Dr Anthony Cunliffe shares 10 top tips for primary care on the provision of personalised care for people with cancer
Read this article to learn more about:
- the importance of tailoring care to patients’ needs
- how to help people with cancer to self-manage and access support
- the role of GPs, practice nurses, and social prescribers in personalised care for people with cancer.
Primary care teams know that a ‘one-size-fits-all’ approach to health care cannot meet the increasingly complex needs and expectations of the patients seen in everyday practice. Personalised care places the focus not only on what is the matter with the patient, but also on what matters most to them. It aims to align with their individual strengths and needs, and considers both personal and community assets.1
Personalised care is delivered through six key components:1
- patient choice
- shared decision-making
- patient activation and supported self-management
- social prescribing and community-based support
- personalised care and support planning
- personal health budgets.
The Royal College of General Practitioners (RCGP) defines personalised care and support planning as: ‘A powerful way of creating an environment which helps clinicians to support self-management by patients of their own long-term condition.’2
In primary care, healthcare professionals regularly carry out multiple elements of personalised care and support planning. However, considering these in a structured way and ensuring that there are suitable tools and information to support both the professional and the patient can facilitate a more effective process.
1. Support patients to develop a personalised care plan
More people than ever before are living longer after a cancer diagnosis with an average 10-year survival of 50% or more for many common cancers.3 This means that for many people, cancer is a long-term condition. More of the follow up for people after treatment for cancer is moving to a ‘self-managed’ or ‘open-access’ model, including some primary care-led models. Therefore, primary care teams need to be equipped with the education and resources to support people with cancer in the community. Cancer is not a single disease, so individuals’ needs may vary significantly depending on the type of cancer they have, at what stage they were diagnosed, and what treatment they have received.4
All people with cancer should have the opportunity to develop a personalised care plan (PCP) based on their specific needs. A major element of the PCP is the opportunity to have a tailored conversation about what matters to them with a professional who is able to help them translate those needs into actions. The conversation should cover what assets are available not only through healthcare services, but also in the person’s social and family circle, and the local community.
Holistic needs assessment
Everyone diagnosed with cancer should receive a holistic needs assessment (HNA), which is a simple questionnaire that can be completed electronically and identifies the issues most important to the patient at that time. The HNA should then inform the development of a support and care plan with a professional equipped to help the person agree ways in which their main needs can be addressed. People with cancer should receive an HNA at key stages of their disease pathway. Most care plans are completed in secondary care but there could be benefit in supporting people living with cancer to complete HNAs at home and developing the care plan in primary or community care.
A treatment summary is a document completed by the specialist or multidisciplinary team after a significant phase of a patient’s cancer treatment. It describes the treatment, potential side-effects, and signs and symptoms of recurrence. It is designed to be shared with the person with cancer and their GP, and should inform and empower both the person and their primary care team to manage their care in the future.
2. Conduct a cancer care review
The cancer care review (CCR) is a primary care intervention offered to people within 6 months of being diagnosed with cancer. The National Cancer Patient Experience Survey 2018 found that, on average, only 59% of respondents thought that their primary care team supported them through their treatment.5
Primary care professionals may feel that a CCR could potentially add to the appointment burden faced by patients after diagnosis and during treatment. However, the advice is that a CCR should be a dedicated appointment and inviting the patient to attend sends a powerful message that primary care teams can support people through their cancer pathway from diagnosis.6 A 2012 Macmillan Cancer Support survey found that the majority of patients were positive about the review and appreciated their GP contacting them.7 It can be helpful when inviting a patient to a CCR to give them the option of bringing a close friend or family member with them for support.
A patient may be unsure about the purpose of a CCR and whether to raise particular issues. Several days before the appointment, consider sending the patient a letter explaining the purpose of the appointment with some examples of topics that they might find useful to discuss, for example, sexual issues or finances. You could consider using the HNA to help the patient identify what they want to discuss.6
Current or planned treatments should be discussed and recorded in the notes, ensuring the correct coding is used. This is a useful opportunity to check the patient’s understanding of the purpose of any treatment and to give them the chance to ask questions.6
Alongside any list from the patient, using a structured template to guide a CCR can help facilitate a robust review and act as an aide-memoire for the primary care professional to ensure all important issues are considered.6 A template also has the benefit of being able to code diagnoses and treatments. Macmillan Cancer Support has developed templates that are integrated with primary care IT systems and cover multiple issues including physical, emotional, and social consequences of cancer and its treatment. The templates also provide links to easily accessible information on the support available to patients.
