Charlotte Argyle, Carers Support Programme Manager for Macmillan Cancer Support, offers GPs guidance from Macmillan on identifying and supporting people caring for someone with cancer

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Read this article to learn more about:

  • impacts on the health and wellbeing of cancer carers
  • how GPs can identify and support ‘hidden’ carers
  • sources of support and the local authority carers assessment.

Key points

 

There are an estimated 1.5 million people aged 16 years or over in the UK currently looking after a family member or friend with cancer.1 Nearly one-half of these cancer carers do not get any support to care.1 Only 52% are identified as carers by others, and nearly a half say they do not themselves identify with the term ‘carer’.1 Yet caring impacts on their mental and physical health, finances, relationships, and ability to work. Macmillan’s report Under pressure: the growing strain on cancer carers revealed that up to 70% of cancer carers experience an impact on their emotional wellbeing or mental health with a quarter (26%) experiencing depression.2

Impact on carers

Since 2011, the proportion of carers looking after someone with cancer has increased by more than a quarter.2,3 Cancer carers are now providing more hours of care, including more complex hands-on care such as personal care and healthcare tasks.The role of informal carers has never been more important, especially given the current pressures on both the NHS and social care systems.

Cancer carers, however, are getting older2 and possibly because of this, caring is having a greater impact on their health. At least 1 in 5 cancer carers (20%) say that caring is having an impact on their physical health, compared with around 1 in 8 (13%) in 2011.2 The strain of caring can lead to ‘carer breakdown’ and emergency admissions to hospital for both the person with cancer and their carer.

Identifying and supporting carers

General practitioners play a key role in supporting cancer carers—see Box 1, below, for feedback from carers who have experienced such support.

Box 1: Carers experience of support from GPs

’But it’s difficult watching your dad go through that, it takes its toll. Everyone tells you that you’re so strong, but you don’t feel it. You can put on a mask, but under pressure it starts to slip. So I came to see you again.

‘ … you made the difference. You made the hardest year of our lives just a little bit better. You made it manageable.’

Forever chasing rainbows: Dear doctor: an open letter written by Victoria who cared for her father.4

‘I love my GP surgery so much, they go the extra mile every time I’m in touch, quick appointments if I’m worried about my cared for person, prescriptions request via email, the staff are aces.’

David, carer, recommending his GP surgery as carer-friendly on the Carers Week website.

‘The GP especially was great (long live the NHS!). Macmillan nurses too.’

A carer for his father, YouGov for Macmillan Cancer Support, 2016

General practitioners and other practice staff are the professionals most likely to identify these carers (27%),1 and a similar number of carers say they have received support from their GP. The majority of carers (68%) rate this support as ‘quite good’ or ‘very good’.1 General practitioners are the professionals that carers are most likely to turn to for much needed emotional support, and carers who need any additional support most commonly wish to receive this from their GP surgery (41%).1

Carers need to be identified and signposted early

Many GPs are already familiar with the need to identify, register, and signpost carers to support and the importance of valuing and supporting them in their role.5,6 Cancer carers are often identified if the person they care for enters the end of life phase. A network of support is put in place, especially if the person with cancer wishes to die at home, and carers receive support from health professionals, the local hospice, and Macmillan.

Only 8% of cancer carers, however, say they are caring for someone who is at the end of life.1 A large proportion (35%) are supporting someone who is undergoing treatment, and 18% are looking after someone either living with the long-term effects of cancer treatment, or living with advanced/progressive cancer, respectively.1 The vast majority of carers (78%) report that they started caring early in the person’s cancer journey, that is when they were diagnosed with cancer but had not yet started treatment.1 With over a half of cancer carers going unrecognised, it is essential that they are identified as early in their caring journey as possible and signposted to support.

