My dual role in mesothelioma care
Be inspired by consultant nurse Liz Darlison, who combines her NHS role with running a charity for those affected by asbestos
Mention the word mesothelioma and many nurses will know of someone whose life has been affected by this increasingly common cancer.
The disease is associated with inhalation of asbestos and the stories of those affected can be shocking, such as this example of a woman whose husband worked in a shipyard: ‘No one knew of the dangers at the time, but I realise now I must have been exposed to breathing in asbestos fibres from his working clothes, which I used to shake out and wash for him.’
Liz Darlison divides her time between posts as mesothelioma consultant nurse at the University Hospitals of Leicester NHS Trust and director of services for Mesothelioma UK, a charity she set up six years ago. She is well aware of such patients’ experiences.
‘This indiscriminate, industrial cancer, caused by a substance whose use in building work was not banned until 1999, has a particularly high burden of patient symptoms and limited treatment options,’ she says.
Acknowledging that any cancer diagnosis is a shock, Ms Darlison believes learning you have mesothelioma is exceptionally difficult.
‘Understandably, some patients and their families feel their exposure to asbestos dust through no fault of their own, many years ago, was unjust. And at this most vulnerable time in their lives, they may also have to struggle to navigate complex legal and benefits systems to secure financial support and compensation.’
Ms Darlison took the first steps to provide extra support for these vulnerable patients when she was working as a lung cancer nurse specialist 14 years ago.
She says: ‘I was being inundated with calls from anxious patients, desperate to learn more about their condition, after the UK’s only mesothelioma nurse specialist (MSN), who was based in Leeds, retired.’
So, with the help of donations and an administrator, Ms Darlison ran a patient helpline from her hospital base until the charity’s launch.
Today, Mesothelioma UK provides patients with impartial information, advice and professional support from its nurse-run helpline and a Citizens Advice mesothelioma benefits and compensation adviser. The charity now funds 13 nurse specialist posts across the UK.
Each nurse specialist has a cancer nursing background and receives additional education in mesothelioma care to ensure they can provide what Ms Darlison describes as ‘highly skilled, autonomous patient care and advocacy.’
Lung cancer nurse specialist Vanessa Beattie, who is deputy chair of the National Lung Cancer Forum for Nurses, says the UK’s lung cancer nurses rely on the specialist support MSNs provide.
‘Knowing our MSN colleagues have the time and extra expertise to help us support our mesothelioma patients is reassuring,’ she says.
In addition to acting as keyworkers, MSNs:
Co-ordinate inpatients’ and outpatients’ continuity of care.
Run regional support groups.
Educate health professionals.
Promote clinical trial availability.
Cover Mesothelioma UK’s five-day patient helpline rota.
Share clinical practice and research information via online social networks.
Participate in the mesothelioma nurse action team’s nationwide meetings and training days.
As an associate and senior nurse lecturer at the Royal Marsden School and de Montfort University in Leicester, Ms Darlison educates, trains and raises public awareness of mesothelioma prevention and patient care wherever she can. But with UK mesothelioma incidence estimated to rise for some years yet – despite asbestos regulation – Ms Darlison says she has plenty more to do.
A cancer originating in mesothelial cells lining the chest and abdomen.
Caused by breathing in or ingesting asbestos dust – a naturally occurring mineral widely used in the construction industry until it was banned in the UK in 1999. The disease can take 15-50 years to develop.
Affects around 2,500 people annually in the UK.
Typically affects men aged between 66-79 who were employed as shipbuilders, carpenters, heating engineers, plumbers and electricians; their relatives might also be affected because of contact with work clothing.
Symptoms include: a cough, shortness of breath, pain, sweating, appetite and weight loss and bloatedness.
‘My vision is for Mesothelioma UK to fund more treatment research, to establish at least 28 NHS integrated MSN posts in the UK and to have a global impact.
‘The UK has the highest incidence of this cancer in the world, but the international picture is poor. Only 50 countries have asbestos bans, with 150 still mining, exporting or using it.
‘As a British nurse, I cannot turn a blind eye to young people’s lives being put at risk in this way.’
Teamwork, donors’ generosity and support from colleagues at Leicester University Hospitals trust, which continues to host Mesothelioma UK, have been the key to the charity’s progress, says Ms Darlison.
‘We have had our low moments. I remember putting the phone down and weeping at my desk because I didn’t think we could get funding. But it all came right through teamwork.
‘We are all Leicester City football supporters here and believe if they can overcome their difficulties, so can we.’
Ms Darlison says the two days each week she spends running an outpatient clinic and liaising closely with physicians on patient follow-up are invaluable.
‘Our charity was established to meet patients’ needs, so it would be impossible for me to stand up and speak on this without maintaining patient contact. My nursing role ensures I continue to learn and remain sensitive to mesothelioma patients’ continuing burden of need’.