Cancer Strategy for England
When the UK Government announced in December 2014 that it had set up an independent taskforce to develop a new five year cancer strategy, we used the opportunity to make sure that it would meet the needs of men living with and beyond prostate cancer. We invited members of the taskforce and its secretariat to meet with prostate cancer specialists, and men with prostate cancer, including those who had used the new and innovative models of cancer support and care that we’d commissioned and supported with funding from the Movember Foundation.
As a result of this work England’s new cancer strategy includes the first ever patient experience and quality of life considerations that will be asking patients how they feel about the services and support they receive. It’s also taken a comprehensive approach to post-treatment support, with a chapter dedicated to living with and beyond cancer.
Furthermore, in the Westminster Government's November Spending Review and Autumn Statement 2015, there was a commitment to implement the recommendations from the independent taskforce. This has included £300 million per year, over five years, for new diagnostic equipment, additional staff, and rolling out post-cancer support in the form of recovery packs.
In May 2016, NHS England published its implementation plan, ‘Achieving World-Class Cancer Outcomes: Taking the strategy forward’ which details how it will make the ambitions on the independent cancer strategy a reality and deliver ‘world-class’ cancer services. The plan is welcomed and offers us great opportunities to push through the key changes we want to see for men.
So what does the plan mean for men with prostate cancer? On the whole, it looks positive and an ambitious step forward.
We know from men that a key factor in their experience of prostate cancer is access to a Clinical Nurse Specialist (CNS), or key worker. Evidence shows that access to a CNS or key worker leads to better patient experiences of care. The cancer strategy has pledged to ensure that more patients have such access, and we will be launching a campaign on this issue UK-wide in 2016 to ensure that there is enough CNS or key workers who specialise in urology to make this a reality for men with prostate cancer.
The introduction of regional Cancer Alliances from September 2016 offers the opportunity for a partnership between patients, treatment and services’ funders and providers, local authorities, and clinical leaders. These Cancer Alliances can use local data on cancer outcomes to identify where they need to make improvements to the cancer pathway. We can monitor this too, making sure that we can target our resources on the places where men are not getting the treatment and support services they need.
Now that NHS England has made guidance available to make sure local areas are providing services that support people living with and beyond cancer, we can use this as the backbone of our fight for services needed to support men with treatment-induced erectile dysfunction.
Patient experience will be a key factor in the implementation of the strategy, taking into account the results of the Cancer Patient Experience Survey, as well as offering further insight into different communities. By March 2017, NHS England will agree an approach to gathering insight and feedback from people with cancer from black, minority and ethnic communities – this will be used to inform our work as part of our ‘Men at Risk’ programme, which includes black men. Black men are more likely to get prostate cancer than other men, with 1 in 4 getting prostate cancer in their lifetime, in comparison to 1 in 8 men in the UK overall.
Unfortunately, the focus on early diagnosis doesn’t currently take into consideration cancers that can be symptomless – which prostate cancer often is – but rather has a focus on those cancers which currently have a screening programme in place. But it does make additional resources available to increase diagnostic capacity – resources we will want to make sure are available when medical research produces ways to diagnose men better – such as our own risk assessment tool.
We look forward to working with NHS England, Public Health England and others to make sure that men with prostate cancer get access to the best possible diagnosis and treatment for them, no matter where they live.
Watch this space for updates.
Scottish Cancer Plan
The Scottish Cancer Plan - 'Beating Cancer: Ambition and Action' - was launched in March 2016, to make improvements in key areas such as diagnosis, treatment and support for people affected by cancer over the next decade.
The plan has been in development over the last two years, following our work alongside the Scottish Cancer Coalition in March 2014 to secure the promise of a cancer plan. The plan documents the achievements and learnings made since the publication of the Better Cancer Care plan in 2008 (and its 2010 update) as well as setting out a strategy for cancer care in Scotland going forward.
