National cancer plan: progress report - August 2022

Cancer Plan Progress Updates: Patient and Family Support

Actions for Personalised Care

Actions 1 & 2 – Transforming Cancer Care programme

Commitment: The pandemic has impacted the roll out of our partnership with Macmillan Cancer Support, Transforming Cancer Care (TCC) but it will carry on. We are investing up to £6.75 million in 2020/21- 22/23 and will continue to invest in the programme throughout the period of the national plan. This partnership will make Scotland the first country in the UK where all cancer patients will have access to a key support worker to receive dedicated financial, practical and emotional support.

COVID-19 has had an impact on service and patient experience, therefore we will consider with Macmillan how the TCC programme can innovate and adapt to reflect these changes, and ultimately best support patients along their cancer journey. We will work in collaboration with clinical colleagues, like primary care and allied health professionals, to identify best innovative practice.

Progress: The Scottish Government will have invested £6.75 million by March 2023 in rolling out the partnership with Macmillan Cancer Support to provide patients with access to a key support worker, as part of the ‘Improving the Cancer Journey’ (ICJ) model. As part of this partnership to transform cancer care, Macmillan Cancer Support are delivering a community-based service to improve the cancer journey for patients. Each ICJ service, via Public Health Scotland, sends a letter to every person newly diagnosed with cancer in order to invite them to make contact with the service.

The ICJ model provides structured individualised assessment and care from a dedicated key support worker, sometimes known as a link officer. This support worker conducts a Holistic Needs Assessment to talk about a person’s physical, emotional, family, practical, lifestyle and spiritual needs. Based on their identified needs or concerns, the support worker will provide information and signpost or refer the person to relevant services. Providing this type of support in the community helps cancer care teams in hospitals focus on the provision of personalised medical care and support.

26 of 31 Health and Social Care Partnerships have agreed to the ‘Improving the Cancer Journey’ model

The roll out of the ICJ model has experienced some delays due to the impact of the pandemic. By the end of 2021, agreements were in place across 26 of the 31 Health and Social Care Partnership (HSCP) areas or 12 of the 14 health board geographies. Of the 26 HSCPs: 12 services are operational, scoping has commenced in 6 other areas, and the process for recruiting the project leads to cover 8 areas has been initiated. Discussions are being taken forward to establish ICJ developments in 5 further areas during 2022, which will provide national coverage for the model.

Figure 5 below shows the number of Holistic Needs Assessments conducted in Scotland over the last five years. There has been a steady year-on-year increase in the number of assessments completed. In the last two years, 8825 assessments have been completed (2020 Q2 - 2022 Q1). There are around 4,000 new service users seen through current services; this is expected to rise to 17,000 in the next 2-3 years. During 2022, as the immediate impact of the pandemic begins to reduce, we expect to see increased impact of the ICJ model across the areas where agreements are in place. This figure is provided by Macmillan Cancer Support; they can be contacted through Macmillan press enquiries.

From the completion of Holistic Needs Assessments, concerns about money and finances have emerged as having a large impact on people when they are diagnosed with cancer. With approximately 43% of those accessing the service being of working age, the impact of cancer can be significant on household incomes, while people are going through treatment and afterwards.

All of the ICJ services establish close working relationships with their local welfare rights services to ensure service users have speedy access to this support. Services have been able to secure on average £2,000-£2,500 of additional income when money and finances have been raised as an area of concern.

Improving the cancer journey – Stomach Cancer

Jane’s story, about living with stomach cancer, highlights the benefits of the holistic approach as taken by the Dundee Macmillan ICJ Team. This included referral to support from a befriender, psychologist and dietician to improve her social, mental and physical health. Access this short YouTube video to find out more about the benefits of this support.

Improving the cancer journey – Prostate Cancer

Bill, who is living with prostate cancer, talks about feeling reassured by being able to talk about his concerns, including for his partner, with the Dundee Macmillan ICJ Team. Speaking with other people who have prostate cancer helped Bill to feel less alone. Being referred to the Macmillan Welfare Rights Team helped Bill to apply for benefits that he did not know about previously. Watch the YouTube video about his experiences.

Flagship Action

Action 3 – A Single Point of Contact: dedicated person-centred support through the cancer pathway

Commitment: We will develop a framework identifying best practice which can be adapted across Health Boards. We will invest up to £3.55 million to test and fund the introduction of a single point of contact resource to support cancer patients so they:

• Have a single point of contact for discussing questions or anxieties related to their clinical care from the point of referral,
• Receive timely and accurate advice on their appointments, tests and results,
• Have the chance to discuss what non-clinical support may be available for them and their family, following a cancer diagnosis,
• Understand their treatment plan and expected timelines for treatment delivery,
• Be supported and reassured where they had a suspicion of cancer but did not receive a cancer diagnosis,
• After discharge, be provided with advice on self-management and available services.

