The Myeloma Infoline and Ask The Nurse services are fully staffed and are here to answer your questions and concerns and be a listening ear.

You can also visit our dedicated COVID-19 Information Hub for the latest information.

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We are one myeloma community: putting patients first

24th June 2020 // Ellen Watters

For most people, myeloma is a rare and complex cancer that they only become aware of when they or a loved one has been diagnosed.  This can leave patients and families feeling like they’ve got a huge mountain to climb and can cause feelings of overwhelming anxiety, confusion and isolation. This is where our Myeloma Infoline and Ask The Nurse (ATN) services come in.   When you get in touch with us through one of these services, you’re speaking to a member of the Myeloma Information Specialist (MIS) team – myself, Sarah and Kim. We provide tailored information and support to anyone affected by myeloma and related conditions.

We’ve been listening to patients their carers and their extended families for almost 20 years, and we’ve been able to see clearly that connecting with an MIS at Myeloma UK makes a real difference to people, no matter where they may be in their myeloma journey.  We can answer questions, explain complex terms, and be a listening ear to help make people feel less isolated and under pressure. Our services are always confidential, there are no time limits, and we firmly believe that there’s no such thing as a trivial question!  Because we work to the highest industry standards our services are nationally accredited and award winning, and we make sure we keep up to date on the latest research through attending and speaking at external events and conferences.   We also all bring our own expertise, experience and knowledge to help the people who get in touch with us and provide a genuine spread of information and support that means they’re able to take the next steps they need to.

I’m a registered nurse with over 17 years’ experience of working in the services team at Myeloma UK, and one of the charity’s longest serving members of staff. As well as answering telephone calls and emails, my day to day work includes providing training and mentorship to the other Myeloma Information Specialists.  For me, nothing beats helping someone to learn more about this complex blood cancer and get a better understanding of the various treatment options open to them. Myeloma is a very individual cancer and helping patients and families to understand it and live well each day is something I’m passionate about.

Kim, another member of the team, also has a background in nursing that includes expertise in palliative care. Her compassionate nature, her understanding and her wiliness to go above and beyond for everyone who gets in contact makes her a valued member of the MIS team, and someone many of you have been in touch with over the last two years.

Sarah’s experience in the mental health and social care setting, as well as her background in psychology, brings another different perspective to the team. Sarah really understands the significant psychological impact that a diagnosis can bring and how hard it can be to deal with that. She’s always there to listen to and encourage those who are struggling to be kind to themselves, and her wealth of knowledge in this area means that she can always point people in the right direction of additional support when its needed.

Over the recent months, we’ve seen demand for our services increase and we’ve never been more pleased that we’re here to support our myeloma community.  Many of you have had questions about COVID-19 and we hope we’ve been able to answer them, but what’s surprised me is where advice we have traditionally given has taken on a whole new dimension as a result of shielding measures.  We know, for example, that hospital appointments can be a time of concern and fear where patients and their loved ones feel they have more questions than answers. The MIS team often have conversations around preparing for appointments and providing reassurance to patients that their questions are valid, as well as suggesting additional questions that may be useful. Patients have often told us that speaking to an MIS in advance of their appointments has led to more collaborative discussions where they feel they are playing a more central role in decision making.  Now that hospital appointments are less frequent or calls have replaced face to face conversations, we’re finding that those years of experience and learning about what works best are helping us give advice that keeps patients and their healthcare professionals communicating in the best possible way.  It makes us really proud to know that we can bring that unique and very specialised understanding to help everyone manage the pressures of the pandemic in the best possible way they can.

But what really motivates us is the messages we get back from people we’ve been in touch with.  Knowing that we’ve helped at a difficult time or found an answer where there wasn’t one before really makes all the difference to us.  It’s another reason why you’ll see us at Myeloma UK patient and family events such as the Infodays, or at Support Group meetings when it’s possible to do so.  We love meeting everyone, having a chat and hearing what people are concerned about or where they have questions, and the friendly and supportive atmosphere at these events is a great opportunity to make new friends as well as catch up with old ones.

It is an honour and privilege to provide our services to myeloma patients and those with related conditions. If you need information, support and a listening ear, please get in touch with us via the Myeloma Infoline on 0800 980 3332 or the Ask The Nurse service at askthenurse@myeloma.org.uk.

Being there for every step of the journey makes a difference.