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Enhancing quality of life for people after cancer care

With cancer survival rates continuing to grow, the NHS is sharpening its focus on supporting people once they have finished receiving treatment.  For many people who are living with and beyond cancer, there is a significant physical, mental and lifestyle legacy from the disease and treatment. Large numbers of people feel abandoned after cancer care. In a bid to combat this, NHS England has produced a quality of life metric 

With cancer survival rates continuing to grow, the NHS is sharpening its focus on supporting people once they have finished receiving treatment.  For many people who are living with and beyond cancer, there is a significant physical, mental and lifestyle legacy from the disease and treatment. Large numbers of people feel abandoned after cancer care. In a bid to combat this, NHS England has produced a quality of life metric 


Cancer survival has more than doubled in the past 40 years in the UK, and half of people diagnosed with a form of the disease survive for ten years.

While improvements to survival are to be celebrated, this means there are 2.5 million people living with cancer in the UK. For many, there is a significant physical, mental and lifestyle legacy from the disease and treatment.


Picture: iStock

In its 2013 report, Cured – but at what cost?, Macmillan Cancer Support estimated that at least 625,000 people in the UK are facing poor health or disability after treatment for cancer.

This included high rates of chronic fatigue, sexual dysfunction, pain and faecal and urinary incontinence. There can also be psychological and financial implications. Late effects from treatment can include heart and lung damage.

Last year, the charity’s survey of more than 2,000 people found that one in three (34%) have physical problems two years after treatment, and almost a third (30%) said their emotional well-being was still affected. People frequently experience feelings of depression and anxiety, particularly around not being able to ‘get back to normal’, the 2017 report said.

All the evidence suggests that many patients are not getting the right support after finishing treatment. But the experience of patients living with or surviving cancer is now getting more focus in the NHS.

Tracking development

Last September, NHS England announced that quality of life for people with cancer will be tracked in an attempt to improve care once treatment ends.

The new ‘quality of life metric’, which is the first of its kind, will use questionnaires to measure how effective this support is. The data will be made available on My NHS helping patients, the public, clinicians and health service providers see how well their local after cancer care support is doing.

The new approach is being tested with patients in five areas in a pilot due to finish in early 2019.

Cancer statistics

  • At least 350,000 people living with and beyond cancer are experiencing chronic fatigue
  • Around 350,000 are having sexual difficulties
  • At least 200,000 are living with moderate to severe pain after curative treatment
  • Around 150,000 are affected by urinary problems such as incontinence
  • Around 90,000 are experiencing gastrointestinal problems, including faecal incontinence, diarrhoea and bleeding

Source: Macmillan Cancer Support (2013) Cured - But at What Cost?

The questionnaire, which will look at the long-term impact on finances, the ability to maintain social networks and psychological well-being and will begin among people who are between 12 and 24 months post treatment. It should be rolled-out nationally next year, NHS England says.

Another change that could provide benefits to people post treatment is the Recovery Package, which sets out key interventions, including a holistic needs assessment and a personalised care plan both at diagnosis and at the end of treatment.

All patients in England should be able to access the Recovery Package by 2020, and it is also available to at least some patients in the three other UK countries.

Cancer charities have welcomed the metric and called for the Recovery Package to be available to all patients in all four UK countries.

Greater access to holistic and personalised care planning

Dany Bell, Macmillan's specialist advisor for treatment and recovery, says the large number of different types of cancer, wide range of treatments and the varying impact they can have on a person demonstrates the need for greater access to holistic and personalised care planning.

This allows nurses to take into account factors that can have an impact on recovery, such as whether a patient has other long-term conditions, their age and general health.

An important part of improving the experience of people living with and beyond cancer is to strengthen self-management, Ms Bell says.

‘The traditional form of cancer follow up where people come back to a clinic for a check up doesn’t really support them, it is more of a clinical check to look for recurrence.

