Holistic care: placing people with head and neck cancer on a path to recovery

With the incidence of head and neck cancer on the rise in the UK, two Wales-based clinical nurse specialists launched a recovery programme to advocate patient needs post-treatment – and amass ideas for further support  

According to Cancer Research UK, the rates of head and neck cancer have increased by 24% over the past decade. The disease is becoming more prevalent among a younger, working-age demographic, who can be particularly affected by the debilitating side effects of surgery and treatment. Yet, there is a dearth of specialist recovery services to support people once they have completed treatment.

This gap was identified two years ago by two nurses in the head and neck cancer service at Hywel Dda University Health Board in Wales. They were concerned that people with head and neck cancer were repeatedly experiencing the same issues.

Struggling with recovery

‘We were thinking about how to reach out to patients who were struggling with recovery because there’s no post-treatment rehab programme available in our health board for head and neck cancer patients,’ says Macmillan head and neck cancer clinical nurse specialist Karen Howarth.

‘Patients are supported well before and during treatment. But a lot of patients felt a bit lost after treatment, when they’re feeling well enough to get on with their lives, yet they’re still not physically and mentally able to manage everything and are in a period of re-adjusting,’ adds Ms Howarth’s colleague and fellow clinical nurse specialist Anwen Butten.

‘We booked a venue, asked speakers to come in and invited seven patients. It was successful and the service has snowballed from there’

Karen Howarth

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In July 2016, the nurses conducted two focus groups to identify patient needs post-treatment and collate ideas for areas requiring greater support. Within eight months, and with no additional funding from the health board, they launched a pilot recovery programme with the help of new team member Emma Williams, a support service assistant.

‘We booked a venue, asked speakers to come in and invited seven patients. It was successful and the service has snowballed from there. We ran three programmes last year,’ says Ms Howarth.

Practical weekly sessions

Through weekly, three-hour free sessions over three weeks, patients – who have the option of being accompanied by carers, friends or relatives – attend talks and practical sessions on topics specific to their recovery.

The aim is to give them a better understanding of the long-term side effects of their treatment and to promote self-management to improve their quality of life. The sessions, which were piloted at the Glangwili General Hospital, Carmarthen, are now held in Bro Myrddin Bowls Club in Carmarthen.

The Holistic Acute Recovery Programme (HARP) for head and neck cancer patients is Wales’ first cancer site-specific recovery programme.

‘We couldn’t find another programme like HARP in Wales, and there’s only one similar programme in Leeds,’ says Ms Howarth. ‘There’s nothing else we could have modelled it on.’

The long-term side effects for people with head and neck cancer include dry mouth from radiation therapy and problems with eating, drinking and speech. Programme sessions on these issues are given by dental nurses, speech and language therapists and dieticians.

‘A lot of the surgery is disfiguring and speech gets impaired,’ says Ms Howarth. ‘They might have a hole in their necks and have voice prosthesis. Some people may never get to speak again. It’s debilitating.’

What is the Holistic Acute Recovery Programme?                                 

The Holistic Acute Recovery Programme (HARP) is a charity-based series of events that is:

• Open to all head and neck patients who have recently completed cancer treatment
• Provides talks, advice and education on the long-term side effects of treatment and how to self-manage them
• Consists of two- to three-hour sessions, once a week for three weeks
• Sessions include: lymphoedema management, oral hygiene, the benefits of physical activity and welfare benefits

The objectives of HARP are:

• To educate people about the long-term side effects of treatment
• To promote self-management of these side effects
• To signpost people to any other local services
• To raise awareness of the benefits of physical activity

Body image issues

Fatigue and body image issues and lymphoedema of the face and neck can also be problems. The benefits of physical activity in combating fatigue and promoting well-being are covered by exercise referral scheme advisers, counsellors, alternative therapists, occupational therapists, welfare and cancer information support services.

‘We have approximately 75 new cases a year in our health board and it’s increasing every year, as is the survival rate of head and neck cancers’

Anwen Butten

The most popular session is given by a patient participant from the first programme who is joined by his wife to talk about their cancer journey.

On a UK-wide scale, the demand for such recovery programmes will only increase as the patient demographic shifts from typically older to younger patients, with men in the majority. While the biggest risk factor for this cancer in the UK remains alcohol and smoking, the human papillomavirus (HPV) virus has increasingly become a factor, which can be transmitted through oral sex.

‘We have approximately 75 new cases a year in our health board and it’s increasing every year, as is the survival rate of head and neck cancers,’ says Ms Butten.

‘Typically patients used to be people from lower socio-economic backgrounds who were heavy smokers and drinkers,’ adds Ms Howarth. ‘But that’s changing now. They’re a lot younger because of the spread of the HPV virus.

‘We’ve got people in their forties and fifties now with big head and neck tumours, but they are responding well to radiotherapy.’

Raising the profile

In July this year, the Department of Health announced it is extending the HPV vaccine already given to girls to boys aged 12-13 in England to protect against HPV-related cancers. This has helped to raise the profile of the disease that can go undetected for some time given early symptoms can be a sore throat or mouth ulcers.

Post-recovery programmes are particularly important to patients who are struggling with the financial and emotional worries of needing to get back to work.

‘A lot of our patients are working and have young families,’ explains Ms Howarth. ‘They are out of work for a period of time and some people return to work too soon because of financial pressures.’

She adds: ‘Normally we have between four and eight patients per programme, plus their partners. This is the sixth programme we have run. This year we have had 31 patients and 21 relatives come along. Now it’s an ongoing service.’

‘If we had listened to all the negativity around how difficult it would be to arrange speakers and how we would sustain it, we would never have done it’

Anwen Butten

Part of patient pathway

The programme is continually being evaluated and adapted based on people’s holistic needs assessments. ‘They identify concerns at the beginning and afterwards,’ says Ms Howarth. ‘We can show that their concerns have reduced greatly and at the six-month review there’s not as many issues as before, such as with getting back to work and the fatigue side of things.’

The HARP programme is now part of the patient pathway. ‘We tell patients we will be inviting them to the programme when the time is right for them,’ says Ms Butten. ‘Some are two months post-treatment and some are eight months.’

HARP has also proven wrong some of the more sceptical members of staff who thought it was not possible to run a rehab service without health board funding. The service was awarded charity of the year by Hywel Dda Health Board Charities in 2017 and fundraised £12k. It costs approximately £225 per weekly session and fundraising is ongoing.

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‘If we had listened to all the negativity around how difficult it would be to arrange speakers and how we would sustain it, we would never have done it,’ says Ms Butten.

Ms Howarth says other health boards in Wales are now looking at how they could duplicate such a service and that it could be suitable UK-wide. ‘This could be replicated for all head and neck cancer services.’

Further information

• Cancer Research UK