3. Train practice nurses to undertake cancer care reviews
Generally, GPs will undertake CCRs in primary care but evidence shows there is variability and inconsistency in the way they are carried out.8 It is common for practice nurses to conduct long-term condition reviews and many of the skills they use to manage patients with one long-term condition are transferable to other long-term conditions.9 An evaluation by NHS Lanarkshire as part of the Macmillan Transforming Care After Treatment programme showed that training practice nurses to deliver CCRs was both acceptable and feasible and led to some shift of workload from GPs as well as improvements in satisfaction from people receiving the CCRs.10 An essential element was appropriate training for practice nurses. Macmillan Cancer Support has developed training accessible to practice nurses with an interest in learning and developing these skills; further information can be found on the Macmillan Cancer Support website.
4. Support through social prescribing
Social prescribing considers the multiple determinants contributing to a person’s health including social, financial, and environmental factors.
Social prescribers work with people to identify needs that are having a negative impact on their quality of life and to agree plans through direct practical support or, more often, signposting to other professionals or services who are well placed to meet these needs.
The aim of social prescribing models is to help people live their lives as well as possible, with a focus on supporting them to take control of and to improve their health, wellbeing, and social welfare. Individual needs vary, which means that some people may only need limited contact with the social prescriber, while for others more regular contact and review/follow up may be necessary.
Supporting self-management and the development of coping skills for people with long-term conditions is an essential part of what social prescribing can achieve. As well as benefiting the individual, there is evidence that supporting a person through social prescribing can reduce GP attendances by an average of 28% and emergency department (ED) attendances by an average of 24%.11
Social prescribers, as part of multidisciplinary primary care teams, can support people with cancer. For further information, see Macmillan Cancer Support’s 10 top tips for social prescribing.12
5. Identify the physical effects of cancer and its treatment
Although people are living longer after treatment for cancer, more than one in four of those who have been through cancer treatment will face poor long-term health and disability.13 Common long-term consequences of cancer and its treatment include chronic fatigue, sexual difficulties, pain, urinary and gastrointestinal problems, and lymphoedema. Certain cancer treatments can also increase the risk of other serious long-term conditions such as heart disease, osteoporosis, or a second cancer.13
Primary care professionals cannot be expected to have extensive knowledge about all the possible physical effects and how to manage them, but can help people identify the problem and the fact that it may be related to their cancer or the treatment they received. It may be that, with the right support and information, primary care professionals can help manage the problem without needing to refer back to secondary care.
Macmillan Cancer Support has worked with the RCGP to develop a toolkit to help primary care professionals understand what they can do to help people experiencing the consequences of cancer but also when to involve secondary care.14
6. Provide psychosocial care
As well as the significant physical effects of cancer and its treatment, the diagnosis can lead to psychosocial issues that are serious, long-standing, and broad. These issues affect not only the person living with the disease, but also their close network.15 Evidence from Macmillan Cancer Support shows that 44% of people living with cancer have experienced distressing emotional issues.16 Research has found that depression affects 20%, and anxiety 10%, of people living with cancer.17
Psychosocial support can reduce morbidity and improve quality of life for people with cancer and their families; along with specialist services, primary care has a role in providing continuous, coordinated, and comprehensive care, including psychosocial care.18
Different levels of emotional support are needed by different people and it may be that primary care professionals (including GPs, practice nurses, and social prescribers) with the appropriate training, are best placed to provide this support. However, many people may need more intensive support; therefore, be aware of local services that may be able to provide such support and the referral processes, for example, Improving Access to Psychological Therapies (IAPT)19 or a psycho-oncology service.
