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‘Liz’s dogged determination stood out’

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Struck by the difficulties patients with mesothelioma face obtaining care, Liz Darlison was spurred into action. Louise Hunt finds out how her work earned her an NT Award

Liz Darlison’s pioneering work in developing a national resource centre for patients who have a rare form of cancer won her an NT Award in the Cancer Nurse Leader of the Year category in November of last year.

The accolade, which is sponsored by the Royal Marsden School of Nursing and Rehabilitation, celebrates her achievements in her ongoing drive to support those patients who have mesothelioma – a terminal malignancy in the chest or abdominal walls that is mainly caused by exposure to asbestos.

‘It’s a very aggressive cancer and there is no treatment for it. Added to that is the injustice of it all,’ Liz explains.

There are currently around 2,000 cases of mesothelioma a year in Britain. Its incidence, however, is likely to peak over the next five years owing to an approximate latency of 30 years.

Although importation of the most hazardous types of asbestos was banned in 1985, those people who were heavily exposed to it at the height of its use in the 1970s – particularly young male industrial workers – may only now be experiencing symptoms.

‘Asbestos was used by the shipload in this country in buildings and transport systems,’ says Liz. ‘Its legacy will be here for a long time. Mesothelioma is such a consuming disease and is probably avoidable. There is also variation around the country in access to [healthcare] experts. Because it is rare there are only ever going to be pockets of expertise.’

It was this inequity of clinical support that spurred her on to become the first nurse consultant in the condition (there are now two others in Kent and Papworth) and to set up the first national resource centre – Mesothelioma UK.

Liz first came into contact with the disease as a lung cancer nurse specialist at University Hospitals of Leicester NHS Trust. Although she saw relatively few patients with mesothelioma, she developed a keen interest in the broader impact of the condition because it became clear that those patients often did not know who else to turn to for advice.

‘As specialist nurses, we are gatekeepers of information. Because of their plight and the injustice of the disease, patients are entitled to extra benefits and compensation. If we are really going to address these patients’ needs, clinicians have got to understand the financial and legal aspects, such as whether patients can pursue civil cases.

‘We also have the responsibility to warn patients and carers that this is an industrial disease and there will be a coroner’s inquest and postmortem – otherwise it can come as a dreadful shock when police officers turn up at the door. It can be an added insult to relatives,’ she says.

Liz honed her expertise by spending time learning from Mavis Robinson, a nurse who is now retired but had set up the UK’s first mesothelioma telephone helpline in Leeds. ‘Mavis was
an invaluable resource. Her knowledge about every aspect of the disease was endless and she encouraged me to develop the mesothelioma information service she had started,’ she says.

At the same time, Leicester was chosen as one of nine pilots sites charged with modernising cancer care under the government’s Cancer Services Collaborative. Some of Liz’s major achievements that occurred during this time included introducing the first lung cancer tracker roles. These took on the administration and coordination aspect of lung cancer services, freeing up specialist nurses so that they could deliver more personalised care. The contacts that she formed with other specialists on the Cancer Services Collaborative and fellow members of the National Lung Cancer Forum for Nurses proved invaluable in setting up Mesothelioma UK.

The centre, based at Leicester’s Glenfield Hospital, was established in 2004 with the help of a £200,000 Macmillan grant and support from University Hospitals of Leicester
NHS Trust.

Liz’s work at both the trust and with Mesothelioma UK involves three levels of patient contact. As consultant nurse she sees all of Leicestershire’s patients who have mesothelioma (approximately 20–30 a year) and helps to ensure that they receive adequate support in order to give them the best possible quality of life throughout the disease trajectory, from diagnosis to palliative care. Often support for their carers is also included.

In a combination of her consultant and Mesothelioma UK work, she sees patients from around Britain who have been referred by GPs or lung cancer teams, at a fortnightly clinic. Here they are given a holistic assessment carried out by Liz and they are seen by a surgeon. ‘I make sure they are in touch with local support and specialist nurses and are aware of all
their benefit entitlements. I also write to the local specialist nurse to help with continuity,’ she says.

The Mesothelioma UK resource centre, which is staffed by herself and an administrator, provides support through a telephone helpline and a website. The helpline receives around 950 calls every year, while the website offers the latest clinical news on the condition as well as advice from expert clinicians. Both of these services are aimed at patients, carers and health professionals.

‘The set-up means I get a really good feel for what’s happening locally and around the country. It’s a perfect situation from a nursing point of view,’ Liz enthuses.

And she says the resource centre is proving a real lifeline for people who are struggling to obtain expert advice at a local level. ‘I had one call today from a lady diagnosed six months ago, who said her practice nurse had not seen a mesothelioma case before. She said she had felt like a freak.

‘Just being able to talk to someone who is so engrossed in the disease and who can unpick any concerns does make a huge difference. When you are diagnosed with something rare you still have all the same concerns as if it were something that is more common – the not knowing just compounds the fear.’

Despite the harrowing impact of the disease on patients, Liz says she finds the emotional side of the job the most rewarding aspect.

‘I am working with some of the most vulnerable patients you will ever meet. There is huge satisfaction in being able to salvage some quality of life for them. Yes there is no cure but it is about giving them the opportunity to develop skills and expertise to help themselves.’

Commenting on Liz’s achievements, NT Awards judge and assistant chief nurse at the Royal Marsden Sara Lister said:

‘Overall we were impressed by Liz’s passion and dedication and how, in a very practical way, she has made a difference to the lives of her patients and their
carers. It was her dogged determination that stood out – she saw a need and she made it happen’.

Looking to the future, one key aim of Mesothelioma UK is to strengthen the nationwide expertise that is needed to help patients obtain the care they need locally, and one of Liz’s next major tasks is to develop a network of specialist nurses for the disease. Each cancer network has already nominated a link nurse for mesothelioma and Liz will lead this group
of specialists.

‘It will be so refreshing to have a ready-made group of senior nurses to call on for support,’ she says. ‘It may be a blueprint for other rare cancers if we can prove it can standardise services.’

How Liz improved care for patients with mesothelioma

Developed contacts with lung cancer specialist nurses via a national forum and the Cancer Services Collaborative and involved these experts in a national resource centre

Compiled a database of specialist nurses so that patients using Mesothelioma UK services could be referred to local services for continuity of support

Ensured that lung cancer teams and specialist nurses were aware of the national resource centre

Stayed abreast of latest clinical developments in the disease, as well as government entitlements for financial support

Gained the trust of patients by providing good, impartial information to empower them as individuals

Put patients in touch with other patients and support groups

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