RCNi Nurse Awards 2018: ‘Everyone is deserving of the best’
Nurse consultant in cancer Gillian Knowles and her colleagues were awarded the RCNi Cancer Nursing Award 2018 yesterday. Here she reveals the motivation behind the transformative patient group work that she and the team practise for NHS Lothian
‘I cannot describe to you how lost we felt. We were told one day he had cancer that had spread, but they did not know where it had come from. Then we were told to go home and someone would be in touch. Not knowing what was going to happen or who the ‘“somebody” would be who would get in touch while watching your husband become less and less well is awful.’
This painful experience described by a wife whose husband had been diagnosed with aggressive metastatic cancer with an unknown primary site (mCUP), is sadly not uncommon.
These patients have been disadvantaged for many years as they fall outside established multidisciplinary team (MDT) pathways.
Significantly improved care
However, Gillian Knowles and Rachel Haigh have significantly improved the care of this patient group in NHS Lothian. And, for their efforts, they were named winners of the Macmillan-sponsored Cancer Nursing category of the RCNi Nurse Awards 2018 yesterday.
‘No one was taking responsibility for these patients and they deserved equitable care’
The number of patients on the NHS Lothian database with and unknown primary site (mCUP) who have a median survival of only three months
‘When there is a diagnosis of metastatic cancer from a known primary site, the patient is referred to a specialist clinic where they will undergo predictable investigations and targets,’ says nurse consultant in cancer Ms Knowles.
‘There is a clear path to follow with the MDT. There will be a referral to oncology or palliative care. It is a bad diagnosis – but a good pathway.
‘When the primary cancer is not known, the patients can have aggressive disease, but they present to any department or specialty with the largest proportion through the emergency department. They had a bad diagnosis and a bad pathway.
‘Or sometimes the patients were being worked up to find the primary tumour and they are dying. This is not on. No one was taking responsibility for these patients and they deserved equitable care.’
Watch: RCNi Nurse Awards 2018 Cancer Nursing winner Gillian Knowles describes her winning project
Commitment to developing a new service
Working with medical oncologist Sally Clive, the nurses committed to developing a new service for mCUP patients.
‘It is about the core values of nursing – everyone is deserving of the best,’ says Ms Knowles. ‘We wanted to give these patients the best care regardless of their prognosis.
‘We can’t always fix it, but we can make it better for people’
of deaths are at home or in a hospice – above the national average
Communication is the nurses’ main intervention. ‘Our advanced communication skills enable us to have difficult, honest and realistic conversations with people and families,’ says Ms Knowles.
Their database of more than 800 patients shows people with mCUP have a median survival of only three months. Half are not fit for any treatment, and just 20% are fit for chemotherapy.
As Ms Knowles says: ‘We support each other and colleagues in decision-making – we can’t always fix it, but we can make it better for people.’
First in Scotland
The service, the first of its kind in Scotland, has reduced inpatient stays from 12 days to six and is now preventing unnecessary admissions.
‘Limiting the time these patients spend in hospital is important when you consider the time they have left with their families,’ says Ms Knowles.
The reduced number of inpatient stays from the original 12 days
The number of days it has taken patients to receive an oncology review has reduced from 27 to 17 and is continuing to reduce – around 65% of deaths are now at home or hospice, above the national average. There has also been cost savings of £3,619 per person.
Chief nurse research Juliet MacArthur is the strategic lead for nursing research in NHS Lothian. She nominated the team for the Cancer Nursing Award.
‘The team is now providing high-quality, equitable care to patients who historically have been disadvantaged through uncoordinated care pathways’
She says: ‘This mCUP service has gained widespread recognition and now accepts referrals from across the region [Fife, Borders and Dumfries], with timely feedback to the respective teams.
‘They have worked tirelessly to secure additional funding and have recently been successful in doing so.’
‘We have no boundaries and always have the patient in mind and at the centre of it all’
The judges much admired how the team had made an impression in a traditionally neglected patient group. Macmillan chief nurse Karen Roberts says: ‘Gillian has shown incredible leadership and resilience in developing this fantastic service for patients with a diagnosis of cancer of unknown primary.
‘The team is now providing high-quality, equitable care to patients who historically have been disadvantaged through uncoordinated care pathways.’
The nurses are now looking at expanding the service to include direct GP referrals to help an accelerated coordinated pathway and a ‘one-stop’ or ‘minimal stop’ clinic where new patients are seen by specialist, investigations performed rapidly, reviewed by the palliative care team and provided with specialist nurse support throughout.
The judges felt the model was easily transferable throughout the UK.
‘mCUP is still one people find difficult to crack. We have presented at quite a few conferences and I would like to develop a supportive training package for use across the UK,’ says Ms Knowles.
‘We are receiving stories more about feeling supported and having a contact.’
‘Patients know someone is looking out for them and they are not lost in the system’
One story shows how grateful patients are: ‘To say I felt scared and detached during my period in limbo is a bit of an understatement. Thank you for including me in your team,’ they write.
‘In many cancer services, the process does dominate,’ says Ms Knowles. ‘But in this one the nursing team has developed a different approach, making the unknown known.
‘Patients know someone is looking out for them and they are not lost in the system.
‘We have no boundaries and always have the patient in mind and at the centre of it all.’
The RCNi Cancer Nursing Award 2018 is sponsored by Macmillan Cancer Support