In this blog post, Sally Greenbrook, our Senior Policy Officer, runs through the key improvements we feel are needed to improve services for breast cancer patients in England.
In January this year, NHS England convened an independent taskforce charged with developing a five year strategy for cancer services. Chaired by Harpal Kumar, Chief Executive of Cancer Research UK, the taskforce’s mission is to deliver the vision set out in the NHS Five Year Forward View with the overall aim of improving cancer survival rates and therefore saving lives.
As part of this process, we were asked by the taskforce to lay out what we wanted to see in the new cancer strategy that would have the most benefit for patients.
Improve services for secondary breast cancer patients
Nearly 10,000 women die of breast cancer every year in England and the majority of these die from secondary or metastatic breast cancer – breast cancer that has spread outside of the breast to another part of the body. While secondary breast cancer can be controlled and many women live with the disease for several years, there is no cure and it is ultimately terminal. The improvement in breast cancer outcomes, driven by the development of better treatments, has not yet extended to secondary breast cancer.
This is why one of our first priorities is to see NHS England committing resources to improving outcomes for secondary breast cancer patients. This includes improving access to clinical nurse specialists and ensuring that secondary breast cancer patients have all their needs assessed appropriately. It also includes improving access to clinical trials for secondary breast cancer patients to ensure that we keep developing new and better treatments.
Data saves lives
Collection of data (such as number of patients with secondary, how many get secondary cancer in the bone etc.) regarding secondary breast cancer patients has historically been very poor – to the extent that we don’t even currently know how many people are diagnosed with secondary breast cancer every year. We also cannot predict precisely which breast cancers are likely to return, a prerequisite to the development of secondary disease. This not only makes it difficult to plan services but also means that women who have been successfully treated for primary breast cancer must now live with the knowledge that their breast cancer could come back at any time.
We want to see a commitment in the cancer strategy to deliver better data collection for secondary breast cancer, including incidence and survival. However, data collection alone is not sufficient; it must be accompanied by a commitment to use this data to improve services and ensure that women with secondary breast cancer can access all the support they need, including emotional and palliative care.
Opinions that matter
There’s no doubt that collecting clinical data is important. But collecting human data – the opinions of patients themselves – is also vital for improving services. The National Cancer Patient Experience Survey (NCPES) has been a useful tool for cancer services as it gathers feedback from patients which can be used to build both a national picture of how cancer services are viewed by patients and provide comparison data for hospitals to use in their own service improvement. However, there is currently no mechanism or requirement for NHS Trusts to act on the data received from the NCPES and use it to improve the services they provide. This needs to change; the opinions of patients can’t be ignored.
But hearing patients’ views is not enough: we also need NHS England to ensure resource is provided to analyse and utilise this information. The National Cancer Intelligence Network (NCIN) has fulfilled this function in the past, but the reorganisation of the NHS has stripped the resources the NCIN needs to continue to work at the standard it has done in the past.
We recommended to the taskforce that the Cancer Strategy includes strong commitments to data collection – both in terms of patient experience and staging and incidence data.
Pricing of and access to cancer drugs
Our final recommendation was to re-think how drugs are made available to patients. Anyone who has been following our campaigns over the last few months will not be surprised to learn that we believe the cancer strategy needs to ensure that a sustainable system for access to new and innovative cancer treatments remains a priority for the NHS.
Work is ongoing in this area – NHS England has set up a working group involving NICE (the National Institute for Health and Care Excellence), charity representatives (including ourselves), the Department of Health and the pharmaceutical industry to start hammering out ideas. We are encouraged by the work that has taken place so far and believe it is vital that this work maintains momentum, with the cancer strategy including a commitment to ensure current and future access to cancer treatments.
Although the cancer strategy will be specific to England, we believe this work in particular must include the devolved nations. While the approval of medicines is devolved to the individual nations, pricing of drugs is a reserved issue for the UK Government. A new system of drug access will need to incorporate some changes to the way that drugs are priced. In addition, while NICE is specific to England, decisions taken by NICE are usually followed by the NHS in both Wales and Northern Ireland. The UK Government risks a postcode lottery between the four nations of the UK unless the devolved Governments are involved in the creation of a new system for the pricing of and access to new treatments.
The Cancer Taskforce has published a Statement of Intent outlining the challenges that the new strategy will have to address and outcomes that it will be aiming to achieve. The cancer strategy will be published in summer 2015 and we will be working to ensure that the issues vital to people affected by breast cancer are included in the strategy.