Cancer Delivery Plan for Wales
On 15 November, the Welsh Government published its 2016-2020 Cancer Delivery Plan (CDP). The Plan sets out the Welsh Government’s vision for the kind of cancer care and support services that it wants to deliver for patients. At Prostate Cancer UK we welcome the ambition for better cancer care in Wales, and we want to ensure that across all areas of the plan, men with prostate cancer will benefit.
Focus of the new delivery plan
The new CDP updates the Government’s previous plan, which ran up to 2016. As a re-fresh of the old document there is lots of continuity. This can be a strength, however we also want to make sure that the government will remain ambitious in the improvements it is seeking for cancer services. We would like to see it working with colleagues in the NHS and stakeholders such as Prostate Cancer UK to do this.
The new CDP is structured across five chapters: preventing cancer; detecting cancer earlier; delivering fast, effective treatment and care; meeting the needs of people affected by cancer, and; caring for people with cancer at the end of life. As top level themes, these chapters cover the areas which we would hope to see in an effort to improve services and include important specific commitments that should help men in Wales, such as meeting treatment time targets and ensuring equity of access and delivery of service quality across Wales.
However, as always, there is more to be done. One of our core priorities at Prostate Cancer UK is to bring about earlier diagnosis of clinically significant prostate cancer and we will need to work closely with the Welsh Government to ensure that the CDP will help to achieve this as well.
Making sure the CDP improves prostate cancer diagnosis
Prostate cancer is the most common cancer in men, and accounts for one in four male cancer cases in the UK; however at an individual level some men are at much greater risk of prostate cancer than others. A man has an 8% lifetime risk of prostate cancer if he has no family history of the disease, compared to a 25% lifetime risk if a man’s brother was diagnosed with prostate cancer under 60. Both age and Afro-Caribbean ethnicity also contribute to higher risk of prostate cancer.
Because prostate cancer is often without symptoms at the early stage, the main way to drive earlier diagnosis is to improve awareness of the risk factors like these. However, the main focus of the detecting cancer earlier section of the CDP is on improving symptom awareness. While of course this is important as well, we will be working to ensure that the Welsh Government takes a holistic approach to detecting cancer earlier, focused on awareness of risk factors as well as symptoms, so everyone can benefit from the drive for improvement.
Another ambition of the plan is to ensure high quality services are delivered across Wales - tackling inequality in outcomes. We think that use of Prostate Cancer UK’s Clinical Consensus on PSA testing could be another valuable tool for the Welsh Government to consider using. This helps GPs to identify those men at higher risk of prostate cancer. Using these approaches in combination, we hope both the public and GPs will be better informed about how to improve earlier diagnosis of clinically significant prostate cancer.
Working with the Welsh Government to deliver better outcomes
The CDP has only just been released, and as it stands, is a high-level plan showing how the Welsh Government wants to improve cancer services. With this in mind, we believe that there is opportunity to build on positive conversations with the Welsh Government as the CDP was developed to ensure improvements take place in prostate cancer. To help bring this about, Prostate Cancer UK will continue draw these issues to the attention of health leaders in Wales to 2020 and beyond.
This is only one area among many where we are working to drive improvements in prostate cancer care and support across the UK. Check out our campaign pages to see the other work that we are doing.
Northern Ireland is currently the only nation in the UK that doesn't have a comprehensive cancer plan or strategy. In Northern Ireland, there is a Cancer Services Framework, which is currently under review.
We will keep you updated on Northern Ireland as things progress - watch this space.
The Cancer Registry
A new report looking at ways to increase awareness of the Cancer Registry in England has been released in November 2016. The report from Macmillan Cancer Support and Cancer Research UK considers the best way to inform patients about the Cancer Registry, and how the data in it is used. This includes, for example, data about the type of cancer and treatment they have. The report also explores ways to increase knowledge of the Cancer Registry among healthcare professionals and the general public.