'The whole focus now is on how we improve the care and support for people, and it is important to empower people with tools to self manage. It is not easy, and other health conditions such as heart disease and diabetes are further ahead of us in this.’

It is hoped that better support and understanding of self management could help tackle what patients currently describe as ‘falling off the end of a cliff’ when treatment finishes.

One patient who has finished treatment for squamous cell carcinoma spoke of her despair in the 2017 Macmillan report – Am I Meant to be OK Now?

‘Fear of recurrence, loneliness and general fatigue sometimes made me despair and it was a battle to keep going,’ she said. ‘There have been times when it’s been so bleak, you think: "It’s just not worth it. I can’t accept what they call the new norm."'

Patchy services

Amanda Shewbridge, Macmillan nurse programme manager for living with and beyond cancer for South East London Accountable Cancer Network, says the availability of services is still patchy, but the Recovery Package should help.

‘People need timely personalised information and support to maximise their ability to self manage elements of their care,’ she says. ‘One of the elements of the Recovery Package is to undertake holistic assessment of patients’ unmet needs and to develop a plan together to address these.

'Common ways that cancer nurses support patients are by talking about the psychological impact of their diagnosis and treatment, offering referral to further psychological support where appropriate, signposting to services to assist with financial and social concerns, and to patient support groups. Nurses can also assist with lifestyle change discussions and facilitate onward referrals to help patients live well during and after cancer treatment.’

Along with nursing posts focusing on supporting cancer survivors, Macmillan also pump-primes non-clinical support posts. These cancer support workers can be in acute or community settings, and help people navigate local services and provide non-clinical support after treatment has finished.

Six-week programme

One approach nurses can suggest to patients is the Help to Overcome Problems Effectively (HOPE) programme.

The course concentrates on focusing and rediscovering inner strengths and resilience to help people cope emotionally, psychologically and practically. It includes goal setting and action planning, stress management techniques such as mindfulness and relaxation, fatigue management and being positive. Healthy lifestyle, body image, sexuality and intimacy are all discussed, along with coping with fear of cancer recurrence.

Developed by MCS with Coventry University, it is a six-week course, with each weekly session lasting 2.5 hours. Trained facilitators who are health or social care professionals, or volunteers who have had a cancer experience, run the free sessions.

Children and young people

Children and young people who are going through or have had cancer treatment can face huge difficulties returning to school and ‘normal life’.

It is estimated by charity Clic Sargent that there are 10,000 survivors of childhood cancer who are age 24 and under living in the UK. Approximately 30% of survivors have a chronic health condition and a further 30% have another ongoing health-related problem.

Childhood cancer charities are trying to raise awareness of the difficulties that many children face during and after treatment.

Dianne Parkes, who set up charity Joss Searchlight, says that the she has received many reports of children being bullied, excluded from extra curricular activities and even asked to leave school when they are unable to keep up with their peers. Her son Joss was bullied and attacked by children after being diagnosed with an incurable brain tumour, and ended up moving to a new school with better support.

‘Having battled to return to his regular school, he was jeered at for his lessened ability and even kicked in the head three times causing a large swelling,’ she says.

‘He was also jeered at by older children as “the boy that was going to die”. It was heartbreaking.’

Ms Parkes said cancer nurses could help by supporting good communication with the school and family. Going into school to talk to staff and students could also improve the experience for a child returning to school.

 

Sarah Orr, lead head and neck cancer clinical nurse specialist at University College London Hospitals NHS Foundation Trust, encourages nurses to start talking about self-management early on in the course of a patient’s journey to prepare them for the experience of living with and beyond treatment.

‘A lot of it is about using the holistic needs assessment, not just at specific points, but when a patient you have been working with for a while seems to be struggling to cope. Going through that and using the distress thermometer can help a patient identify and tell you what is concerning them,’ she says.

‘It is important for nurses in the acute sector to talk about self management with patients from early on. Although we are there to support patients, we want to empower them to have the confidence and competence to self manage.’


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