‘I can’t remove every obstacle that myeloma patients will face… but I can provide support’

I quickly sense from the caller's tone and how they respond to my questions that they may be struggling with their diagnosis of myeloma – a complex, rare and incurable cancer where patients experience periods of stable disease or remission, followed by relapses where further treatment is required. Most patients believe their medical team have provided the gold standard of care, but this caller feels there has been a missed opportunity to diagnose their myeloma, although everything they describe seems to follow the normal diagnostic procedures. They ask me to repeat every detail whilst they write down my response word-for-word… I get the impression other issues were contributing to their distress.

A previous MRI scan had been taken some time prior to their diagnosis of myeloma. The caller explains that the scan aimed to determine whether they had a plasmacytoma (a localised build-up of abnormal plasma cells). The results from the scan were inconclusive and their doctors made the decision to monitor them regularly. A year later, the caller received a confirmed diagnosis of myeloma following active monitoring but could not shake the thought that something had been missed. As a Myeloma Information Specialist (MIS) at Myeloma UK, I had the opportunity to provide more context to the disease. In essence, even if a plasmacytoma was found and treated, this would not have prevented the advancement of the disease to active myeloma or their need for treatment; patients can develop a plasmacytoma, receive treatment and still progress towards active myeloma.

A natural curiosity

I first encountered psychology when I was seven, receiving a diagnosis of dyslexia from an educational psychologist. Reassessed as a young adult, I had a lengthy conversation with the psychologist. Psychology was already on my radar, but that conversation spurred on my natural curiosity and led me to study psychology. I could see that understanding human behaviour and applying that knowledge to improve the lives of the most vulnerable people in society was the right route for me.

After completing my degree at the University of Limerick and a further MSc in Developmental Psychology at the University of Stirling, I began working in the community. I provided tailored care and support to individuals with a wide range of complex needs. My clients included people with Autistic Spectrum Disorder, ADHD, severe learning difficulties, depression, anxiety, schizophrenia and people with a history of trauma. I had the opportunity to positively impact the people I supported daily, scoping out possible improvements to their care and implementing these changes in collaboration with other staff.

This direct experience of supporting people with complex needs led to my current role in Myeloma UK; a role that is both challenging and extremely rewarding.

Initially, I felt that I may be at a disadvantage compared to the other MIS team members because I had no medical training; the other two MIS are nurses. However, I quickly released my education and experience was of great benefit to the team. My awareness of the impact that traumatic experiences can have on a person, and the complexity of human behaviour, had equipped me with the level of empathy I needed. My research experience, including data collection and designing studies, was useful when I supported changes to the service.

Bridging the gap

Through the Myeloma Infoline and Ask the Nurse email services, I help patients and carers to understand the complexities of myeloma and related diseases, the available treatment options, the complications and symptoms. I help patients to understand the medical information they receive from healthcare professionals. Our services are provided via a freephone number with no time constraints on the call; one of the benefits of our bespoke services.

A large part of my role as an MIS centres on supporting myeloma patients to cope with the psychological and emotional impact of a diagnosis, the disease and ongoing challenges in the daily lives of patients and their families. In myeloma, plasma cells become abnormal, multiply uncontrollably and produce a large amount of a single type of antibody known as a paraprotein, which has no useful function. High levels of paraproteins in the blood can have a devastating impact on the body if they are left untreated. Myeloma can affect the kidneys, levels of haemoglobin (as well as the other components of the blood), cause bone disease that results in fractures and the possibility of spinal cord compression, and affect the immune system, resulting in severe or frequent infections.

I give patients the space and opportunity to discuss their feelings and concerns which helps service users to feel more in control, reassured and less isolated. Patients and family members often tell us that they do not want to burden their healthcare team with questions outside of their consultations or during their appointments. Some patients say they believe their questions are not critical to their team and they simply want to get a 'bit more information'. Patients are empowered to move forward and feel they are more knowledgeable. However, we make it clear to each service user that we are not a substitute for their medical team and would not be able to replace the advice they provide. Instead, we bridge the gap and support patients to be ready for their consultations, providing practical advice and encouraging them to discuss their concerns further with their medical team.