7. Direct patients to financial advice services
Work and finances may be among some people’s greatest concerns when they are diagnosed with cancer. Many report that they do not receive the help or information they need to manage the financial effect of a diagnosis. Around 80% of people with cancer are on average £570 a month worse off because of their diagnosis.20
Primary care professionals may be unable to provide detailed financial advice, but encouraging people to discuss money, and signposting them to local services that can support them to claim the benefits to which they are entitled, may have a significant positive effect. All people with cancer can apply for a means-tested Macmillan Cancer Support grant, which may help with essential travel costs or fuel bills.20
It is estimated that more than 890,000 people of working age are living with cancer in the UK21 and around 700,000 people in work are caring for someone with cancer.22 Of those employed when they were diagnosed, 87% said it was important for them to continue working, with many saying it helped give them a sense of normality, stay positive, and was financially necessary.23 Research by Macmillan Cancer Support has also found that 55% people who were employed when they were diagnosed did not know where to go for information and support to help them make decisions about staying in or returning to work.21
Primary care teams are in a good position to help people with cancer to understand the potential effect of the disease on their ability to work so that they can have effective conversations with employers. GPs are often asked to write fit notes and this is an opportunity to have the discussion, as is the CCR. Signposting patients to further information and support, including Macmillan’s Work Support Service on the Macmillan Support Line and Macmillan’s online information and resources, can be a useful part of that discussion.24
8. Advise on the benefits of physical activity
Lifestyle advice is an important part of supporting people with cancer from diagnosis through their treatment and beyond. Outcomes from cancer treatment are better the fitter the person is, and commencing exercise training while undergoing adjuvant treatment after surgery can improve physical fitness and health-related quality of life.25 People who stop smoking after a diagnosis of lung cancer have significantly better outcomes than those who continue.26
A significant evidence base shows the benefits of physical activity for patients with cancer across all stages of the pathway. Both during and after treatment, improvements were seen in physical function, fatigue, and overall wellbeing, including a reduction in anxiety and depression.27
Primary care teams can advise people on physical activity and support them with knowledge of local services or groups.
9. Consider co-morbidities
More than 70% of people with cancer in the UK have at least one other long-term condition.28 These conditions vary, with hypertension, diabetes mellitus, and coronary artery disease being among the most common.29 People with these conditions are offered regular reviews through the primary care Quality and Outcomes Framework with the aim of optimising treatment, identifying other needs, and offering lifestyle interventions. For people with cancer, long-term condition reviews may be their only opportunity to identify unmet needs. For those with cancer but no other long-term conditions, the general review structures in primary care would not flag up such opportunities.
A report by the Nuffield Trust on the use of health and social care by people with cancer found that at 15 months after diagnosis, they had 50% more contacts with primary care than expected, and 60% more ED attendances.30 Perhaps having more structured reviews in primary care as part of a personalised care approach may have a beneficial impact on patient experience and use of healthcare services.
10. Be aware of the risk of recurrence
The fear of cancer recurrence can be significant.31 The risk of cancer recurring after treatment depends on multiple factors, but this uncertainty can be difficult to live with: 7% of patients develop severe fear that can lead to intrusive thoughts and concerns triggered by unrelated symptoms.32
People with cancer should be aware of the potential signs and symptoms of recurrence but primary care professionals should also be aware of this risk and understand what to be alert to. This is difficult because of the myriad possible symptoms; with robust coding of diagnoses and treatments, and accessibility of treatment summaries that should include this information, primary care professionals can be better prepared to help with concerns when patients present.
Dr Anthony Cunliffe
Joint National Lead Macmillan GP Adviser; Macmillan GP Adviser London; Joint Clinical Chair, South East London Cancer Alliance
Implementation actions for clinical pharmacists in general practice
written by Gupinder Syan, Training and Clinical Outcomes Manager, Soar Beyond Ltd
The following implementation actions are designed to support clinical pharmacists in general practice with implementing the guidance at a practice level.
Practice pharmacists are well placed to get involved in personalised cancer care, as highlighted in the PCN DES specification. It is key for practice pharmacists to understand where best they can add value, and they should seek to agree with their clinical directors or managers which patients are within their scope (e.g. patients with polypharmacy requiring structured medication reviews as part of the CCR).
