Last updated: 19th June 2023
This new cancer strategy represents a chance to improve on previous cancer plans and ensure that the issues facing blood cancer patients are adequately considered.
“We are pleased to see that the Scottish Government has published their ten-year Cancer Strategy. We are encouraged that the strategy recognises the specific difficulty of tracking the progress and improvements in diagnosing blood cancers earlier, with the need to use different measurements like emergency presentations as a measurement for cancers that cannot be staged. However, the strategy fails to recognise other areas where the experience of leukaemia patients differs from those with solid tumours, particularly when it comes to addressing the unique needs of patients on Watch and Wait” – Zack Pemberton-Whiteley, Chief Executive at Leukaemia Care.
How was Leukaemia Care involved in the drafting of this strategy?
The Scottish Government consulted with Leukaemia Care and other members of the Scottish Cancer Coalition, which brings together a number of different cancer charities in Scotland. We reviewed draft versions of the strategy and raised any concerns we had.
We highlighted some of the key challenges we have been campaigning in our Left to #WatchWaitWorry and #SpotLeukaemia campaigns. These include:
- Ensuring more patients are diagnosed earlier, as earlier diagnosis is linked to better survival for patients.
- Better recognition of the need to support people who are on active monitoring or Watch and Wait. Current planning for cancer care focuses heavily on those immediately pre treatment, during treatment and immediately after, leaving many leukaemia patients without support.
- Better access to clinical nurse specialists (CNSs) for all leukaemia patients, as leukaemia patients were less likely to report access to this support than those with solid tumour cancers.
To create our response, we used evidence from our Living with Leukaemia survey, our patient advisory panels and our campaigns, all of which help give us a picture of what it’s like to live with a diagnosis of a leukaemia, an MPN or MDS.
Has the strategy acknowledged and addressed any blood cancer issues?
We are pleased to see that there have been improvements in the latest Scottish cancer strategy, particularly when it comes to diagnosing blood cancers earlier.
Leukaemia, MPNs, and MDS cannot be staged like tumorous cancers. The non-specific nature of blood cancer symptoms and the relative rarity of leukaemia can make it difficult for both patients and healthcare professionals to recognise the potential cause as leukaemia. This can potentially lead to a patient presenting as an emergency instead – e.g. in Accident and Emergency – as their symptoms become more severe. Being diagnosed via A&E has been linked to reduced survival.
The strategy recognises that not all cancers can be conventionally staged, including leukaemia. This document acknowledges that emergency presentation data is needed in order to track progress and improvements in the earlier diagnosis of leukaemia. We are pleased to see this particular concern that we frequently highlight in our #SpotLeukaemia campaign has been acknowledged.
We are also encouraged to see a commitment in the Scottish Cancer Strategy to routinely publish emergency presentation data through Public Health Scotland. This data will be vital in reducing the early diagnosis inequality gap between stageable and non-stageable cancers, and improving survival rates.
We also called on the Scottish Government to raise awareness of the non-specific symptoms of leukaemia, and to encourage people to get their symptoms checked. We are pleased to see this commitment included in Scotland’s cancer strategy, with a focus in also supporting primary care professionals in referring patients presenting with non-specific symptoms.
How can the strategy be improved?
There is still work to be done, particular in relation to our Left to #WatchWaitWorry campaign and ensuring adequate support for chronic lymphocytic (CLL) patients on Watch and Wait.
The Cancer Strategy for Scotland 2023-33 has failed to mention or make any reference to ‘active monitoring’ and ‘Watch and Wait’, or the important role clinical nurse specialists (CNSs) play in supporting CLL patients. This is particularly concerning as there are approximately 13,000 people living in the UK with CLL on watch and wait. Additionally, Watch and Wait is not just an issue for CLL patients, but also for other blood cancer types, as well as prostate cancer.
Overall, workforce and the pressure that a reducing number of staff puts on the NHS in Scotland remains a concern for us. The Scottish Government must take urgent action on this, to be able to achieve what they have set out in this cancer strategy in growing the number of NHS workforce training places and ensuring that all professionals are doing the work they are best placed to do.
The Scottish Government has committed to completing a workforce review of key professions in Scotland’s cancer services by 2026. We will continue to advocate for the Scottish Government to train more clinical nurse specialists, who provide invaluable support for leukaemia patients.
How will Leukaemia Care continue to encourage the Scottish Government to address any shortcomings in the strategy?
The cancer strategy is broken up into 3-year stages, known as Action Plans. Each stage focuses on specific cancer types and issues. The first 2023-26 Action Plan focuses on cancers that are the largest burden and have poorer survival, such as lung, liver, and pancreatic cancer.
Leukaemia Care will continue to work with the Scottish Government to ensure that the issues facing all blood cancer patients to be addressed in future Action Plans.
Are there cancer plans for England, Wales, and Northern Ireland?
The UK Government is currently drafting a Major Conditions Strategy for England. We will be consulting with the UK Government in the drafting stages of this strategy to ensure that England’s strategy reflects the improvements seen in other UK nations’ cancer strategies when it comes to considering blood cancer issues.
Wales recently published their Cancer Improvement plan 2023-26 which can be read here. We are pleased that the Welsh cancer plan recognises the need for all cancer patients to have access to a key worker, so we will be campaigning for all leukaemia patients to have access to a CNS.
Northern Ireland have also recently published their Cancer Strategy for Northern Ireland 2022-32 which can be read here. This is currently the only strategy amongst the four UK nations to mention the needs of CLL patients on active monitoring and the important role CNSs have in providing care to this group of patients. We welcome this and hope other UK nations follow suit in acknowledging the needs of patients on active monitoring.