Being new to the role of clinical nurse specialist over the last 6 months, I have discovered that the scope of this role is huge. The role of uro-oncology clinical nurse specialists (CNSs) is to support any patients who have a diagnosis of a urological cancer: testicular, prostate, penile, ureteric, kidney or bladder cancer, basically any part of the urological system. In this article I will try to give a snapshot of our role at my hospital and the work we do caring for patients with metastatic disease.
On referral to St Bartholomew's Hospital, the patient will be reviewed by their consultant: Dr Shamash, Dr Alifrangis or Professor Powles depending on the tumour type. Dr Shamash and Dr Alifrangis cover the super-regional Germ Cell Network as we are the tertiary referral service for East Anglia, seeing 200 new patients each year and reviewing just under 300 cases over a year at the multidisciplinary team (MDT) meetings. Both consultants review all the metastatic prostate cancer patients from the five hospitals within Barts Health NHS Trust. Professor Powles receives all the bladder and renal cancer patients from North East London and runs the tertiary referral service for these tumour sites. He runs an extensive number of trials, which enhances their treatment lines.
As CNSs we meet the patient after their first consultation to perform a holistic needs assessment (HNA) and ensure that not only the physical concerns are noted, but also the patient's emotional, social, and financial needs. We take a holistic approach as we understand that a diagnosis of cancer can affect many aspects of a patient's life, and our ultimate aim is to support our patients throughout their cancer pathway, acting as a patient advocate to ensure their needs are heard and met. CNSs are the patient voice, as most MDT meetings do not invite the patient to these discussions. Patients are invited to clinic to discuss their treatment options, when there is more time to discuss options around their individual needs and comorbidities.
Working in North East London is quite a different experience from my previous post at The Royal Marsden Hospital, as the ethnic diversity in this part of London is a lot more varied. We see higher rates of black men with advanced prostate cancer under the care of this service, which means the CNS is relied on to explain and provide further support or tracking of patients who might mistrust NHS staff (Ng et al, 2021). The patient is given a keyworker pack, which includes details of support services offered at St Bartholomew's, and our contact details so they can contact their keyworker if required for questions surrounding their diagnosis or treatment. The patient is informed that they can get in touch at any point if they need support, as these details include our oncology hotline, which has a 24-hour advice line. We signpost patients to the Macmillan and Maggie's cancer centre on site here at St Bartholomew's Hospital for access to benefits advisers and psychologist input if required.
For patients with testicular cancer, the CNS team runs a support group. This was set up by my colleagues Michelle Greenwood and Shievon Smith 3 years ago, and I am personally very proud to be involved. My colleagues set up a private Facebook group after the patients attending the face-to-face support group sessions suggested this would be a helpful resource for them and newly diagnosed patients. There are now 207 members in this group and, in addition to the page, a meeting of the group is hosted once a month—meetings are virtual/online at the moment due to COVID-19—with guest speakers and specific topics around testicular cancer.
As a team we try to avoid using the term ‘men's health’ as this might put lesbian, gay or transgender (LGBTQ) patients off joining support groups or seeking medical advice. We had three abstracts accepted for the British Association of Urological Nursing (BAUN) conference in 2020. Our oral presentation was on ‘LGBTQ+ experiences missed at holistic needs assessments', as we strongly believe in equality and enhancing nursing assessment and care delivery for all patients regardless of gender identity, sexual orientation and ethnic origin, with a focus on understanding that these individuals may have specific needs and support requirements (Kamen et al, 2019).
As well as supporting the consultants in the clinics, we run our own CNS-led clinics focusing on routine follow-ups for transitional cell carcinoma (TCC), renal surveillance and germ cell patients including a small number of ovarian cancer patients. Using clinical assessment skills and autonomous practice, the CNS team complete androgen reviews and testosterone-replacement therapy (TRT). We are mindful of issues around fertility preservation ahead of TRT and complete onco-fertility referrals at diagnosis, luteinising hormone-releasing hormone (LHRH) agonist or antagonist injections, and more. To give one example of the kind of clinical assessment and physical reasoning that might be involved, a patient with a history of cardiac problems will be commenced on an antagonist such as degarelix as it is known to have a lower risk of cardiac events compared with an agonist such as goserelin.