- Seek training on how to conduct a CCR and how to use an HNA to produce a PCP
- Understand the long-term effects of cancer and make use of the RCGP Macmillan toolkit
- Know your local referral pathways and how best to utilise other services in your practice or PCN e.g. social prescribers, IAPT
- Offer relevant advice to patients (e.g. on physical activity, directing to financial advice services)
- Familiarise yourself with support resources (e.g. Macmillan and local contacts)
- Consider current practice systems to ensure smooth delivery of CCRs (e.g. sending HNAs to patients before their appointment)
- Ensure your reviews are well structured and leverage your strengths:
- support with medication related queries and long-term management
- for consistency, implement the Macmillan GP IT system structured CCR templates with appropriate codes
- be aware of the risk of recurrence and check treatment summaries where possible to identify risks
- Evaluate your impact on patient care, for example by:
- reviewing the number of CCRs conducted and how much time this has saved other HCPs
- assessing awareness of the RCGP Macmillan toolkit within the practice and the impact of upskilling.
PCN=Primary Care Network; DES=directed enhanced service; CCR=cancer care review; HNA=holistic needs assessment; PCP=personalised care plan; RCGP=Royal College of General Practitioners; IAPT=Improving Access to Psychological Therapies; HCP=healthcare professional
- NHS England. Personalised care. www.england.nhs.uk/personalisedcare (accessed 5 December 2019).
- British Geriatrics Society. 8. CGA in primary care settings: care and support planning. www.bgs.org.uk/resources/8-cga-in-primary-care-settings-care-and-support-planning (accessed 5 December 2019).
- Cancer Research UK. Cancer survival for common cancers. www.cancerresearchuk.org/health-professional/cancer-statistics/survival#heading-One (accessed 5 December 2019).
- McConnell H, White R, Maher J. Three cancer groups: explaining the different complexity, intensity and longevity of broad clinical needs. London: Macmillan Cancer Support, 2015. Available at: www.macmillan.org.uk/_images/three-cancer-groups_tcm9-297577.pdf
- Quality Health. National cancer patient experience survey 2018. Chesterfield: Quality Health, 2018. Available at: www.ncpes.co.uk/reports/2018-reports/national-reports-2018
- Macmillan Cancer Support. Carrying out an effective cancer care review. London: Macmillan Cancer Support, 2007. Available at: www.macmillan.org.uk/_images/carrying-out-an-effective-ccr_tcm9-297613.pdf
- Macmillan Cancer Support. Evaluation of Macmillan’s cancer care review template. London: Macmillan Cancer Support, 2012. Available at: www.macmillan.org.uk/documents/aboutus/health_professionals/primarycare/macmillancancersupportrevisedreportfinal.pdf
- Adams E, Boulton M, Rose P et al. Views of cancer care reviews in primary care: a qualitative study. Br J Gen Pract 2011; 61 (585): e173–e182.
- Campion-Smith C, Doyle N, Henry R. Understanding the practice nurse’s role in the cancer care tapestry. Practice Nursing 2014; 25 (7): 324–328.
- Trim V. Practice nurse led cancer care reviews—evaluation report. Motherwell: NHS Lanarkshire, 2017. Available at: www.macmillan.org.uk/_images/NHS-Lanarkshire-TCAT-Evaluation-Report-2017_tcm9-343149.pdf
- Polley M, Fleming J, Anfilogoff T, Carpenter A. Making sense of social prescribing. London: University of Westminster, 2017. Available at: westminsterresearch.westminster.ac.uk/download/f3cf4b949511304f762bdec137844251031072697ae511a462eac9150d6ba8e0/1340196/Making-sense-of-social-prescribing%202017.pdf
- Macmillan Cancer Support. Primary care 10 top tips for social prescribing. London: Macmillan Cancer Support, 2019. Available at: www.macmillan.org.uk/_images/ten-tips-social-prescribing_tcm9-355361.pdf
- Macmillan Cancer Support. Cured—but at what cost? Long-term consequences of cancer and its treatment. London: Macmillan Cancer Support, 2013. Available at: www.macmillan.org.uk/documents/aboutus/newsroom/consequences_of_treatment_june2013.pdf
- Royal College of General Practitioners. Consequences of cancer toolkit. www.rcgp.org.uk/clinical-and-research/resources/toolkits/consequences-of-cancer-toolkit.aspx (accessed 5 December 2019).