I am acutely aware of how vulnerable our service users are when they contact us, particularly if they are calling us for the first time. Spending the time to explore service users' issues and concerns without 'watching the clock' is vital as we often need to explain complex medical jargon, dig deeper into their concerns, talk them through the vast array of treatment options and clinical trials for myeloma, as well as discuss some of the practical things they may need day to day. By asking open questions, using a calming tone of voice, repeating back what has been said, giving the caller the time and space to talk, and confirming they have understood what we have discussed, we can explore their needs, thoughts and feelings. I don't have the benefit of the full array of non-verbal cues, often helpful in face-to-face support. Instead, I rely on how service users convey their views and thoughts and probe further to get to the heart of their questions and concerns.

Changing needs

Every interaction with a myeloma patient or family member differs, as their needs change throughout their journey. Each caller brings with them their own unique set of circumstances, personality traits and experiences. Patients and families can find it difficult to come to terms with a cancer diagnosis and this becomes more challenging in the presence of other existing conditions, especially in older patients with co-morbidities. These conditions may impact the ability of service users to cope with the disease and at times, limit the available treatment options. Engaging with services users with acute periods of anxiety and distress in response to the diagnosis and changes in their disease course are common. In addition, we frequently engage with service users with pre-existing mental health issues.

So, back to that call… as we continue our discussion, the caller explains they had been struggling with compulsive thoughts and their coping strategies were failing. I immediately think about the need for input from a qualified psychologist, so I approach the subject of returning to their psychologist to discuss their current diagnosis and its impact on their emotional state. 'It's completely understandable that your coping strategies are being tested,' I say; 'your response is a natural reaction to your diagnosis.' I feel able to provide the caller with the support and encouragement they needed, and later find out they were actively reengaging with their psychologist. In my subsequent calls with this patient, I felt they were seeking reassurance at the height of their rumination, but I recognised this during the call and encouraged them to speak with their psychologist again. My background in Psychology, along with a comprehensive training programme at Myeloma UK, felt important in reducing any immediate anxieties or distress this caller had felt.

Moving forward

Patients are acutely aware that their disease will relapse, and further treatment will be required. Discussing the relapse remitting aspects of myeloma can be challenging. The initial call from a patient or family member may be based on the need for clinical information but can quickly lead to discussions around the psychological impact of the disease. The balance between providing reassurance whilst managing the expectations of service users and not downplaying the life-limiting aspects of myeloma can be challenging, but I do not avoid these difficult discussions. At this critical point, I can contribute to their care pathway, help them navigate the complex NHS system, and provide support at a time where their medical team may be unavailable.

In this role, I know I can't remove every obstacle that myeloma patients and their families will face. But if I can provide support to service users during an extremely difficult period in their lives, that feels incredibly rewarding. I have learned the power of giving a person space and time to explore their concerns and anxieties. They are not alone – other service users talk about the same issues. I recognise the power our services play in releasing the overwhelming fears and concerns that our service users experience daily and that I play a role in reducing those fears.

The current Covid-19 pandemic has raised many challenges for myeloma patients as they were asked to shield, had their treatments altered or delayed and needed to adjust to our 'new normal'. As a result, we have witnessed an unprecedented increase in service use. We recently published a paper in the journal Psycho-Oncology that describes how we rose to the challenge of delivering our services during the pandemic and the issues and concerns patients and families raised in response to Covid-19 (see tinyurl.com/3s3tmzpc).

I will always feel passionate about Psychology and look for opportunities to use the knowledge and skills I developed during my degrees. The role of an MIS has provided a unique learning opportunity and experience I would never have expected at the start of my undergraduate degree. Moving forward, I want to develop my knowledge and skills at Myeloma UK and work towards my ambition of becoming a clinical psychologist.

- Sarah Dempsey
Myeloma Information Specialist
[email protected]
www.myeloma.org.uk

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