Actions and Outcomes
Patient and Family Support
Non-clinical support for patients and their families can have a positive impact in many different ways throughout a patient’s cancer journey, from initial referral to well after final treatment. In this plan we will promote various actions to provide this vital support, much of it delivered by third sector organisations. We will continue to engage with our key third sector partners, such as the Scottish Cancer Coalition and the Less Survivable Cancers Taskforce, utilising their insight and expertise in patient experience and specific cancers.
Survey results from these partners have highlighted the impact the pandemic has had on some individuals’ mental health. This has been further exacerbated by limited contact with family and friends during lockdown. We are committed to helping individuals improve their mental health and wellbeing through new initiatives, such as the recently launched “Clear Your Head” campaign.
Scottish Cancer Patient Experience Survey (SCPES) data has shown people with cancer have not always received as much information as they would like on issues such as financial help, care at home and support available from the third sector. COVID-19 has impacted access to information services and resources for both patients and their families. We are committed to ensuring patients receive appropriate information at all points in their journey.
Improving patient and family support will be driven through:
1. 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 recovery 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.
2. COVID-19 has had an impact on service and patient experience, therefore we will consider with Macmillan how the Transforming Cancer Care 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.
3. A single point of contact: dedicated person-centred support through the cancer pathway
“…during this period I was contacting anyone whose number I had to get my test results…If someone had explained the diagnosis/treatment process and I had a single person to speak to it would have helped greatly…”
“…After being discharged, I felt forgotten…”
- Cancer Patient stories, Care Opinion
Patient groups, third sector organisations, and survey data - including the Scottish Cancer Patient Experience Survey and Care Opinion - have all helped evidence the need for more support in this area. Patients and clinicians tell us patients would like one, easy to access, point of contact to help them navigate sometimes complex pathways; from presenting with symptoms or being screened, to being treated for cancer, and post-treatment.
While the risk of COVID-19 persists, this point of contact service will be essential in supporting a patient at all times through what may be a constantly evolving system. The delivery of this support will depend on existing services and work in conjunction with them. Clinical Nurse Specialists currently play a vital role in every cancer patient’s pathway, providing support from the point of diagnosis. This additional resource has the potential to offer support throughout the pathway and in doing so will support vital Clinical Nurse Specialists, by helping release their time.
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 will:
- 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
4. 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.
Guidance and Information
5. Patient visiting and accompanying to appointments have been significantly impacted by COVID-19. In line with guidance at the time of publication, cancer inpatients along with all inpatients, are allowed one designated visitor. 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.
6. 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.
7. Patients have valued receiving information that is relevant to them throughout the pandemic. 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.
8. Many cancer patients are at a far higher risk of severe outcomes from COVID-19. As we continue to learn about the virus, and in particular about the factors that affect the risk to particular individuals, we will be able to provide information that enables individuals to make informed choices about managing COVID-19 risks. 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.
The graphic shows a timeline, displaying the end of each quarter and running from December 2020 to March 2023, and the expected completion times for action points 1 to 8, as described above. It shows that action points 1, 2, 4, 6, 7 and 8 are expected to be completed by March 2023. Action point 3 is shown to have three stages, with the test of change agreed by March 2021, the rollout of pilots and test by March 2022, and the evaluation, adapting and National Framework agreed for continued roll out until March 2023. Finally, action point 5 is showing the publishing of guidance to be by the end of March 2021.