- Gorman L. The psychosocial impact of cancer on the individual, family, and society. Pittsburgh: Oncology Nursing Society, 2018. Available at: www.ons.org/sites/default/files/publication_pdfs/Sample%20Chapter%200554%20PsyNsgCare2nd.pdf
- Macmillan Cancer Support. Hidden at home: the social care needs of people with cancer. London: Macmillan Cancer Support, 2015. Available at: www.macmillan.org.uk/_images/hidden-at-home-report_tcm9-300461.pdf
- Pitman A, Suleman S, Hodgkiss A. Depression and anxiety in patients with cancer. BMJ 2018; 361: k1415.
- Grassi L, Spiegel D, Riba M. Advancing psychosocial care in cancer patients [version 1; peer review; 3 approved]. F1000Research 2017; 6: 2083.
- NHS England website. Adult Improving Access to Psychological Therapies programme. www.england.nhs.uk/mental-health/adults/iapt/ (accessed 17 December 2019).
- Macmillan Cancer Support. No small change: time to act on the financial impact of cancer. London: Macmillan Cancer Support, 2017. Available at: www.macmillan.org.uk/documents/policy/money-and-cancer-policy-report.pdf
- Macmillan Cancer Support. The rich picture: people of working age with cancer. London: Macmillan Cancer Support, 2017. Available at: www.macmillan.org.uk/_images/people-of-working-age-with-cancer_tcm9-282791.pdf
- Macmillan Cancer Support. Work and cancer. be.macmillan.org.uk/be/s-363-work-and-cancer.aspx (accessed 5 December 2019).
- Smerald G, Coaker R, Bloom E, Egan L. Working through cancer—surveying experiences of cancer and work. Macmillan Cancer Support, 2018. Available at: www.macmillan.org.uk/_images/working-through-cancer_tcm9-341781.pdf
- Macmillan Cancer Support. Your rights at work. www.macmillan.org.uk/rightsatwork (accessed 5 December 2019).
- Loughney L, West M, Kemp G et al. Exercise intervention in people with cancer undergoing adjuvant cancer treatment following surgery: a systematic review. Eur J Surg Oncol 2015; 41 (12): 1590–1602.
- Kirby J. It’s worth quitting smoking—even after developing lung cancer. scienceblog.cancerresearchuk.org/2010/03/16/it%E2%80%99s-worth-quitting-smoking-%E2%80%93-even-after-developing-lung-cancer (accessed 5 December 2019).
- Stevinson C, Campbell A, Cavill N et al. Physical activity and cancer: a concise evidence review. London: Macmillan Cancer Support, 2017. Available at: www.macmillan.org.uk/_images/the-importance-physical-activity-for-people-living-with-and-beyond-cancer_tcm9-290123.Pdf
- Macmillan Cancer Support. The burden of cancer and other long-term health conditions. London: Macmillan Cancer Support, 2015. Available at: www.macmillan.org.uk/documents/press/cancerandotherlong-termconditions.pdf
- Roy S, Vallepu S, Barrios C, Hunter K. Comparison of comorbid conditions between cancer survivors and age-matched patients without cancer. J Clin Med Res 2018; 10 (12): 911–919.
- Chitnis X, Steventon A, Glaser A, Bardsley M. Use of health and social care by people with cancer. London: Nuffield Trust, 2014. Available at: www.nuffieldtrust.org.uk/files/2017-01/social-care-for-cancer-survivors-research-summary-web-final.pdf
- Macmillan Cancer Support. Throwing light on the consequences of cancer and its treatment. London: Macmillan Cancer Support, 2013. Available at: www.macmillan.org.uk/documents/aboutus/research/researchandevaluationreports/throwinglightontheconsequencesofcanceranditstreatment.pdf
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