Role of secondary care

Health professionals in secondary care are also vital in ensuring cancer carers are identified and supported. General practitioners tell us that during the cancer patient’s treatment, they may have limited contact with the patient and their carers. Macmillan has called for formal mechanisms to be put in place to incentivise secondary care professionals to identify cancer carers. We have also called for improved communication between primary and secondary care, for example recording the carer’s details in treatment summaries for the GP.

Why are cancer carers sometimes overlooked?

In its response to the Department of Health’s carers’ strategy consultation, Macmillan Cancer Support said:7 ‘We believe that the fluctuating nature of cancer may be a contributing factor as to why cancer carers are often missed in the wider rhetoric, policy and planning discussions about carer support. Long treatment cycles and periods of remission can mean that cancer carers move in and out of caring which may not fit with the more common perception of a caring role. Many people think of permanent disability, degenerative long-term conditions, and frailty associated with old age when they think of people who require care. Around half of those diagnosed with cancer today live for at least ten years after diagnosis, yet many people aren’t aware of the impact and long-term consequences of cancer and its treatments and the long-term impact on family and friends who provide care.’

What can GPs do to identify hidden cancer carers?

Macmillan has worked with health professionals, including GPs, to address the barriers they may face to reaching and supporting cancer carers. Below is some guidance on how to identify, signpost, and support this group. More detailed advice and guidance for GPs can be found at Macmillan’s Supporting carers webpage.8

Identify

  • Cancer carers are most likely to be women of late working age (45–64 years), caring for a parent1,2
  • 63% of cancer carers don’t live with the person they care for1
  • There are growing numbers of carers aged over 65 years, mainly caring for a spouse1
  • Avoid asking patients, or the person accompanying them, if they are a ‘carer’. Try asking if they are ‘supporting’ or ‘looking after’ someone with cancer
  • Cancer care reviews can be an opportunity to identify if anyone is caring for the patient
  • The flu vaccination campaign can be an opportunity to identify hidden carers. Carers are entitled to a free flu jab, and encouraging them to have one to protect themselves and the person they care for can open up a conversation about their role and how they are coping
  • Carers Week9 (12–18 June 2017) is an ideal opportunity to reach out to hidden carers and encourage them to take up support. Your patient participation group could hold an event such as a coffee morning, or a drop-in session with the local carers centre
  • Quick and easy ways to encourage cancer carers to self-identify include posters in the surgery and information about carers in your practice leaflets, newsletters, and website. Remember to use phrases such as ‘Do you look after someone with cancer?’

Register

See Table 1 (below) for some Read and CTV3 Codes relating to carers. Practitioners are advised to seek permission from patient and carer before they record these details on patient records10 and to:

  • think ‘carer’ during consultations, including chronic disease clinics
  • consider other registers; can any of these indicate hidden cancer carers?
  • check the cancer register and to consider the end of life/palliative care register.
Table 1: Read and CTV3 Codes for carers
 Read (EMIS)CTV3 (SystmOne)
Is a carer 918G Ua0VL
Has a carer/partner is an informal carer 918F YaoYj
Is no longer a carer 918f XaL1Y

Signpost

The top three types of support cancer carers say they need are:1

  • emotional support
  • information and advice on available support
  • financial/benefits advice and information. Macmillan provides this support and more for cancer carers via their support line (0808 808 00 00 Monday to Friday, 9am–8pm), website, and local services.

Cancer carers most commonly prefer to receive support face-to-face or online.1 For face-to-face support, Macmillan’s local services include information centres, volunteer schemes, and support groups. The volunteer schemes offer practical and emotional support, such as help at home, befriending, transport to hospital, and respite support for carers. Macmillan’s website includes an online community for peer support, with two groups dedicated to carers.

Cancer carers can access financial support via Macmillan’s support line, website, and local benefits advisers. Financial issues are often linked to the impact of caring on work. Around one-half of cancer carers are in employment, so Macmillan offers advice and information on their rights including the right to request flexible working, and protection under the Equality Act 2010.11

Other voluntary sector organisations also offer support, for example Carers Trust12 has a network of local respite schemes and carers centres, which can link carers into local support. Marie Curie also offers support for carers and families,13 as well as many other organisations for people with specific cancer types.

