This year, Ellen Watters celebrates her 15 year work anniversary as a Myeloma Information Specialist. For Rare Diseases Day, Ellen shares what her experience has been like working as a nurse and working for Myeloma UK.
Prior to joining Myeloma UK, I worked as a staff nurse in the Royal Infirmary of Edinburgh. I qualified as a Registered General Nurse in 1996 and eventually gained a diploma in cancer and palliative care in 2001. I’ve worked with many patients with different cancers throughout my nursing career and have always felt a great sense of satisfaction if there was anything that I could do that helped patients and their families cope with their situation.
After gaining my diploma in cancer and palliative care, I became a seconded lung cancer specialist and knew from then on that my career would be focussed on caring for cancer patients and their loved ones. In January 2003 I joined Myeloma UK as a Myeloma Information Specialist working on the Freephone helpline service called the Myeloma Infoline, taking over 250 calls per month. I Also work on the sister service called Ask The Nurse Email. These services were made available not long after the charity was set up in 1997, providing Myeloma patients and their loved ones with information, emotional support, practical advice and a listening ear.
I recall my first experience of taking a call on the Infoline and being nervous as I didn’t know what to expect. I was speaking with a newly diagnosed patient who didn’t know what myeloma was and she was extremely frightened. I was able to answer her questions and followed up by sending out some relevant Myeloma UK publications. The call ended with the patient feeling more in control, better informed and less anxious. After my first call, I became more confident in speaking with myeloma patients and their loved ones and made sure I maintained and expanded my knowledge ensuring that the information I gave was accurate and up to date.
Myeloma is a complex cancer and often the first time anyone hears of it is when they or a loved one has been diagnosed. I hear every day on The Infoline that callers have never heard of it before. I have encountered many different calls and many different emails on the Myeloma Infoline and Ask The Nurse Email.
- Newly Diagnosed
These calls can vary greatly. However, callers are often anxious and want to know a little more about what myeloma is, and what treatment is generally recommended. Some newly diagnosed patients have several complications caused by the myeloma and their treatment and care are quite complex incorporating supportive treatment as well as anti-myeloma treatments. It can be a balance to get on top of the myeloma without causing too many other complications such as sickness and fatigue.
Myeloma is generally diagnosed in those aged 65 and over and they are usually retired. However there are younger patients diagnosed and they worry about how the diagnosis and its treatment will impact on their career, current job (will they be able to continue doing the work they do) and on finances – what may they be entitled to and how do they go about applying for benefits.
- Family of a patient
Is myeloma an inherited cancer is a question that often comes up. Recent research shows that there is a slight increase in myeloma for family members but it is not directly inherited like some forms of breast cancer for instance. We have an Infosheet specifically on this which I will send out after such a call.
- Friend of a patient
Friends of myeloma patients often want to know the best way to support a friend that has been diagnosed. What can they do to help? I often say that becoming fully informed is an excellent way to support their friend. That way they can talk knowledgeably on the subject and help their friends formulate a list of relevant questions they can ask their healthcare team at clinic appointments.
- Newly Diagnosed
“My mum has just been diagnosed and is not being given much information by her doctor, what can I do to help?” We would send information and stress that it’s okay to ask questions. Doctors and nurses are used to being asked questions and to repeating anything if they haven’t been clearly understood.
“My partner is in remission and is keen to return to work but they have a very demanding job and I’m concerned it may be too much for them” – this is a common worry for younger fitter patients/carers who are keen to get back to work and to some sense of ‘normality after treatment.
We often get asked about relapse, how to recognise it and what treatments are generally used or available at subsequent relapses. We would offer our relapse Infopack and clarify signs and symptoms to look out for. We also explore various options which would likely be considered in their individual cases but would stress that their doctor is best placed to answer questions on a patient’s individual case.
The Myeloma Infoline, Ask The Nurse Email and PEER (Patient Experience Exchange Resource) are free, quality accredited services appropriate at any point in the myeloma journey. Providing information and support for anyone affected by myeloma is vitally important. Feedback from service users is collated and from this, we recognise the importance of the service we provide to patients and their loved ones. Our post call/email surveys show that service users feel better informed, less isolated, less anxious and in a better position to know what questions to ask of their healthcare team. 100% of callers to the Infoline who answered our Infoline questionnaire said they would use the service again if the need arose.