A Diary of A Mesowarrior and #Mesothelioma Our Liz Has A Great Interview in The Nurse Standard

Liz Darlison and I go back to 2008 when I met her at the Mesothelioma UK Patient and Carers day at the Novetel Hotel at St Panceas where she asked me to talk about my story of Mesothelioma and we have been friends since then.

When ever she wants me to help with any talk or sorting surveys and quieries of Mesothelioma Warriors I do. We have met at many Conferences with all the nurses who have become great friends as well. Well it has been 7 years now.

My most recent meet up was at IMIG where Mesothelioma UK held the Patient carers Congference


We had a boogie though it wasnt all serious.

She Adores Ray as well and they get on so well.

Ray and I wrote books and we dedicated the money to Mesothelioma UK as it is a charity.

As they say on their web site

We feature all our ‘Fab Fundraisers’ in this section and if you want inspiration this is the place to come. We have runners, we have walkers, we have cyclists, we have skydivers, we have climbers, we have triathlonists, we have raffles, tombolas, coffee mornings, cake sales, Spring, Summer and Winter Ball organisers, the list  is endless but without your support Mesothelioma UK could not continue to do the vital work we do for patients, their families and health care professionals. Don’t let age get in the way our fundraisers start from 3 to 90 years old… So please let us know about your fundraising aspirations and challenges it doesn’t matter how big or small your event, every individual one is so important to us and we will support you with our fantastic fundraising packs, our good cheer and best wishes.

Contact Jill Lemon Fundraising & Marketing Manager on 0800 169 2409 or emailmesothelioma.uk@uhl-tr.nhs.uk

Lets Do Something Good Today And Support Mesothelioma UK!

I have done this as a guest blog as the article is in a The Nurse Standard.

DUAL ROLE IN MESOTHELIOMA CARE Liz Darlison describes the role of specialist nurses in caring for patients a ected by asbestos

Liz Darlison from Mesothelioma UK interviewed for major feature in the latest edition of Nurse Standard


DUAL ROLE IN MESOTHELIOMA CARE Liz Darlison describes the role of specialist nurses in caring for patients a ected by asbestos Heart disease RCN Wales is hosting an afternoon seminar about red fl ags in heart disease on June 16 in Cardiff. The event aims to expand clinical knowledge about patients with poor cardiovascular health. Topics include a review of the pathophysiology of hypertension, angina and heart failure, and the importance of monitoring for early identify cation of deterioration and to ensure timely intervention. See tinyurl.com/zleq3ls or call 02920 680 713. Cancer The annual childhood cancer conference returns for its third year on June 17 in London. The event offers a chance for parents and researchers to fi nd out about the latest research into childhood cancer, and brings together pediatrics oncology researchers, health professionals, charities and the parents of children affected by childhood cancer. Go to tinyurl.com/ofrvqyq Crisis care Mental health crisis care is the subject of a conference on June 22 in London. Chaired by Jim Symington, from the Mental Health Crisis Concordat implementation team, the day will focus on improving mental health crisis care and delivering a new model of mental health crisis services. There will be a national update on delivering the new Mental Health Taskforce recommendations on crisis services, and progress against NHS England’s commitments. University Hospital Bristol NHS Trust senior nurse in liaison psychiatry Selena Williams and NHS England deputy head of mental health Sarah Khan are among the speakers. See tinyurl.com/gtawpdg NOTICE BOARD 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. Patient helpline 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 benefi ts 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 fi ve-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 CAREERS incidence estimated to rise for some years yet – despite asbestos regulation – Ms Darlison says she has plenty more to do. ‘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’ NS By Catharine Sadler, freelance journalist

Source http://journals.rcni.com/doi/pdfplus/10.7748/ns.30.40.64.s48


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