Carers Week

Carers Week is a great opportunity to support cancer carers by signposting them to local events or holding your own. The aim of the week is to raise awareness of informal carers, celebrate the contribution they make, and reach out to offer them support. Thousands of events take place across the UK, from information displays and advice sessions to social activities and pampering events. Details of local events can be found on the Carers Week website9 and you can sign up to hold your own. Or you could find ways to make your practice carer-friendly throughout the year, such as by:14

  • offering flexible appointments and priority time slots for carers
  • making home visits for carers
  • developing a practice policy for carers informed by carers and the patient participation group
  • appointing a carer lead(s) to champion it.

Local authority carer support

Statutory support for carers sits with local authorities, under the auspices of recent legislation such as the Care Act 2014 (England),15 the Social Services and Well-being (Wales) Act 201416 and the Carers (Scotland) Act 2016.17 These significant pieces of legislation for the first time give carers the same rights to assessments and support as the person they are caring for. The Care Act includes a requirement on local authorities and health bodies to work together to identify and support carers.15 Macmillan welcomed this as it has been calling for better identification and support for cancer carers within the health service. Macmillan is also influencing the development and implementation of legislation in Scotland and Wales, to ensure that integrated working between healthcare and social care benefits cancer carers as well as patients.18

Carers assessments

Local authority carers assessments are the gateway to support such as respite breaks, personal budgets, and help at home.19,20 General practitioners play a vital role in identifying and signposting/referring carers to support, as cancer carers have far more contact with healthcare than social care—yet the social care system is responsible for carers assessments, respite breaks, etc.

GP practices should have a protocol in place to refer (with their consent) identified carers (and the person they care for, if appropriate) to their local social services for a needs assessment; the Royal College of General Practitioners website offers some helpful resources.21 The type of carer support available can include help with transport, care for the person with cancer, and respite breaks.19 Social care is not routinely free at the point of access so carers may need to pay towards their care. There may also be help available from local voluntary organisations such as Macmillan, and the council should signpost carers to this.

Conclusion

As the number of people living with cancer in the UK continues to grow, so too will the number of people caring for them. There are an estimated 2.5 million people with cancer in the UK today, and this number is estimated to grow to 4 million by 2030.1,22 The most common source of support for this growing population is family and friends. Supporting these carers can help them not only to maintain their own health and wellbeing, but also their ability to care. Macmillan offers a range of support for cancer carers, as well as guidance for professionals8 on how to ensure carers can get the help they need. By working in partnership with social care and the voluntary sector, GPs and practice staff can improve outcomes for cancer carers and the people they care for.

Key points

  • Nearly one-half of the people currently caring for someone with cancer do not get any support
  • Caring for someone with cancer can have long-term impacts on the mental and physical health, finances, relationships, and ability to work of the carer
  • Increasing numbers of cancer carers are:
    • providing more hours of care, including personal and healthcare tasks
    • reporting adverse impacts on their own health from caring
  • Many cancer carers do not self-identify and are not recognised as carers by others
  • Cancer carers are commonly identified by general practice staff and turn to them for support:
    • secondary care practitioners also need to identify cancer carers and notify GPs about them
  • Many people become carers from the point of diagnosis onwards so need to be identified and signposted to support as early as possible
  • Carers now have the same rights to assessments and support as the person they are caring for
  • GPs have a vital role to play in referring/sign-posting cancer carers to support, including carers assessments
  • Local authorities and health bodies are required to work together to identify and support carers
  • Macmillan Cancer Support and other organisations support cancer carers and professionals who support cancer carers.

