Analysis

End of treatment bells in cancer wards: sound of hope or upsetting jangle?

Ringing a bell to mark the end of cancer treatment is becoming more common in the NHS, but not everyone welcomes it

Ringing a bell to mark the end of cancer treatment is becoming more common in the NHS, but not everyone welcomes it 

  • End of Treatment Bells seen by some as inspiring, celebrating end of cancer journey
  • Whether to install a bell can pose a dilemma, as some people regard them as inappropriate
  • Debate raises question of whether people with cancer receive sufficient psychological support
Picture shows a boy ringing a bell to mark the end of his cancer treatment. Such ringing of bells is becoming more common in the NHS, but some patients object to it.
Picture: Alamy

The sound of bells ringing out across cancer units is becoming more commonplace in the NHS.

First introduced in 2014, there are now more than 200 of these end of treatment bells in 154 cancer units across the UK.

The bells were first taken up by children’s cancer teams, but more recently have been adopted by an increasing number of adult units.

Children with Cancer UK views bell as symbol of 'hope and strength'

Supporters believe they offer inspiration and a chance to celebrate what for many is hard and traumatic progress through cancer treatment.

The charity Children with Cancer UK has even adopted the bell as part of its logo, arguing it is a symbol of ‘hope and strength’.

Logo of the charity Children with Cancer UK, showing a bell being rung. Ringing a bell to mark the end of cancer treatment is becoming more common in the NHS, though some patients object to it.

But as the popularity of the bells has grown, some have started questioning whether they are always appropriate, given that not everyone makes it to the end of treatment.

‘For those who have little prospect of being cured, hearing this bell being rung is like a kick in the teeth’

Jo Taylor, founder of After Breast Cancer Diagnosis

An article questioning their use by Jo Taylor, founder of campaign group After Breast Cancer Diagnosis, sparked debate on social media.

Ms Taylor, who has undergone more than 80 rounds of treatment since being diagnosed in 2007, recounted in an article published in the British Medical Journal, how she had heard the bells rung three times in one week.

265

bells installed around the world with help from End of Treatment Bells charity

‘For those of us living with recurrent cancer who have little prospect of being cured, hearing this bell being rung is like a kick in the teeth.’

Always the risk of recurrence or secondary cancer

She says that rather than being a symbol of hope it reminds her of the bells of a boxing match, creating the impression that cancer is a fight to be won.

But she says even when one treatment ends there is always the risk of recurrence or secondary cancer.

The chances of this vary enormously depending on what type of cancer an individual has and at what stage it is diagnosed. But the fact remains only one in two are alive ten years after diagnosis.

As a result, deciding whether to install a bell or not can pose a dilemma for those working in the NHS.

At Royal Berkshire NHS Foundation Trust, Macmillan lead cancer nurse for acute oncology Mark Foulkes says his trust does not use them as they could not reach an agreement.

‘Some patients were keen on getting one, but the clinicians – nurses, radiographers and doctors – had mixed feelings.’

Picture shows Macmillan lead cancer nurse for acute oncology Mark Foulkes, who says his trust, Royal Berkshire NHS Foundation Trust, does not use End of Treatment Bells for cancer patients, and clinicians have mixed feelings about them.
Mark Foulkes Picture: Macmillan

Mr Foulkes, who is also a board member of the UK Oncology Nursing Society, says while patients with more straightforward treatments might find the idea of a specific end point ‘rewarding and positive’, there will be plenty more where this is not the case.

Even 'successful' patients can find it difficult

The most obvious example is palliative care patients, he says. But even when treatment is ‘successful’ patients can find it difficult as they may feel abandoned or worry about how they will adjust to being a cancer survivor.

‘On balance, I think the risk of upset, offending or causing anxiety in patients outweighs the potential benefit.’

RCN cancer and breast care forum vice chair Nikki Morris agrees there is a fine line to tread.

‘The bell is a sign of hope – and that can be important for cancer patients who may be going through some pretty gruelling treatment.'

'But we need to recognise the importance of choice. For some the idea of ringing the bell in such a public manner can be distressing. We need to make clear that not everyone has to do it.’

She says this should be part of a considerate and compassionate approach to a patient’s feelings.

‘As nurses we have to make sure we are attuned to the different emotions patients go through. There are times of hope and times of despair, and we should not try to impose on people the idea of what is the right way to feel.’

‘On balance, the risk of upset, offending or causing anxiety in patients outweighs the potential benefit’

Mark Foulkes, Macmillan lead cancer nurse for acute oncology

She also says it is important not to lose sight of the wider issues patients face when it comes to emotions and well-being – and in particular ensuring patients get psychological support during treatment if they need it.

