If you follow MPN Voice on social media, you’ll have seen that the charity has recently announced the first of a series of patients’ forums taking place this year.
In addition to the big ‘Living with MPNs Day’ held annually in London, MPN Voice runs a number of regional forums in different parts of the UK.
This month’s blog post is therefore dedicated to patient forums, outlining what you can expect if you’ve never been to one before and reflecting on my own experiences of attending over the years.
It can be a scary and disorientating time when you’re first diagnosed.
Similarly, if you’re a young patient, it can be a daunting prospect going to an event where you might anticipate meeting very few people who look a similar age to you.
I hope the following discussion will address any concerns or worries you might have and pull back the curtain on what to expect at an MPN Voice patients’ forum.
1. What is a patients’ forum?
Forums are a welcoming place to meet fellow MPN patients, learn more about the disease, treatments, and symptom management, and hear the latest developments in medical research and thinking. Forums usually begin with a short introduction to the charity and are then structured into a series of talks delivered by MPN haematologists, nurses, and patients. These talks offer the chance to hear from local, national, and international MPN specialists, and gain first-hand insights from patients. This ethos of sharing experiences and advice is exemplified in the ‘break out’ sessions, often towards the end of the forum. These roundtable discussions are usually divided into disease type – ‘ET’, ‘PV’ and ‘MF’ – as well as a group for ‘Families, Friends and Carers’. They provide an invaluable opportunity to connect interpersonally with fellow attendees and swap tips, thoughts, and worries. Conversations often continue in the refreshment breaks, which offer additional opportunities to meet and chat over coffee. By offering a mixture of talks and peer-to-peer interactions, forums are an informative and supportive space dedicated to understanding and learning about MPN experiences.
2. Who can attend?
Forums are open to MPN patients together with their families and friends. This stems from a recognition that an MPN diagnosis doesn’t just affect the patient, but has much wider repercussions for the people around them. It can be daunting attending an event on your own, so I’d recommend bringing someone if you’re able to. This doesn’t have to be a partner or family member, it could be a friend or supportive work colleague. It can be challenging trying to take in a large volume of information, particularly if you’re newly diagnosed, and having someone alongside you provides a second pair of eyes and ears. It’s amazing how people take away different things from the same event, so it’s worth bringing someone who you can chat with on the way home. That said, I’ve met plenty of patients who do attend on their own and there are so many friendly faces in the MPN Voice community who will always welcome you with open arms.
3. Talks from haematologists and nurses
MPN Voice was founded on the principle of providing a source of reliable, trustworthy, and medically informed information to patients and their families. The charity has produced an array of pamphlets, leaflets, and booklets (freely available online and at the front desk of a forum!) about the different types of MPN, the various treatments on offer, and symptoms you might be experiencing. The forums build on this collection of information, support, and guidance, and bring it to life through presentations. You can hear from specialists who are leading researchers and clinicians in the MPN field and provide detailed insights into the disease itself, treatment options, and clinical trials. This is complemented by talks from nurses who are sometimes closer to the everyday patient experience and offer an alternative perspective on living with an MPN. They have a tremendous memory bank of patient interactions which can be an invaluable source of practical advice and expertise on taking a particular drug, managing debilitating symptoms, and navigating the health system. Together, these talks give a comprehensive insight into MPNs from a clinical perspective.
4. Talks from patients
Some of my favourite presentations over the years have been from fellow patients. These might be stories of diagnosis or transformation, living with an MPN and managing symptoms, taking a specific medication, experiencing a particular treatment, or having a test like a bone marrow biopsy. It can be difficult standing up in front of a large audience and speaking about such a personal topic, but I am always blown away by how moving and inspirational the patient presentations are. It is reassuring to know that you are not alone on your MPN journey, and that other people, just like you, are treading the same winding and challenging path. By attending many forums over the years, I have also come to realise that although we may share the same disease classification, there is enormous variety in patient experiences. Forums therefore offer an invaluable opportunity to meet fellow patients and find people who are carbon copies of you! I can still remember meeting young women who similarly drank lots of water, experienced visual disturbances, and had unbearably painful periods prior to diagnosis. I have also heard patients speak about the incredible fundraising activities they’ve organised or taken part in, everything from skydiving to a local bake sale. It’s wonderful to see photos of people up and down the country raising money for the charity and spreading awareness about the small but mighty MPN community.
5. Attending a forum as a young MPN patient
You might be thinking, ‘This is all well and good, but I’m not attending a forum as a young patient as no one will look or sound like me’. If that’s you, I can tell you for certain that I’ve been in your shoes. So much of the MPN literature is targeted towards older patients with average age of diagnosis estimated to be 60 and over. However, you might be surprised to learn that it was at my very first forum that I met a fellow young MPN patient and we’ve been friends ever since. This was at the top of Guy’s hospital in a conference room with panoramic views of the London skyline. I had just collected my name tag from the reception desk when I saw a young guy also his 20s arrive fresh from work in his suit. We made a beeline for each other, and he’s been my ‘patient buddy’ for six or so years now. Since then, I’ve met many other young people and although we’re not large in number, we’re an important part of the patient community and regional forums offer a great way of meeting, connecting, and keeping in touch.
That brings my blog post to a close and I hope it’s given a small insight into what you can expect if you do decide to attend a patient forum this year.
The MPN Voice team offer such a warm welcome on arrival that you’ll soon be put at ease and I can guarantee that you’ll come away with at least one new nugget of information.
We are very lucky to be offered these forums and after the height of the pandemic, it’s wonderful to get together again in person. That said, if you’re unable to travel, do keep an eye out for hybrid forums or online themed sessions, which can be equally useful and informative.
Keep your eyes peeled for new dates and locations for forthcoming forums which will be announced shortly, and if you do decide to attend, I hope you find them as interesting and rewarding as me and my family have over the last few years.
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: email@example.com
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