University Hospitals Birmingham NHS Foundation Trust (UHB) is now firmly established as one of the top ten centres in the world for liver research, treatment and transplantation.
Providing a service that goes from ‘trial to treatment’, according to Gideon Hirschfield, Professor of Autoimmune Liver Disease and Honorary Transplant Hepatologist, is what makes the Trust unique, placing the importance of clinical research for UHB patients, at the centre of their day-to-day clinical care.
Equally, the Trust stands out because of the appointment of one, almost unique, post, that of an autoimmune liver disease Clinical Nurse Specialist, Jennifer Hayden.
As new guidelines for the treatment of autoimmune liver disease are published in the leading journal for gastroenterology and hepatology, GUT, researchers and clinicians in Birmingham have taken the lead in pushing ahead with new drugs and new treatment standards for patients at specialist autoimmune liver disease clinics, hosted in the UHB Centre for Rare Diseases.
Professor Hirschfield explained: “Until very recently, there was only one drug treatment available for patients with a particular form of liver disease, primary biliary cholangitis (PBC).
“Birmingham was one of the centres involved in clinical trials of a new therapy for patients, as well as a centre of excellence and has been at the forefront of the process to approve the new medicine. This work has collectively contributed to the first new licensed treatment in over 20 years for patients living with PBC.”
The new drug, which helps the estimated one-third of patients who respond inadequately to what was previously the only offer, does not provide a cure but does help patients hopefully live longer and more comfortably. This is part of a portfolio of treatments and research which together make Birmingham a global leader in the area of liver medicine and surgery.
Professor Hirschfield has led on the development of the new PBC treatment guidelines for Europe and the UK, and is working as part of the European Reference Network for Rare Liver Disease – an indication of the excellence in care on offer at the Trust.
Crucial to putting those guidelines in place and providing a quality service for liver patients at UHB is specialist nurse, Jennifer Hayden. Jennifer, the only dedicated specialist nurse in her field in England and Wales, qualified at Birmingham City University in 2013 and went straight on to work at the liver unit at UHB.
In 2016 she took on her current post and has never looked back. “My patients are a lovely group of people to work with and I really enjoy getting to know them and their lives in depth, as well as coordinating their treatment,” she said.
Jennifer works mostly with patients with PBC, who are primarily women, usually in their 40s and 50s, with busy lives and families, struggling to cope with the often difficult symptoms that can accompany the disease.
“I have got younger patients too and some men, but primarily the patient group are women, who I think enjoy having another woman to confide in and talk things through with,” said Jennifer.
She added: “Quite often patients don’t want to ask what they think are ‘stupid’ questions for a consultant, but they will ask me, and of course, there are never any stupid questions.”
While meeting most of her patients on a very regular basis, as the treatment requires, Jennifer also has patients from as far and wide as Manchester and Wales, a tribute to the specialist service UHB provides.
Professor Hirschfield added: “UHB is recognised regionally, nationally, and internationally, as a Beacon Centre for liver treatment. We are very grateful to the on-going vision of the Trust in supporting our work, including a regular multi-disciplinary team meeting about patients being considered for new PBC treatments from across all of the West Midlands.
“Working together with the National Institute for Health Research (NIHR) Birmingham Biomedical Research Centre (BRC), and the University of Birmingham, the combination of clinical trials, treatments and specialist nursing are really changing NHS care for liver patients, for the good.”