‘It is a widely recognised part of cancer care, but access to it can be a little patchy. My other concern is whether we are identifying all those who need support.

‘Cancer staff are increasingly busy and that means we may not always have time to spot the signs and carry out full assessments.’

It is a point echoed by Macmillan Cancer Support, which has campaigned for better mental health support and post-treatment recovery help.

Macmillan specialist adviser for treatment and recovery Dany Bell says: ‘The NHS Long Term Plan promised to provide personalised care for every person diagnosed with cancer, but this ambition is still a long way from being achieved.’

5

years since first end of treatment bell was introduced

However, she believes the bell still has a place. ‘Every cancer diagnosis is unique. When it comes to acknowledging milestones during treatment some will want to celebrate with an end of treatment bell and others may choose not to. It should be up to that individual if, and how, they acknowledge it.’

Striking a balance

How then can a balance be struck? The North West Cancer Centre at Altnagelvin Area Hospital in Derry/Londonderry, which is run by Northern Ireland's Western Trust, believes it has found the answer.

It introduced a bell earlier this year donated by a nurse from England whose grandfather was undergoing chemotherapy treatment.

'There are times of hope and times of despair, and we should not try to impose on patients the idea of what is the right way to feel’

Nikki Morris, RCN cancer and breast care forum vice-chair

Western Trust Macmillan lead nurse Lesley Mitchell says the centre ‘thought long and hard’ about where to place the bell.

‘We were mindful of people going through chemotherapy or at the end of life who may never get to ring it.’

Ringing the end of treatment ball can be a poignant moment

154

NHS cancer units have end of treatment bells

In the end it was decided to place it in a private waiting area in radiotherapy where the noise can largely be confined.

She says having it on the radiotherapy side of the unit was also seen as important as chemotherapy can be used in palliative care.

The decision seems to be working out. ‘The first person to ring it was one of our cancer nurses,' she adds. 'It was very poignant. She said it was a nice thing – an important milestone to mark. We are keeping it under review. If we get complaints we will act.’

Other ways to mark end of treatment

But she says that in the entire debate about the bell it should not be forgotten that there are many different ways to mark the end of treatment.

‘The most common is people bringing in cakes and buns and sharing them with staff. They love that here. But there are other ways too. We had someone who made T-shirts marking the end of their treatment with the date on.

‘That is not for everyone. Some do it privately. Everyone is different – and we need to accommodate that.’

‘My treatment is done, this course is run and I'm on my way’

Felix Brown was diagnosed with acute lymphoblastic leukaemia in January 2016. He was ten years old at the time.

His treatment involved lumbar punctures, steroids and chemotherapy, leading to weight gain, personality change, sickness and hair loss.

After more than three years he was finally able to ring the end of treatment bell at the Piam Brown unit at University Hospital Southampton NHS Foundation Trust in spring 2019.

He marked the moment by reading out the words inscribed alongside the bell: ‘My treatment is done, this course is run and I’m on my way.’ His parents and two siblings looked on and took pictures.

His mother Kerry says it meant a lot to all of them to be able to mark the moment. ‘It was phenomenal. It was a long, long arduous process – 1,184 days. He faced all of it with such positivity. I never thought it would come.’

Mother who brought the bell to the NHS

The use of end of treatment bells in the NHS was inspired by a mother whose daughter went to the US for treatment.

Tracey Payton set up the End of Treatment Bells charity after her daughter, Emma, rang a bell following proton beam therapy in Oklahoma.

Emma was diagnosed with the rare soft tissue cancer alveolar rhabdomyosarcoma in September 2013, when she was eight years old.

She underwent months of chemotherapy and surgery at Royal Manchester Children’s Hospital along with NHS-funded proton beam therapy in the US.

The Oklahoma clinic had a brass bell that had been provided by the family of a patient who had been treated there, and everyone could ring it at the end of their treatment.

When the family returned to Manchester for Emma’s chemotherapy they showed the staff a video of her ringing the bell, and they decided to introduce one on their cancer ward.

Popularity of end of treatment bells has increased

Emma was the first to ring the bell, in April 2014, after her final chemotherapy session.

The family then decided to set up the charity and started raising money to pay for more bells.

But as their popularity has increased there have been cases of individual patients funding the installation of bells themselves, and requests from abroad for them too.

It has meant that what started out at one site has quickly expanded. In total 265 bells have been installed across the world with the help of the charity, including 20 in special care baby units.

The charity’s Facebook page has grown in popularity too, becoming a forum for families to share their stories of treatment and survival.


Nick Evans is a health writer

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