were part of the conversation, not an afterthought.
Our response was informed by results of our Big WM Survey, that collected the experience of over 370 members of the community, analysing data, and direct consultation with WM and LPL patients.
Through alliances and other organisations, such as the Blood Cancer Alliance and Cancer52 who are championing the needs of patients with blood cancers and rare and less common cancers, we’ve continued to raise the WM and LPL voice throughout the consultation period.
What’s next?
As the National Cancer Plan moves into implementation, we hope it will mark a genuine turning point for cancer care in England. However, it is now our job to hold the government accountable.
We will do this by continuing to build relationships and partnerships with key individuals and organisations, adding our voice to the wider rare and blood cancer communities to monitor the commitments in the plan and push for fair, high-quality care that reflects and improves the unique experiences of people with WM and LPL.
The Plan in detail
1. Driving up NHS cancer performance
- Meeting the National Wait Times Standards for all cancers by 2029
- Improvements to diagnostic testing
- Referral pathways to be improved
This ambition is built on a promise to meet national waiting time standards. We pushed for better capacity for testing and guidance for GPs around haematology referrals for those with non-specific symptoms, to ensure people received the right testing in a timely way.
The plan’s commitment to waiting times is underpinned by improvements in tests and how people are referred, and we hope that these will focus on all cancer types including rare and non-stageable ones such as WM and LPL.
2. A global leader in cancer outcome by 2035
- A commitment that three in four cancer patients will be cancer-free or living well after five years by 2035
- Early diagnosis targets for non-stageable cancers
- Measures to reduce the variation in access to treatment
- Development of ‘Cancer Manuals’ to standardise quality of care
The plan focusses here on early diagnosis, including a commitment to targeting non-stageable cancers.
Currently, early diagnosis targets focus on stageable cancers. This is where someone’s cancer is given a number (1-4) depending on how far the disease has progressed. However, cancers like WM and LPL cannot be staged. Since no data is currently monitored for early diagnosis in non-stageable cancers, they are more likely to fall through the gaps when it comes to improving diagnosis and care.
WMUK has been pushing for the adoption of non-stageable cancer targets alongside other organisations in blood cancer and we are heartened to see that the plan recognises the importance of including these measures.
Not everyone across the UK currently has the same access to cancer care. We know from our own data analysis that where you live can affect how quickly you are diagnosed, whether you can access expert care, and which treatments or support services are available. All of this has a direct impact on outcomes and quality of life for people affected by WM and LPL.
In our response to the government we called for measures to ensure there was more equitable access to treatment and care, and it is good to see that there is a commitment to reduce the variation in access to treatment and standardise the quality of care through the development of ‘Cancer Manuals’.
3. Designing cancer care around people’s lives
- Access to both pre-hab and rehab around treatment
- Personalised care plans to treat the individual
- Holistic needs assessments for cancer patients
- Better access to appropriate mental health support
- Diagnosis Connect expanded with a focus on rare and less common cancers
The need for holistic and personalised care that stretches beyond treatment is something the community has fed back to us time and again. This was a key point in our response to the government, and it’s promising to see commitments to care before and after treatment in the form of personalised care plans and holistic needs assessments, as well as support with getting back to work.
The plan also has ambitions to ensure patients can access appropriate mental health support. With the majority of WM and LPL patients reporting negative impacts on their mental health since diagnosis, easy and widespread access to mental health services has the potential to really help more people live well.
Diagnosis Connect, an initiative rolled out last year to quickly connect patients with trusted information sources, will also be expanded with rare and less common cancers prioritised. This is important for the WM and LPL community for whom trusted and expert information is hard to come by – around 2/3 of patients do not receive WM-specific information upon diagnosis – and WMUK will be working towards getting information for our community included in this important resource.
Research and Innovation
- Expanding and creating equity in clinical trials
- Particular focus on rare and less common cancers
To improve outcomes for people with WM and LPL long term, we need more treatments. Therefore, it’s good to see a focus on expanding and creating equity in access to clinical trials, with a particular focus on rare and less common cancers.
Rare and less common cancers
- The Rare Cancers Bill to be fully implemented
- 13 commitments directly related to rare and less common cancers
- National Clinical Lead for Rare Cancers appointed to the Department of Health and Social Care (DHSC), and a Specialist Lead for Rare Cancers within the National Institute for Health and Care Research (NIHR) to ensure leadership with implementation of the plan in rare cancers
- Supporting GPs with innovative technologies to aid diagnosis in rare cancers
- Implementation of Jess’s rule to encourage GPs to rethink a diagnosis
We are particularly pleased to see a whole chapter dedicated to rare and less common cancers. The Rare Cancers Bill is expected to become law soon, and the plan states that it will be implemented in full.
A Rare Cancers Lead will be appointed to report to a reformed National Cancer Board, through which we hope to be able to advocate for the WM and LPL community via our partnerships. Having clear leadership for rare cancers will help hold policymakers accountable for delivering on the ambitions set out in the plan.
The plan includes a focus on improving GP diagnosis of rare and less common cancers, using AI diagnostic tools and safety-netting approaches. The plan also commits to implementing Jess’ Rule, whereby if someone goes to their GP with the same persistent or worsening symptoms, the GP should reflect and rethink their diagnosis. With 2/3 of people with WM and LPL reporting they visit their GP 3 or more times before being referred for further testing, this could be an important step in improving the diagnosis experience for our community.