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References

  1. Macmillan Cancer Support. The rich picture—cancer carers. Available at: www.macmillan.org.uk/_images/carers-of-people-with-cancer_tcm9-282780.pdf
  2. Macmillan Cancer Support. Under pressure—the growing strain on cancer carers. Available at: www.macmillan.org.uk/documents/campaigns/under-pressure-the-growing-strain-on-cancer-carers-macmillan-cancer-support-september-2016.pdf
  3. Macmillan Cancer Support, Ipsos MORI. More than a million: understanding the UK’s carers of people with cancer—a report by Ipsos Mori for Macmillan Cancer Support. Ipsos MORI and Macmillan Cancer Support, 2011. Available at: www.macmillan.org.uk/documents/cancerinfo/ifsomeoneelsehascancer/more_than_a_million.pdf
  4. Macmillan Cancer Support. Online community, blogs. Forever chasing rainbows—dear doctor: an open lettercommunity.macmillan.org.uk/blogs/b/weblog253/archive/2016/03/24/dear-doctor-an-open-letter (accessed 8 March 2017).
  5. Independent Cancer Taskforce. Achieving world-class cancer outcomes: a strategy for England 2015-2020. July 2015. Available at: www.cancerresearchuk.org/sites/default/files/achieving_world-class_cancer_outcomes_-_a_strategy_for_england_2015-2020.pdf
  6. NHS. Next steps on the NHS Five Year Forward View. NHS, March 2017. Available at: www.england.nhs.uk/wp-content/uploads/2017/03/NEXT-STEPS-ON-THE-NHS-FIVE-YEAR-FORWARD-VIEW.pdf
  7. Macmillan Cancer Support. Response to the Department of Health carers strategy consultation, 2016www.macmillan.org.uk/get-involved/campaigns/carers/index.html
  8. Macmillan Cancer Support. Supporting carerswww.macmillan.org.uk/about-us/health-professionals/resources/supporting-carers.html (accessed 9 March 2017).
  9. Carers UK. Carers weekwww.carersweek.org (accessed 8 March 2017).
  10. Royal College of General Practitioners website. Read codes for carerscaringforcarers.info/camden/resource/read-codes-for-carers/#.WOYSLM_ru4F (accessed 5 April 2017).
  11. Macmillan Cancer Support. Work and cancer—if you’re supporting a loved onewww.macmillan.org.uk/information-and-support/organising/work-and-cancer/if-youre-a-carer/index.html#162557 (accessed 8 March 2017).
  12. Carers Trust. carers.org (accessed 8 March 2017).
  13. Marie Curie. Being there for someone with a terminal illnesswww.mariecurie.org.uk/help/being-there (accessed 5 April 2017).
  14. Carers UK. Carers week—health serviceswww.carersweek.org/get-involved/health-services (accessed 9 March 2017).
  15. Care Act 2014. Available at: www.legislation.gov.uk/ukpga/2014/23/contents/enacted (accessed 9 March 2017)
  16. Social Services and Well-being (Wales) Act 2014. Available at: www.legislation.gov.uk/anaw/2014/4/contents (accessed 9 March 2017).
  17. Carers Act (Scotland) 2016. Available at: www.legislation.gov.uk/asp/2016/9/contents (accessed 9 March 2017).
  18. Macmillan Cancer support. Tackle the carers’ crisiswww.macmillan.org.uk/get-involved/campaigns/carers/index.html (accessed 5 April 2017).
  19. Macmillan Cancer support. Support for youwww.macmillan.org.uk/information-and-support/organising/practical-preparation-for-treatment/looking-after-someone/looking-after-yourself.html (accessed 5 April 2017).
  20. NHS Choices. Care and support. Carers’ assessmentswww.nhs.uk/Conditions/social-care-and-support-guide/Pages/carers-assessment.aspx (accessed 5 April 2017
  21. Royal College of General Practitioners. Carers supportwww.rcgp.org.uk/clinical-and-research/clinical-resources/carers-support.aspx (accessed 5 April 2017).
  22. Maddams J, Utley M, H Møller. Projections of cancer prevalence in the United Kingdom, 2010–2040. Br J Cancer 2012: 107 (7); 1195–1202. G

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