M A Adlan, Endocrinologist
Dr Ishrat Khan, Endocrinologist
Dr Kate Gounds, C2 Trainee
Dr LD Premawardhana, Endocrinologist and Senior Lecturer
Sister Julie Scattergood, Outpatients Manager
Carol Thomas, Outpatients Nurse
Aneurin Bevan University Health Board
1% of the UK population take exogenous steroids. Exogenous steroids are the most common cause of Hypothalmic-Pituitary-Adrenal (HPA) axis suppression, leading to adrenal crisis; an adrenal crisis is a medical emergency, with 25% dying as a result.
The project team assessed patient knowledge of the effects of long-term steroid use. Significant gaps in knowledge were highlighted, especially relating to the safety aspects of long-term steroid therapy. This confirms the findings of previous studies from general practice, and hospital settings.
To offer structured education on the safety aspects of long-term steroid therapy, to include group education.
To prevent unnecessary morbidity, mortality and unnecessary attendance to a healthcare facility.
To develop a service that trains outpatient nurses. Once trained, the nurses are able to receive referrals and offer support and education to patients. This includes providing a validated information sheet, steroid card and advice about bracelets or other medical ID jewellery. The nurses also provide education on how to inject intramuscular hydrocortisone in emergency situations and, along with support from Pharmacy, provide hydrocortisone to be kept at home for such emergencies.
To maintain a register for highlighting patients in clinical workstation, to the ambulance service and for audit purposes.
General funding challenges; there is a need for a nursing time to deliver the training, which is time-consuming, requiring rehearsal, revision and group education.
Additional trained nurses are required to cover leave and enable the service to continue.
Patient numbers will be large when the project rolls out to Rheumatology, Respiratory, Gastroenterology and other steroid prescribers as well as endocrine clinics.
There were funding challenges, but as this project was a Bevan Exemplar project, it enabled the funding of 2-3 sessions a week for six months.
The team offered structured education to steroid-dependent patients. The team also took measures to highlight those patients in the clinical workstation and to the ambulance service.
On a voluntary basis, the nurse was able to educate a number of patients as a pilot trial, receiving favorable feedback.
Patients were happy and co-operative to take part.
Although the health board agreed to fund this project in principal, at present they have no funds to offer. As an interim solution, Dr Pemawardhana agreed to fund it from charitable research funds, for the project to continue until funds are available from the health board.
Establish an educational clinic for 2-3 sessions a week, with trained Outpatients Nurses to cover the sessions.
The Outpatients Manager and a lead outpatient nurse will supervise the education sessions.
To continue to seek permanent funding, as the pilot study has demonstrated success.
To maintain a register to highlight patients in the clinical workstation (Steroid-Dependent Patient) and to highlight those patients with their consent to the ambulance service and use the register for audit purposes.
To offer this project as an example to be followed by other healthcare providers.
Part of cohort Bevan Exemplar Projects 2018-19