As survivor numbers grow, specialist services will need support in meeting their needs, says Ann Shuttleworth
More from: Cancer Survivorship
People with little personal or professional experience of cancer services might assume that moving on from active treatment and into life as a cancer survivor is a cause for celebration. However, cancer specialist professionals, patients and their families know that the situation is not so clear-cut.
‘Sometimes it’s easy for professionals and carers to think: “But you’ve been lucky, you’ve survived and there are people much worse off than you”,’ says Jacqui Graves, Macmillan development manager for Thames Valley and Northamptonshire. ‘But patients aren’t comparing themselves with other people - they are comparing themselves now with themselves before cancer.’
Having previously worked in head and neck cancer, she cites this group as an example.
‘Around half of people with head and neck cancer survive but these tumours can leave patients with huge issues,’ she explains. ‘Many have their tongue removed or end up with disfigured faces, which are extremely difficult to come to terms with. They may be unable to kiss or eat, they may never regain intelligible speech. They go through a bereavement process like people with severe burns do, and some just can’t get over their experience.’
People receiving active treatment for cancer have a clear focus - they want to successfully complete their treatment. They are receiving regular and intensive professional support, and most will also have the support of family and friends.
As treatment ends, survivors can experience a range of negative emotions and practical challenges, yet their first follow-up appointment may be months away. There is increasing acknowledgement that survivors need help and support beyond their treatment phase.
Many cancer services do offer survivors short-term support in the form of ‘moving on’ or ‘step down’ programmes. These usually take the form of a six-week course run for small groups, addressing rehabilitation needs (see case study).
However, Macmillan Cancer Support believes healthcare providers outside of specialist cancer care need to contribute to the development and implementation of a comprehensive survivorship pathway which acknowledges that for increasing numbers of patients, cancer is becoming a long-term condition rather than a death sentence.
‘To date there have been clear treatment care pathways and a clear end-of-life care pathway is emerging, but now we are identifying what a survivorship care pathway looks like,’ says Ms Graves.
As with many long-term conditions, nurses will have the opportunity to play significant roles in this pathway.
Survivors can have a range of needs, depending on individual circumstances, but they can include needs for support in:
- Adapting to the practicalities associated with physical changes resulting from their cancer or treatment;
- Coming to terms with what has happened to them and how their lives have changed;
- Coping with changes in relationships;
- Dealing with employers and returning to work;
- Accessing benefits or sources of financial advice.
While they can address these support needs, short programmes provided by some cancer services are offered at a specific time and delivered over a short period. However, when cancer is a long-term condition, patients’ needs will change over time. With an established care and support pathway, services could be provided in settings such as primary care, enabling patients to access them as needs arise.
Ms Graves believes primary care teams will increasingly take responsibility for the long-term management of people living with and beyond cancer. ‘They will increasingly receive yearly follow-up from primary care teams in much the same way as people with diabetes, asthma and other long-term conditions,’ she says. ‘Primary care needs to start taking responsibility for this group of patients rather than deferring to the specialists.’
And with clear care pathways and referral criteria to ensure patients return to specialist services where necessary, nurses are well able to take on this work. They are accustomed to providing monitoring and follow-up, and using protocols that enable them to refer patients for medical assessment or back to specialist services.
As a high-quality survivorship pathway is developed, assessment and care planning will be as important at the end of treatment as it is at the beginning.
‘At the end of active treatment there needs to be an end-of-treatment assessment to identify patients’ ongoing needs, problems and issues and to implement a survivorship care plan,’ says Ms Graves.
And care plans that involve non-specialist services mean clear channels of communication between cancer services and other settings will also be vital to ensure patients have access to the support they need as they move out of active treatment - and that they receive prompt referral back into specialist services if necessary.
Once a survivorship pathway is established, primary care nurses may well run group programmes similar to those currently run by specialist services. If so, they may benefit from involving other professionals in developing and/or delivering the content. Penny Boon (pictured below), who helps to run the Moving On With Confidence programme at Buckinghamshire Hospitals NHS Trust, believes interprofessional working is worthwhile.
‘We were very fortunate to work with the Macmillan clinical psychologists in developing our course,’ she says. ‘They helped to ensure it really addresses the emotional issues patients face.’
But patients may experience a wide range of needs, and nurses may not be the most appropriate people to address them. Instead, their role may involve identifying needs - or helping patients to acknowledge them, and to refer them to other services.
‘Nurses can’t be expected to know everything about these areas so they need places to refer patients to,’ says Ms Graves. ‘For example, we need vocational rehabilitation advisers. They will know employment law and be able to have a conversation with employers.
‘We know cancer survivors’ energy and concentration span reduce while they are receiving treatment, and they don’t always come back. Patients often tire easily and find it difficult to retain information, so they may need to go back to work part-time or even into another role within the organisation. It’s not just about getting them a pay-off - we want them back in work.’
In some cases patients may need help to move into a new career. In such cases vocational support may be an obvious need, but they may also need emotional or psychological support - particularly if they are unable to return to a career they loved.
Where patients experience emotional problems related to any repercussions of their illness, they may need referral for counselling or other psychological therapies. They can also be advised to seek support from services such as Relate if they have relationship difficulties.
However, Ms Graves points out that this will be a very new way of working for most nurses, and they will need training to deliver a survivorship care pathway. This training will enable nurses to develop the skills to raise difficult issues such as psychosexual or relationship problems sensitively so that patients feel able to discuss them. It must also enable nurses to know when they can support patients themselves and when to refer them elsewhere for more specialist input.
But one of the key changes required in nurses and other healthcare professionals - in both acute and primary care settings - is a shift in attitude. They need to learn to see that cancer can be a long-term condition, and that cancer survivors have needs that go beyond simply monitoring them for a recurrence of their disease.
Moving On With Confidence is a six-week course run at Buckinghamshire Hospitals NHS Trust for people who have finished active cancer treatment. It was developed by Macmillan clinical psychologists Denise Cottrell and James Parker and Macmillan cancer education and information facilitators Penny Boon and Liz Turnbull.
The Macmillan-sponsored course aims to enhance coping skills and well-being, and is open to survivors of any form of cancer. The first was run in late 2007.
‘We decided it should run as a course rather than sessions that people could pick and choose from as we felt this would help give people the confidence to open up,’ says Ms Boon. ‘People need to develop trusting relationships if they are to discuss difficult issues, and this may not happen if they see different people in each session.’
The two-hour sessions begin with lunch, and cover a range of subjects to help group members identify their responses to stress and give them practical and emotional coping strategies. If necessary they are referred on to other services such as counselling or psychology, or signposted to relevant support groups at the end of the course.
Evaluations of the first two courses were extremely positive, with members commenting that they were both enjoyable and helpful, and that they had appreciated the opportunity to meet others in similar situations to themselves.