In the CNS-led clinic first cycle counselling is completed for prostate cancer patients starting on androgen-deprivation therapy (ADT) and oral chemotherapy, and kidney cancer patients starting on tyrosine kinase inhibitors (TKIs). We also cover a couple of rare lung cancers and patients with thymomas and angiomyolipomas who are treated with oral chemotherapy or sirolimus/tacrolimus and would otherwise not have their own CNS. We follow-up in the CNS-led clinic 1 or 2 weeks after patients have started TRT, oral chemotherapy, anti-rejection therapy or hormonal therapy, to ensure they are tolerating the treatment.
We work closely with charities—Orchid, Trekstock, CLIC, Kidney Cancer UK, Fight Bladder Cancer UK, Prostate Cancer UK and others—to ensure our patients have the best access to support and have written a number of the patient booklets. We provide patients with literature from these charities to aid their understanding of their disease and help them to understand their treatment options.
Every Monday we participate in the Anglian Germ Cell MDT meeting, which includes cases from St Bartholomew's, UCLH at St Bartholomew's (University College London Hospitals' practice runs from St Bart's Hospital), Guy's and St Thomas' NHS Foundation Trust, Addenbrooke's Hospital in Cambridge, Norfolk and Norwich University Hospitals NHS Foundation Trust, Mid and South Essex NHS Trust (Southend, Basildon and Broomfield Hospitals), and East Suffolk and North Essex (Colchester, Ipswich, Clacton, Halstead, Harwich, Felixstowe and Aldeburgh Hospitals). The last two trusts' cases are presented by Dr Shamash as the network chair, due to their clinical commitments. This meeting is attended by consultants, surgeons, radiographers, pathologists, and the CNS team. The role of the CNS team is to act as the patient advocate in this meeting and ensure the correct follow-up for patients with testicular cancer. Before and after our MDT meeting, our time is spent writing palliative care referrals, signing off our clinic letters, providing toxicity support and telephone triage, alongside email triage and support. Recently we have gained a Macmillan coordinator, Emily, in our team and she chases up blood results and appointments to assist the patient's pathway journey. Emily also invites our patients to complete the Macmillan electronic holistic needs assessment, where they can fill out the template that allows them to raise their concerns. Although we run telephone clinics we do not have access to the sort of virtual clinics that our cardiac nursing colleagues are currently running but we hope to be able to use these services for cancer in the future. Emily or the CNS team then write up a care plan to address the patient's concerns, which is sent to the patient and their GP.
We attend a urology MDT meeting every Tuesday, when we present cases on occasion and ensure the patients are on the correct pathways. At the same time our testicular clinic and CNS list are running. The afternoon is bladder and renal clinic. During this time, we are expected to provide email and telephone support. Wednesday is our admin day when we can send our clinic referrals and first-cycle paperwork to the GPs. I provide discharge MDT CNS cover for the team to fast-track patients home or for rehabilitation. Thursday is clinics all day, starting with bladder and renal, then prostate in the afternoon. We attend ward rounds on Mondays, Wednesdays, Thursdays, and Fridays. On our clinic days student nurses and ward nurses attend for teaching and shadow us. As a team we teach the junior doctors and nursing staff. Friday is admin and ward support.
‘Our ultimate aim is to support our patients throughout their cancer pathway, acting as a patient advocate to ensure their needs are heard and met’
Another important part of our role is research with a focus on improving patient experience, highlighting the value of specialist nursing (Collier et al, 2020). My colleagues Michelle and Shievon have submitted numerous abstracts and papers over the years. I am very proud that my abstract was accepted for a poster presentation at the BAUN meeting in 2020. This poster highlighted the importance of a CNS in testicular cancer, as research suggests over two-thirds of teenage and young adult patients (TYA) affected by cancer have reported suffering from physical or psychological issues as result of their diagnosis (Pugh et al, 2019), highlighting the need for and importance of a CNS.
My future aspirations for the service would be to start a support group for our kidney cancer patients, as many have complex issues as a result of their diagnosis and treatment, and we often find that the majority of our kidney cancer patients are quite young. With regard to aspirations for the future of CNS nursing, I would like to see more trusts offering training CNS roles for nurses like myself who have a specific interest in a certain area of nursing, and want to develop into a band 7 CNS. This is especially important because over 49% of nurses surveyed by Prostate Cancer UK (2019) said they were eligible for retirement or were intending to leave the profession within 10 years. CNS training posts are needed to replace these valuable nurses retiring, so I hope that more trusts will offer band 6 CNS training positions, or else I fear there will be further gaps in an already over-stretched profession within nursing.
Left to right: Daniel Richardson, Jonathan Shamash, Michelle Greenwood and Shievon Smith (front right)