I am sat with my mum in the Cancer Centre at Guy’s Hospital in London. It is a light and airy building with tall windows and colourful seating areas. Dotted around the walls are large screens which flash every couple of minutes with patients’ names and allocated room numbers. We have just stepped out of the lifts which are particularly memorable because they are filled with sounds of the rainforest; the grey metal doors open and once inside you are immersed in vibrant illustrations of exotic flora and fauna, and atmospheric recordings of birds singing in the canopy as you are swept high into the building.
Although initially a little scary and daunting to be here, it is an impressive and welcoming place, and as an MPN patient, I have come for my biannual appointment with the Teenage and Young Adult (TYA) Clinic. While waiting, we start chatting to the people next to us. A mother and her son who has recently undergone brain surgery. I am humbled by his experience and truthfully, I have never forgotten him. I remember thinking at the time how trivial everyday stresses seemed as I listened to his story. We sit facing each other, two strangers thrown together at the hospital, completing our patient forms and glancing up every so often to check whether our names have been called.
Suddenly ‘Alice’ appears on screen and I make my way down the corridor to the specified room. Here I meet Gavin, the lead cancer nurse in the TYA clinic who keeps in regular contact with me through WhatsApp and is one of my first ports of call if I experience any issues or difficulties. After our consultation, during which I update him on my haematology care and he shares his expert advice on particular concerns, I return to the waiting area for my next appointment.
Only minutes go by before my name flashes up on the screen again and I am directed to a different room. This time I see a dietitian who reviews my diet and offers their verdict on foods to include and avoid. Next, a gynaecologist. Then, a haematologist who is separate to my usual team and asks about my recent blood tests and enquires about my general wellbeing. And finally, a psychologist.
It is a seamless operation and like nothing I have experienced before. In the clinic, you are treated as a whole person and seen, over a single hour, by multiple practitioners with different skills, backgrounds, and expertise.
As MPNs are chronic diseases, which can cause many symptoms over time, this type of rounded, integrated healthcare system feels pertinent because it monitors and co-ordinates care for issues that arise in different parts of the body – whether pertaining to your physical or mental health. Similarly, because MPNs usually present in older age groups, being part of a teenage and young adult clinic feels comforting because you are surrounded by people your own age who might be going through similar life experiences and facing similar questions. Although everyone’s experience is subjective, I feel looked after and grateful to have access to this world-class service.
Then the Covid-19 pandemic hits and the world is turned upside down.
As the country goes into lockdown, in-person TYA appointments are replaced by virtual consultations held on an online platform aptly called ‘AttendAnywhere’. Dialling in for the first time from home, I am taken to a virtual waiting area where I am greeted by the familiar sounds of the rainforest and a soothing, disembodied voice who reassures me “the team knows you are here” and will call when they are ready.
Remarkably, the TYA clinic takes place exactly as it did before, only this time it is all online. I am whisked from one virtual room to the next as I see each member of the team and they check-in with how I am doing since the last clinic. Seeing their faces on screen feels much better than telephone appointments with doctors, where I find it tricky to judge pauses in conversation and get a sense of their facial expressions and body language. Although not quite the same as journeying to Guy’s Hospital for a face-to-face conversation, there is no doubt that virtual appointments are a lifeline during the chaos and uncertainty of the pandemic.
The person who I speak most to during this period is Gavin.
Not limited to speaking only at the twice annual clinic appointments, he sends regular text messages asking how we are and offers to set up a phone call if needed. During a particularly difficult patch when I start to experience a recurrence of migraines and onset of neuropathic pain, Gavin is an invaluable source of support, offering help and guidance, and liaising with my haematology team. When the pandemic and our prolonged isolation in the ‘shielding’ or ‘clinically extremely vulnerable’ group becomes especially tough to manage, he offers wise words and suggestions for new activities to try and share with others. Gavin also becomes an essential point of contact for updates on the vaccines and how, where, and when we are likely to receive them. Getting continuity of care from GPs or other health providers can sometimes be challenging, and having a nurse who knows your disease and symptoms, and can work together with your consultants, is therefore a fantastic and invaluable addition to a care team.
It is for these reasons and more that I am delighted to be joined on the blog this month by Gavin Maynard-Wyatt. I’m thrilled he has agreed to answer a few questions about his role and experiences of caring for young patients, and I hope that our conversation provides an interesting insight into nursing and the vital service that the TYA clinic at Guy’s Hospital provides.
A: Hello Gavin. Thank you so much for taking the time to feature on our new young MPN patient blog. Firstly, could you briefly describe your role and work within the TYA clinic?
G: Hi Alice. I am the Teenage and Young Adult’s (TYA) lead cancer nurse. I support any 16-24 year old (at diagnosis) with cancer and brain tumours. I ensure they are linked in with the TYA clinic and team and help support them throughout diagnosis, treatment and beyond.
A: What does a typical day look like for you?
G: Checking through emails, I like to keep myself up to date with them so that they don’t get out of hand. I check WhatsApp/Text messages. I text my young patients on a regular basis to remind them of the TYA service and ask how they are getting on and if there is anything I can do for them. I usually have a few 1:1 support sessions with my young patients. These have vastly increased since Covid-19 as being able to do video calls has greatly changed the way we can communicate with our patients. Monday is our TYA clinic day so there is always lots of prep needed for this.
A: Why was the TYA clinic set up and how has it evolved over time?