Progress: Twelve pilot sites have been funded with the award totalling just over £2 million. Due to a range of factors, including pressures on workforce while the NHS has been on emergency footing, the programme has experienced delays. However, all 12 pilot projects are in set-up or early implementation phases. A skeleton framework for implementation of a single point of contact has been designed to inform the pilots. All projects are due to launch by the end of 2022, with new staff recruited to support delivery. The scale and scope of each pilot project varies by site, but all are focused on better communication and delivering person-centred care as per the programme aims.

A forum has been convened and meets regularly to aid delivery and share learning. A set of questions to capture patient experience has been agreed across sites. Other measures are being developed to evaluate patient and service outcomes.

A framework for national adoption will be developed from the pilot work, based on identified learning and reported outcomes. The impact of the pilot programmes will not be fully known by March 2023. However, evaluation is central to each project and will be reported as soon as findings are available.

West of Scotland Cancer Area Network (WoSCAN) Regional Prostate Project

A dedicated support worker is being introduced within each West of Scotland Board (Ayrshire & Arran, Forth Valley, Lanarkshire and Greater Glasgow & Clyde) to enable and support patient-initiated review pathways for prostate cancer follow-up. This single point of contact will enable those treated for prostate cancer to communicate with their healthcare team through their method of treatment and improve access to blood results used to monitor cancer outcomes.

NHS Fife Single Point of Contact Hub

A single point of contact hub is being created for patients referred with an urgent suspicion of cancer or diagnosed with cancer. This will be achieved by enhancing the Central Referral Unit Team and creating a patient digital hub (telephone and/or email). The work aims to ensure timely access for all appointments, improve information provision and signposting to clinical advice and/or support services.

Action 4 – Scottish Cancer Patient Experience Survey

Commitment: With Macmillan Cancer Support, we will develop and deliver the third Scottish Cancer Patient Experience Survey, benefitting from benchmarking against previous surveys to further understand COVID-19 impacts on cancer patients.

Progress: Work is continuing to deliver the next iteration of the Scottish Cancer Patient Experience Survey. The latest iteration is being developed with Macmillan Cancer Support and other key stakeholders. Data will come from a census of patients with a confirmed diagnosis of cancer who had an inpatient stay related to cancer. Experiences will reflect the early effects of the pandemic on cancer services, although not recent initiatives.

In addition to the Cancer Patient Experience Survey, and in recognition of its limitations, the Scottish Government has established a framework for change. The framework aims to put the views and experiences of those affected by cancer at the heart of all decisions. As a result, a number of other engagement exercises have taken place over the past year, with more planned. In addition, the Scottish Government utilises Care Opinion as a source of experience, regularly reading about cancer care in Scotland and using these stories as a learning opportunity.

Actions for Guidance and Information

Action 5 – Develop guidance on outpatient visiting

Commitment: We will consult and develop outpatient visiting guidance, specifically for cancer patients, while COVID-19 continues to pose a risk within Scotland. This guidance will be published by the end of March 2021.

Progress: Published in March 2021, Outpatient Guidance for People on the Cancer Pathway provided information on how patients could be supported to attend face-to-face and remote outpatient appointments. This guidance was developed collaboratively with clinicians and third sector organisations. The guidance responded to the immediate challenges presented by the pandemic. As we recover, restrictions ease, and visitation increases, this guidance has evolved accordingly. There is now robust local practice that ensures cancer patients are supported during outpatient appointments.

Action 6 – Test patients for COVID-19 where clinically appropriate

Commitment: Patients will be tested for COVID-19, where deemed clinically appropriate, to help in minimising spread and risk of transmission to other patients and health professionals. We will continue to monitor the prevalence of COVID-19 in

Scotland to assess what approach to testing is most appropriate.

Progress: Testing patients for COVID-19 continues to be discussed at a national level, however it has become increasingly less frequent. Feedback on how testing impacted cancer patients was shared with Scottish Government officials responsible for testing policy to inform decision-making. In turn, Scottish Government officials shared relevant updates to keep cancer services informed of changes in testing policy. NHS Boards now have robust local policies on testing that continue to be implemented. This area will continue to be monitored and policies may change dependent on the level of risk presented by COVID-19.

Action 7 – Update information on cancer services with the Scottish Cancer Coalition

Commitment: We will continue to work with the Scottish Cancer Coalition to provide consistent, high quality information about individual cancer types, treatment, and various support services. We will continue to support the wider provision of patient information and support, through NHS Inform and local champions.

Progress: We have worked collaboratively with the Coalition to develop a patient information leaflet which we reviewed regularly to ensure it remained relevant and up to date with changing restrictions. The leaflet was distributed widely to cancer service managers and clinicians to provide to patients. Additionally, the Coalition joined the National Cancer Recovery Group in 2021 to support live information sharing and encourage input into national conversations around cancer services from the third sector.

Action 8 – Provide tailored information for individuals that are at increased risk of poor outcomes from COVID-19

Commitment: We will provide patients with information on their individual risk from COVID-19, alongside information on the changing levels of infection in their community, so that they can make informed choices.

Progress: There has been specific messaging for those who are clinically high risk around shielding and vaccine accessibility, including patients with cancer. The Scottish Cancer Coalition have been informed of changes to targeted information for high-risk individuals. This action will continue to be monitored and acted upon where appropriate.