My name is Helen, I am Southampton’s first Mesothelioma UK funded Clinical Nurse Specialist based at University Hospital Southampton, providing support and guidance for mesothelioma patients and their families across the south.
My role is to be there for mesothelioma patients from diagnosis right through their journey. Mesothelioma is such a difficult diagnosis. It can come decades after someone was exposed to asbestos. Many people have never heard of it; they can’t say it; then they find out it’s incurable and that there are not many treatment options available, so prognosis is poor. It’s therefore so important that we have specialist Mesothelioma UK nurses who act as a lynchpin for patients and their families.
These patients often have very complex needs and symptoms, and I am there to support them as much or as little as they need. At certain times, everything will be fine, and patients will be living a fairly normal life. But I am their back-up when things aren’t going so well or if they have concerns. They can ring me if they are worried or need advice between clinical appointments or if they just want to talk to a friendly, understanding voice. I work with the local mesothelioma support group HASAG and attend their monthly Patient and Carer Support Group.
I refer patients to them for compensation and benefits advice as without HASAG’s expertise this can be a very complicated process. I also signpost patients to the hospital Macmillan and Maggies’ Centres for support. The holistic side of looking after patients is incredibly important, as well as the medical side.
I also work closely with the palliative care team at the hospital and within the local community who are experts at managing complex symptoms. This ensures that patient’s quality of life is maintained as long as possible. Their teams will also ensure that their end of life wishes and needs are met.
As Mesothelioma UK nurses, we work alongside the research nurses at hospitals running trials and can let patients know when trials are happening and how they may be able to get involved. We also help to update the Mesothelioma UK app with information on new trials at the hospitals where we work and we cover the Mesothelioma UK support line, where patients and their families can call in for advice and support. This is especially important for patients at smaller hospitals where there is no specialist nurse available, so I can advise them about what trials, treatment, and support is out there.
‘’From day one of diagnosis, Helen was an absolute rock for all of us but especially Mum. She simply was Mums lifeline. She scooped Mum up from the start, helping her understand her diagnosis, preparing her for next steps, supporting her with all her appointments, co ordinating professionals and services, visiting Mum in hospital, advising Mum when she suffered with symptoms or went through treatments and consoled her when times were tough.
The Mesothelioma UK specialist nurses are invaluable to mesothelioma patients and their families. Without your charity, Helen would have not been available to us and I cannot even imagine how we would have all managed.’’
Help us be there for more patients
I hope this has given you a glimpse into the vital role we play as Mesothelioma UK Clinical Specialist Nurses. For patients and their families, having access to our support can make an incredible difference during the most challenging times of their lives. None of this would be possible without the generosity of our amazing donors and supporters—thank you.
Right now, there are 30 Mesothelioma UK nurses like me across the UK, but there are still patients who face this devastating disease without access to a specialist nurse by their side. This winter, we launched The Greatest Gift You Can Give Appeal. Every donation brings us closer to ensuring that no patient has to face mesothelioma alone. Your support can help fund more specialist nurses and bring life-changing care to those who need it most.
I love my job, however the day my job no longer exists will be the best day because it means we have got there.