G: Our age range for the TYA service is 16-24. This is an extremely important time in a young person’s life. They are not children anymore but in many cases, not yet fully functioning adults. Many are still trying to find their own direction in life be this identity, sexuality, work, education, relationships etc. The clinic was set up to have a safe environment for these issues to be raised and mutually discussed. Having a cancer as a young person is life changing and the clinic helps open and honest conversations. Over the years the clinic has gained respect throughout the UK and other TYA services have started to develop their own clinics based on ours. When we first started there was myself as the nurse, a psychologist and a doctor. Now we also have Young Lives vs Cancer social workers, a dietitian, fertility consultant and open links with physio/occupational therapists.
A: For haematology patients specifically, how does the clinic add to their standard care?
G: We see all TYAs with any type of cancer. Our service sees all patients as individuals regardless of their diagnosis. Each young person moves around the clinic gaining the expertise from each health worker, therefore it is difficult to narrow this down to just haematology patients and each and every patient we hope feels our whole service adds to their high standard of care.
A: How important is it to offer integrated care (seeing a dietitian, psychologist, gynaecologist etc.) to young patients?
G: This is vital to offer. Our young patients need their care from all aspects to gain a rounded service. We know from much experience that each healthcare worker offers these aspects. We all have our strengths that benefit our young people. At our post clinic meetings when we discuss the patients we have all seen it always surprises me how each healthcare worker has found out a different concern or worry and collectively as a team we can then address these which ensures trust for our patients.
A: How do you and your colleagues support young people specifically with MPNs?
G: We as a team recognise that having a MPN as a young person can dramatically change lives. Their symptoms can be difficult to manage on a daily basis such as itching, headaches, tiredness etc. Having a cancer that will be controlled but not cured has a massive impact on the young person, so we ensure we offer ongoing psychology assessments through our clinics and then further sessions if required. I check in with our MPN patients on a regular basis to offer 1:1 support sessions and these are utilized with great success and we also offer TYA events where our young people can get together for a social activity.
A: Are you able to share any thoughts or experiences of helping MPN patients manage living with a chronic disease or come to terms with a cancer diagnosis at a young age?
G: I would say the biggest help is listening to the young person. Acknowledge that you have heard what they have said. Living with the symptoms of MPN can be very difficult. MPN has no external signs of cancer like hair loss and may only be treated with aspirin which I have heard our MPN patients compare themselves to others who have needed the likes of chemotherapy/radiotherapy. As a team we encouraged our TYAs not to compare themselves to each other and that each cancer diagnosis is individual and as important and relevant as any. MPN patients have to deal with a lifelong condition, so it is very important to keep checking in and reminding them of each aspect of the service that we provide.
A: How effective is it communicating with young patients via texts and WhatsApp as opposed to emails and letters?
G: Emails and letters can be overlooked. Young patients need to actively open apps to access emails, but a WhatsApp/Text comes straight through to their phone. We have done patient satisfaction surveys that have asked how they evaluate the messages, and it has always been rated very high. Our TYAs like the texts as it shows someone is caring about them even if they aren’t actually with them. They feel secure in the fact that someone is checking in with them and that they haven’t been forgotten. They are also able to reply in a timely fashion even if out with their family and friends.
A: What effect has the Covid-19 pandemic had on your work and the patients in your care?
G: Covid-19 was a dreadful thing to happen and so quickly changed what we did. We had to change the way we worked within a few days. We went from a face to face clinic to virtual within days. This took effective communication with our young patients to ensure that they knew we were still there for all the support they required. Being able to now provide video calls has greatly increased my workload and I now have more 1:1 support sessions than ever. Now that we are almost back to normal, the video calls haven’t decreased and are still very popular and this is fantastic as the best part of my job is talking with the young people be this via face to face, telephone or video calls.
A: Do you think the rise of virtual appointments has helped or hindered patient care? And do you see them continuing in the future?
G: This is a grey area. For the majority of my patients the virtual appointments enabled us to continue a vital service through a very worrying time. For some, virtual is now the way they want to continue their support, but for others, they struggled with only virtual as they preferred the face to face care. As a team who value the thoughts of our young people we now offer a hybrid clinic. Most are now face to face, but the last Monday of the month is a virtual one. My 1:1 support sessions will continue to be both face to face and virtual depending on the patient’s preference.
A: Where do you see nursing and outpatient support going in the next few years?
G: From a TYA outpatient support point of view, I am hoping that we continue as we are doing. Offering a hybrid method of delivering the care and support that we provide. Nursing is continuously moving forward. Nurses are experts in their fields, mine being the care of teenage and young adults. I work with amazing nurses as my role needs to link in with many cancer nurse specialists. Many clinics are becoming nurse led and more and more nurses are taking on skills that were previously more doctor orientated. I am very proud to be a nurse and with each new year the nursing profession is producing amazing nurses with passion and drive to excel in their jobs.
A: What advice would you give to young MPN patients who are seen outside of Guy’s and St Thomas’ Hospital and are looking for support? Are there any resources you are able to recommend or direct them towards?
G: Ask their GP if they are aware of where they can access local support. Teenage Cancer Trust, TeensUnite, Trekstock, and Shine are a few charities that offer TYA cancer support. Young Lives vs Cancer is a fabulous charity that offers family/patient support.
A huge thank you to Gavin for being my third guest on the blog. I hope you enjoyed reading this month’s Q&A and if you have any thoughts or experiences that you’d like to share in response, please don’t hesitate to get in touch: firstname.lastname@example.org
You can read previous editions of the blog, including a conversation with Professor Harrison, here: Young People and MPNs Blog – MPN Voice