Jenn wanted to be a nurse from an early age. After qualifying in 1993, her career took a respiratory focus. Now working with the Pleural Service, she specialises in conditions affecting the pleura (the lining of the chest wall and lungs). It is through this experience that she began supporting people affected by mesothelioma. Joining Mesothelioma UK in 2019, she is a passionate advocate for people affected by mesothelioma throughout the Highlands of Scotland. In this interview she talks about the challenges presented by working over a large geographical area as well as the most rewarding aspects of her job.
“New patients are usually referred to me via GPs, inpatient services or other specialities in NHS Highland. For cases where mesothelioma seems likely, I would arrange to see them in clinic along with a CT scan. Ideally, I like to see my patients face to face, but this can be difficult if they live a distance away. In this case I would arrange a video or phone consultation instead. During this consultation I take the person’s medical history including any previous asbestos exposure. If I see them in person, I can also examine them and perform pleural procedures as required.”
“We don’t have high numbers of cases [in Scotland] but we cover a lot of land space.”
“But my role isn’t just about telling people they have mesothelioma, it also involves providing explanation for all asbestos related diseases. For example, if a patient has pleural plaques, it’s important to make it clear that this doesn’t mean they’re going to go on to have mesothelioma. Awareness of mesothelioma can be high especially in the small communities I work with. If someone has worked on the same job or place as others who have gone on to develop mesothelioma it can be at the forefront of their mind. Regardless of the likely outcome, it is important to be honest and tell them what I think is going on. Occasionally this discussion is with the consultant, but often it’s just me.
“For patients presenting with a large pleural effusion and breathlessness, my priority is always to do something that helps give symptom relief. This often involves diagnostic and therapeutic drainage as part of our pleural service. This can relieve their symptoms while giving time for me to organise further investigations. Sadly, we don’t have all the services on-site so this can mean onward referral to the Glasgow Hospitals. However, we are in the process of setting up a local anaesthetic thoracoscopy (LAT) service in the Highlands which will have a huge impact on our patient experience.”
“Equity of care and striving to ensure the people with mesothelioma I work with receive it, is a very big motivator for me.”
“Once a diagnosis is made then patients are referred to our local oncology service. Our oncologist is also part of the Scottish Mesothelioma Multidisciplinary Team Meeting (MDT). These MDTs provide the opportunity for different professionals with experience in Mesothelioma to come together to discuss cases and share good practice. I attend once a week, whether I have patients or not. This is important because I, like the other Mesothelioma UK CNSs, advocate for my patients at MDTs. What on paper may seem the best for a patient may differ from what the patient has actually told us they want, so our input is crucial to ensure patient focused care.
“Many people with mesothelioma consider taking part in clinical trials. However, many trials are held in England, and even when they are in Scotland, it can still mean a seven or eight hour journey each way. When you’ve got a limited life expectancy, this is a big undertaking, and not one that everyone is willing or indeed fit enough to take.”
“Unless you’ve had the kind of breathlessness that some of my patients have, you don’t appreciate how difficult it can be. [But if] I can put in a long-term chest drain…honestly, it’s like night and day to them.”
“But that’s not to say there aren’t relatively straightforward things we can do that can make a big difference to someone’s quality of life. Unless you’ve had the kind of breathlessness that some of my patients have, you don’t appreciate how difficult it can be. But, if it is caused by a large pleural effusion then I can put in a long-term chest drain and, honestly, it’s like night and day to them. It’s really rewarding because it can buy quality time. Don’t get me wrong, they’re having a bad time, you can’t take that away, but you can make their journey easier.
“I keep in contact with all my patients and offer ongoing support. Being a source of continuity can be really important when people are going through a tumultuous time. How much they engage depends on their individual journey, the support from other services they’ve been referred on to, as well as where they live. But often if I see them first we’ll keep on touch. You’re there to do a job, but there’s always a bit of chat, for example I’m from a farming background, so we might have that in common and talk about that, or maybe they’ve got a dog. These are the things that can help you connect.”
“Often talk centres around what we are doing directly for the family, but actually a lot of what we do is indirect.”
“If someone feels comfortable, they’re more likely to open up and tell you how they feel. I may not be able to stop that person dying but if I can help them feel listened to and supported then I feel I’ve helped make a positive difference. Similarly, signposting to further sources of support like Mesothelioma UK and local asbestos support group is also really important. Meeting (usually virtually) others affected by mesothelioma and sharing experiences can be a real lifeline, not just for those with mesothelioma, but their loved ones as well.
“Often talk centres around what we are doing directly for the family, but actually a lot of what we do is indirect. It’s as much about supporting the patient’s network, whether that’s the person’s relatives or wider clinical team. My role can often be about being the liaison point between all these people and helping to ensure the best care is given as seamlessly as possible.”