My Background

I started my career as a registered nurse in the complex, dynamic and fascinating specialist field of haematology - and since qualifying I have never looked back! Due to the complexity of haematological disorders, I had an intense desire to learn as much as I could about my patients pathophysiology, symptoms and treatment modality. This was achieved through a chemotherapy administration course and a free-standing haemato-oncology and hematopoietic stem cell transplant (HSCT) course, as well as a lot of self-directed study. I was always sharing what I had learned with my coworkers and soon realised how much I valued these informal educational encounters; I realised whatever nursing pathway I followed, teaching would be an important part of my role. I knew that clinically-focused education (focusing on improved patient outcomes) aligned best with my core nursing values, so the Clinical Nurse Specialist (CNS) role was the perfect pathway for me to follow. I first became a CNS in November 2017 as a Bone Marrow Transplant (BMT) CNS, and moved into the disease-specific role of the Aplastic Anaemia (AA) and Bone Marrow Failure (BMF) CNS in June 2018, which I currently hold now.

AA and BMF are very complex rare conditions, requiring the input of highly specialised caregivers who help to educate fellow staff, patients and their families. This sharing of knowledge is integral to my role and is one of the main reasons it has always appealed to me; I fulfil my desire to teach on a daily basis.

 My Day

I start my day as many do: logging on to my computer, dealing with urgent emails and checking my answering machine. All the patients I see are given my direct contact information and my first task is managing any urgent matters that require my immediate attention. I have a patient due to start immunosuppressive treatment (IST) today with Anti-thymocyte globulin(ATG) which is an infusion of horse-derived antibodies against human T-Cells. I will need to see them later in the day to coach them through this treatment trajectory. However, today is Monday, so I first have to attend the Myeloid Clinic which runs twice weekly. This is where we see patients in our outpatient setting, the clinics have a mix of patients with haematological malignancies such as leukaemia, myelodysplastic syndromes (MDS) and myeloproliferative neoplasms  as well as patients with bone marrow failure disorders such as AA, Constitutional BMF’s, Paroxysmal nocturnal hemoglobinuria (PNH) and telomeropathies. Recently I have been involved in looking at our clinic profile and the biggest group of patients we see are BMF patients, so I’m often very busy in clinic. My focus is usually on new patients who have been referred to our specialist centre.

During clinic, I sit in on a consultation with a patient who has pancytopenia and a suspected diagnosis of either AA or hypoplastic MDS. After the consultation, I talk through what was discussed with my patient and clarify anything they are unclear of. I also take them into our day unit to take a  plethora of blood samples which include routine tests, more specialised tests for things like telomere length, myeloid and bone marrow failure gene panels as well as tissue-typing bloods for a potential HSCT. I have 3 new patients today so once I have guided them through clinic, I review my other patients currently in the day unit; these other patients have come in so we can check their progression post ATG treatment and decide if they require any blood products, electrolyte replacements or other supportive therapies. After this, I can leave the clinic and have my lunch.

I continue replying to emails and queries as I eat my lunch. After finishing, I go to the ward to see a patient in his early twenties who is beginning his IST with ATG and ciclosporin. I spend an hour with him explaining how the treatment is received, potential side effects and the follow-up care required once he is discharged. IST does not generate immediate or imminent results and can take up to 3 - 6 months before we see a response. Whilst we await improvement patients can be heavily dependant on blood products, requiring twice-a-week platelet transfusions and blood transfusions every 1 - 2 weeks. Patients often need a lot of emotional support from me during this time; only around 70% (+/- 10%) of patients will respond to this treatment, so the initial waiting period is often fraught with anxiety and uncertainty. I also need to give a lot of practical advice about managing infection risk and point people to sources of financial aid, as most people are unable to work during this time.

 Reliable information is so important!

The education of patients, partners and carers is becoming increasingly complex. Information and knowledge can empower patients but it is very important this comes from reputable sources. The widespread use of the internet can result in patients receiving huge amounts of conflicting and confusing data. I spend much of my time helping patients negotiate their way through the maze of information. Some patients can get easily overloaded with information whilst others prefer to know as much as possible, so I have to tailor required information to their individual needs.

I return to my office and review blood results from the patients I saw in the morning. I am often asked to email results directly to individual patients; this can take a fair bit of time as some degree of explanation or summary of their current blood trends is usually needed. I also book patients into the day unit who require any supportive treatments based on their blood results and make sure everyone has a follow-up plan in place. One final check of emails and it’s time for me to go home. Managing such a complex group of patients can be challenging but is ultimately very rewarding.

On my walk home I reflect on my working day and realise how lucky I am to be in a vocation I love, exercising my passion for high quality patient care and sharing my knowledge with patients, families and professional caregivers alike.

Blog by Simon