What the Cancer Registry does
The Cancer Registry is a vital source of information, kept by the NHS in each nation, and is the central record of information about people with cancer. Information is automatically included in the Registry when a person is either suspected of having cancer or is diagnosed with cancer across the UK. Data released from the registry is anonymised and aggregated (for example, statistics on the number of people diagnosed each year), and any data which relates specifically to an individual can only be released with their specific consent. However individuals can opt-out of their data being included if they prefer to.
The data in the Registry is critical for the NHS – and charities like Prostate Cancer UK – to understand what’s happening across the UK: how many people are diagnosed with cancer, what types of cancer are being diagnosed and to what extent, what treatments cancer patients receive and what survival outcomes cancer patients across the UK experience. Most importantly, the data reveals whether survival from cancer is getting better or worse and it can be compared to survival rates across Europe. All of this data is essential in identifying what’s needed to improve cancer services, and where.
Despite its importance, knowledge of the Cancer Registry is very low: three in four people with cancer surveyed for the report said that they had never heard of the Cancer Registry. This is in contrast to the very high number of people (over 80%) who felt it was important for people affected by cancer to be informed of the Registry. There is also a need to improve awareness among healthcare professionals, ensuring they are equipped to talk to people affected by cancer, about the importance of this data and the ways in which it can to transform cancer diagnosis and treatment across the NHS.
At Prostate Cancer UK, we use this data as the case to call for improvements to cancer services. The following provides an example of what we use and how.
Using patient reported outcome measures (PROMs) to know what treatment planning improvements are needed for men with prostate cancer and where
Life after prostate cancer diagnosis (LAPCD) is a patient reported outcome measures (PROMs) project funded by the Movember Foundation. It is designed to find out which outcomes of prostate cancer diagnosis and treatment really matter to men across the UK (for example, how it may have affected their physical, emotional, and mental health). It is conducted through a UK-wide survey, aiming to reach 100,000 men over three years.
The data from this survey will be published nationally and therefore individual trust results will be available, but data will remain anonymous. The information generated from this study will highlight areas of treatment and experiences that show patterns of poor care. This will subsequently allow work towards better treatment planning and also provides improved evidence for future research calls.
The role of the Cancer Registry is vital for the project to work towards the goal of improving men’s lives, by identifying patients eligible for the study, and subsequently inviting them to take part to hear their views. The research can help to understand what men think about the treatments that they received and their effectiveness, how their quality of life changes as they live with prostate cancer and the consequences of treatment over time, and how these health outcomes compare to a wider group of men without prostate cancer.
More examples of how data from the registry is used are in the report.
What we think
For both the NHS and charities like Prostate Cancer UK, information on people’s experiences as patients is absolutely essential to improve services and undertake further research. However, we think that it is critical to improve people’s awareness of the Cancer Registry, and how their data is used. It is therefore essential to guarantee that data is handled securely, to appropriate standards, and that privacy is respected.
The UK has some of the best data in the world. This is in part due to the Cancer Registry operating on an ‘opt-out’ basis. This means that data is included unless an individual specifically chooses for their data not to be included. The report highlighted that 85% of people affected by cancer were supportive of its use for research and service planning. We are supportive of this model continuing. However, we must take our responsibility seriously to inform and reassure people about its use.
As such we support the recommendations in the report which call for:
- Hospitals to be made accountable for informing their patients of the Cancer Registry, and that this should be communicated to people affected by cancer in different ways to ensure it is accessible.
- Alongside this, healthcare staff need to be supported to answer questions about the Cancer Registry. Further information for professionals can be found here.
- Finally, having a measurable improvement in the public’s awareness of the Cancer Registry can only be positive for the future.
This report has been produced alongside the recent report by the National Data Guardian (NDG) into use of data in the health system. The NDG review focused mainly on the quality of data security, alongside people’s understanding of how their data is used in the health system. These are essential issues and critical to making sure that individuals have confidence in how their data is used. They are the basis for people to continue to share their information and to enable our health service know where it must improve.
What men can do
We are playing our part to improve awareness of the Cancer Registry, and you can find further information on the Cancer Registry website. We will also be including a link on our health information pages.