What the judges said:
Listening and acting on the patient experience of care remains critical to improve care pathways and learn from the patient as an expert. The submission from Guys & St Thomas’ NHS Foundation Trust, Neil McClements and Haemochromatosis UK demonstrates that co-design and working collaboratively with patients can radically alter how safer care is delivered and both promote best practice and share the learning from the patient ‘lived’ experience. The panel were particularly impressed with how the experience of poor care can be transformed into a progressive project with a measurable positive outcome for both patients and staff.
After his complaint about care was upheld by the Parliamentary and Health Services Ombudsman, patient Neil McClements has worked with a trust to establish a new shared protocol for conducting venesection. They are now working together to share their learning in a unique patient-initiated and led programme across the health service.
Neil McClements has haemochromatosis, a chronic condition where the concentration of iron in his blood increases over time. It is treated through venesection: blood is removed from an arm, much as happens when one donates blood. A patient with haemochromatosis or other myeloproliferative disorder has to undergo venesection regularly – it is estimated that up to 500,000 patients require such treatment, many repeatedly.
Neil experienced several instances of poor care while undergoing venesection at a hospital trust and complained. Eventually his complaint was resolved by the Ombudsman, but the process made Neil concerned that a standard, safe protocol for venesection did not seem to exist. He suspected also that nurses were not routinely trained to administer the treatment.
He used the Freedom of Information (FOI) act with trusts across the country to confirm that the majority of hospitals did not have a standard protocol for venesection; further study showed that no such protocol seemed to exist as a standard worldwide.
Together, Haemochromatosis UK and Neil started working with Yvonne Francis, a clinical nurse specialist at Guys and St Thomas’ NHS Foundation Trust, to hold a venesection best practice training day, open to all. More than 120 nurses from the UK came, as well as a few from overseas.
The day enabled clinicians to reflect on their current approaches to venesection, listen to experiences of patients (which are often unheard in busy, budget-stretched hospitals), share, discuss and (sometimes) challenge existing clinical practices.
The outcome was a rich body of feedback to and from clinicians and patients, and the engagement of a couple of dozen clinicians to help develop a shared best practice protocol for venesection. A key finding, for example, was that more than 60% of nurses didn’t weigh blood drawn from a patient – yet the amount of blood drawn is key in-patient management.
The intention is to refine, document and distribute a new protocol based on the learning from the day by working with these engaged clinicians and with the involvement of venesection patients.
The protocol will be peer-reviewed and then distributed, with additional training materials, including video through a new website in early 2019. This will be key to driving adoption, as venesection patients need and receive care in a range of clinical settings (including primary care, acute and private sector).
At the same time, a new forum has been established to allow practitioners to share learning and experiences about venesection, again developing and informing best practice.
While it is early to claim an improvement in patient safety, it is clear that specifying and adopting standard best practice, with the engagement of patients and with the involvement of nurses in this country and around the world will necessarily reduce inconsistency of care and reduce the possibility of poor or uninformed practice leading to patient harm.
And, as a patient-led initiative, driven by learning from harm and the engagement of clinicians to make a significant procedure safer, this project has been an outstanding example of the kind of improvement that Patient Safety Learning is seeking to make. We are delighted that they are one of our award-winners.
Update from Neil McClements (April 2019):
Haemochromatosis UK ran a second Venesection Best Practice Study Day in April 2019. Over 80 nurses attended to provide their feedback and to help refine the best practice protocol. In collaboration with Gerri Mortimore, lecturer in Advanced Practice Nursing Care at the University of Derby, the protocol has been updated to include the latest best practice. In partnership with the Royal College of Nursing (RCN), the protocol is under clinical review with a view to it being adopted by the RCN as its best practice protocol for not just haemochromatosis but also other conditions requiring venesection.