The month of May featured International Nurses’ Day – a celebration of the contributions and sacrifices made by nurses in the UK and around the world.
Nurses’ Day is also an opportunity to raise awareness about the vital work nurses carry out on a daily basis, which is why I am delighted to be joined in this latest blog post by Claire Woodley, an Advanced Nurse Practitioner in the Haematology Department at Guy’s and St Thomas’ Hospital in London.
As MPN patients, we know first-hand that haematology nurses play a crucial role in supporting us on our journeys, working closely with our consultants, GPs, and carers, and joining up different aspects of our care.
Their remit when caring for MPN patients includes but is not limited to:
- Gathering patients’ medical histories and reviewing test results.
- Offering advice and guidance on treatments and management of side effects.
- Providing help and support with symptoms such as fatigue, bone pain, itching, and headaches.
- Liaising with consultants about latest blood counts, experiences of medication, and treatment plans.
- Being a sounding for patients’ worries and concerns.
- Advising on lifestyle choices and factors, such as diet and exercise.
- Supporting family, friends, and relatives of patients in and outside of consultations.
For these reasons and many more, nurses are often the closest to what it’s really like to be diagnosed, live with, and manage an MPN.
They can be the first port of call for any issues or questions, available in clinic and at the end of an email or telephone line. If I’ve struggled to get a GP appointment, nurses such as Claire (and Gavin who also featured on the blog last year) have been invaluable in providing me with advice and care very quickly. Knowing there is a support team close by which understands our condition is reassuring as MPNs are not always known about or fully understood.
The chronic nature of MPNs means you’re likely to develop a close relationship with your nurse as they monitor your progress over time. It also means that nurses build up a comprehensive bank of medical knowledge and expertise, caring for hundreds if not thousands of patients over many years and encountering a range of different experiences, challenges, worries, and solutions!
As Claire mentions in our forthcoming Q&A, nurses can also play a key part in clinical trails and research. This includes identifying particular needs or gaps in current practice and understanding, monitoring patient progress, experiences, and outcomes, and helping to analyse data and emerging findings. Their intimate knowledge of living with an MPN, taking a particular treatment, and managing a debilitating symptom can complement and enhance researchers’ and consultants’ understanding of these rare diseases.
Young MPN patients, too, face a number of specific challenges which nurses can comment, help with, and advise on. These include managing a chronic illness at school or university, applying for and working in full or part-time employment, and navigating relationships, fertility, and pregnancy. They might be topics you don’t feel comfortable with your haematologist or questions that might arise once you’re arrived home after your consultation.
Nurses are therefore an essential point of contact for young and older patients alike, and they deserve praise and recognition for the significant work they carry out.
This short introduction sets up my Q&A with Claire who reveals more about her route into the world of haematology, offers a behind-the-scenes glimpse of what she gets up to in a typical day at Guy’s, and details some of the most challenging and rewarding aspects of her role. I hope you enjoy reading our conversation together.
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A: Hello Claire. Thank you so much for taking the time to join us on the young patient blog. Firstly, could you tell us a bit about yourself…
C: Hi Alice. Thank you for inviting me to take part in this important resource for young patients. I am a Haematology Advanced Nurse Practitioner at Guy’s Hospital specialising in myeloproliferative neoplasms. I have been a qualified nurse for over 25 years, and have been at Guy’s for 18 years.
A: What was your journey to becoming a haematology nurse?
C: My final placement as a student nurse was on a haematology ward at my local hospital, I was lucky enough to have an amazing ward sister and colleagues and from that time, my love of haematology developed. I moved to Guy’s Hospital in 2004 and have been fortunate to work in different areas of haematology, including our haematology day unit, haematology clinical trials, MPN clinical nurse specialist and my current role. During this time not only do I continue to work with some incredible colleagues, but I also have the privilege of caring for some inspirational patients.
A: What does a typical day look like for you?
C: My day starts at 08.00, normally checking emails/ correspondence from patients. On Monday, Tuesday and Wednesday I have MPN clinics. These are a mixture of face to face appointments and telephone appointments. In clinic I review patients, medications, prescribe treatments, arrange follow-up tests and appointments. I also review patients attending our day unit. Liaising with other departments and hospitals.
A: How do you and your colleagues help and support MPN patients?
C: I am fortunate to be part of a multidisciplinary team specialized in managing MPN patients. I work closely with our Consultants and two Clinical Nurse Specialists, Susan and Rose. We are there to support patients throughout their journey with an MPN. We are there for patients at every step, educating about their condition, supporting with treatments, symptoms, the psychological, cultural and spiritual consequences of living with an MPN. As a nursing team we are available to patients outside of clinic appointments, and can speak/see to patients as concerns arise.
A: What about young MPN patients? In your experience, do they have any specific or different care needs?
C: I think living with a chronic cancer can be difficult for patients of any age. Living with a cancer that is controlled but not cured can have a significant impact and managing the symptoms can be hard for anyone diagnosed. However, there are some concerns that are more prevalent in our younger patients, including: contraception, fertility, pregnancy, starting university, work, applying for mortgages. Decisions about treatment and starting treatment can be different for younger patients.
A: Are you able to share your thoughts about, or experiences of, helping MPN patients manage living with a chronic disease on a day to day basis?
C: MPNs are lifelong conditions, for me this is about educating patients on their disease, potential symptoms and working with patients to enable them to make decisions about their care. I would encourage patients to reach out to their teams in difficult times and to access the services available to them.
A: You do a mixture of in-person and telephone consultations. What are your thoughts on these two different forms of communication with, and care for, patients?
C: I feel having the option of both approaches to appointments are important.
With COVID, services needed to change very quickly, and telephone consultations were a way for us to review and keep in touch with patients when we were not able to bring them into hospitals. Telephone appointments can be very good for some patients. They can mean that you can have appointments without needing to travel into hospital or take time off from work and are less disruptive to your day. However, I can appreciate for some patients, telephone appointment can be difficult especially if they do not know the person they are speaking with.
For some patients it is also necessary for us to bring them into their appointments as we may need to perform examinations, gain consent for treatments, conduct venesections, and so on. I think it largely depends on patient preference.
A: What are the most challenging and rewarding aspects of your role?
C: I feel very fortunate to have the job that I do, and I enjoy working with MPN patients. In my time working within the field of MPN I have seen so many developments in our understanding and management of these conditions. I was a research nurse managing the first UK trial of the JAK2 Inhibitor Ruxolitinib at Guy’s Hospital, which has had great benefit for patients.
A rewarding part of the job is the relationships that I can develop with patients and their families over time. I have seen marriages, children, grandchildren…
A: Finally, what advice would you give to young MPN patients seen outside of GSTT and looking for support? Are there any resources you’re able to recommend?
C: I would suggest speaking with their local teams or GP to find out what services are available for them locally. Charities like MPN Voice and yourself have a lot of resources for patients living with MPNs.
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Many thanks to Claire for taking the time to participate in this month’s blog post and share her perspective with us.
If you’d like to get in touch with Alice about this topic or any of her blog posts to date, you can contact her by email at: info@mpnvoice.org.uk
If you’d like to be part of the Young Patient Network group on Facebook, you can request to join by clicking this link: www.facebook.com/groups/mpnvoiceyoungpatientnetwork
If you missed the launch of our special MPN Voice Recipe Book, you can purchase a copy on Amazon here: The MPN Voice Recipe Book : Voice, MPN: Amazon.co.uk: Books
