The Macmillan nurse who is extending lives with ovarian cancer screening
More women are getting access to vital medication thanks to a nurse-led testing service
More women are getting access to vital medication thanks to a testing service devised by a Macmillan clinical nurse specialist
A Macmillan gynaecology clinical nurse specialist's (CNS's) determination to ensure people with ovarian cancer did not miss out on a life-prolonging drug has helped her to win the Cancer Nursing Award category of the RCNi Nurse Awards 2019, the profession’s top accolade.
When a new drug offering months of extra life to women with ovarian cancer was approved by the National Institute for Health and Care Excellence (NICE), Amy Dugdale was excited about the impact it would have on her patients’ lives.
But the Macmillan gynaecology CNS quickly realised there was a problem – to be eligible for niraparib, patients must have undergone genetic screening for BRCA mutations.
'Positive test results have such a huge effect on patients and their families'
BRCA genes – short for BReast CAncer – are genes that repair DNA. Women who carry an inherited mutation in either of these two genes are at increased risk of developing cancer of the ovary and breast.
What the judges said
The judges were impressed by Amy Dugdale's commitment to patients, her ‘phenomenal passion’ for improving care and felt that the importance of the extra time she was giving patients could not be overstressed.
Awards judge and Macmillan Cancer Support chief nursing officer Karen Roberts said: ‘Ms Dugdale showed incredible tenacity and compassion in identifying a patient group that would benefit from life-extending treatment, and extending her role and skills so that they could be BRCA tested in a timely manner and access these drugs,’ she says.
‘More importantly, she supported these women from the initial difficult conversation to consent and counselling following the results and implications.’
The 2019 RCNi Cancer Nursing Award is sponsored by Macmillan Cancer Support
However, usually only high-risk patients get genetic screening for ovarian cancer, and Ms Dugdale, who works at Airedale Hospital, West Yorkshire, could see that a delay in testing could prevent eligible patients from accessing the medication.
‘Clinical trials show niraparib offers an additional 5.4 months of progression-free survival for women without a BRCA mutation and an additional 15.5 months for women who carry the BRCA1 or BRCA2 mutation,’ says Ms Dugdale.
‘The consultants did not have time to offer a genetic testing service and waiting times at genetic clinics were long, so I decided to see if I could provide the testing myself.
‘I contacted the genetic centres at Leeds and The Royal Marsden to see whether they could signpost me to a nurse led BRCA service. But there wasn’t one anywhere else in the country.’
The right information and support
Undeterred, she set about accessing online counselling training, certification and consent training before developing and adapting the documentation she would need for the clinic.
‘Positive test results have such a huge effect on patients and their families, so it was important I was able to provide them with the counselling they needed and the right information and support,’ Ms Dugdale says.
She also calculated the costs and savings and presented her business case to management and colleagues.
One challenge was overcoming fear of change. A further difficulty was encouraging a focus on niraparib’s benefits and not just the cost. She also had to negotiate clinic space.
‘I found it a personal challenge and asked myself if it was fair to the patient if they received the testing from me and not a genetic centre or consultant. It was important that it was an equivalent service,’ Ms Dugdale adds.
She tested her first patient in April 2018 and her clinic is now a one-stop shop. Within six months of diagnosis, patients with ovarian cancer are invited to discuss the test and its implications, consent to investigation and – as Ms Dugdale is phlebotomy trained – have blood samples taken.
'Amy is already aware of patients' history, their family situation and understands their emotional well-being'
Tests have been backdated to patients diagnosed within the last five years. So far, 32 have received screening and ten have commenced niraparib. Family members are being screened too.
Patient feedback is universally excellent which helped Ms Dugdale persuade colleagues of her clinic’s merits.
‘At first I had a mixed response from the gynaecology oncology nurses, but I demonstrated that it is better for the patients as they know me,’ she says. ‘Patients can talk to me about the results and if they feel they can’t talk to their husbands because of their fears about affecting their families and children. In these circumstances, their relationship with me really helps.’
Educated and empowered
Colleague Sumita Bhuiya, consultant in obstetrics and gynaecology at Airedale Hospital, agrees that the clinic and the nursing role is having an enormous impact.
‘Patients feel educated and empowered and Amy is already aware of their history, their family situation and understands their emotional well-being, which has a positive influence in helping patients make the difficult decision about having the test.’
‘Patients have also appreciated that this is all undertaken in a timely manner in a single appointment, often while still receiving treatment or attending other appointments, and have greatly valued this flexibility.’
The work continues…
Next Ms Dugdale plans to streamline the onward referral process for BRCA-positive patients. She also wants to take on ascitic drainage, acute patient assessment and nurse-led follow up and review clinics.
She adds: ‘I feel incredibly honoured and privileged to win this prestigious award. It is a wonderful feeling knowing that something I thought of as having an effect on patient care has been worthy of recognition.’
- ‘Counselling before the test was thoughtful, supportive and informative. It was arranged for a time that I was already at the hospital, reducing the number of journeys I had to make and was in familiar surroundings. It was comforting that I already knew Amy'
- ‘I was offered a choice of how I got my BRCA test results. This was useful as I sometimes felt unwell from my chemotherapy. I chose by phone and was able to discuss what would happen next and my options. All my questions were answered fully and accurately. This was followed up by a paper copy of my results and what we’d discussed, including onward referrals. It was good for me to have something to look back at’
- ‘I was delighted to have the option of having the test because of its implications for my daughter and granddaughter. We are lucky – speaking to people with cancer treated at other hospitals, they are not offered this service'
- ‘I have two boys and the prospect that I could have the BRCA gene and pass it to one of my children was a heavy weight, but I wanted to know one way or the other’
- ‘The clinic was well informed. There was never any leaning one way or the other to take the BRCA test, nor at any time did I feel rushed. It was the only time throughout my cancer treatment that I cried, due to the ripple effect a positive result would cause. Amy was caring, reassuring and understanding.’