St Bartholomew’s Hospital has become only the second hospital in the UK to be awarded centre of excellence status by an international body that represents people with certain rare tumours.
Founded in 2007 and based in the US, the Pheo Para Alliance aims to raise awareness of, and improve treatment for, pheochromocytoma (pheo) and paraganglioma (para), both potentially cancerous tumours which form around the adrenal glands.
Though rare (around 1 in 5,000 people will develop a pheo or para in their lifetime), certain inherited disorders and changes in particular genes increase people’s risk. They can occur at any age, but mostly affect men and women aged between 30 and 50 years old.
Both pheo and para can produce an excess amount of hormones called catecholamines. This leads to persistent or episodic high blood pressure, severe anxiety, heart palpitations, sweating, headaches, and even stroke or heart attack.
Many patients diagnosed with pheo or para struggle with symptoms for years. A recent survey of patients indicated that 35% of patients received a diagnosis only after four years of symptoms.
Surgery, radiotherapy and chemotherapy are among some of the options used to treat the condition which can be fatal if not detected early.
Centre of excellence status is awarded to centres from across the world which meet the Alliance’s strict criteria for areas such as diagnostics, treatment and clinical experience and education. Patient feedback is also considered.
The St Bartholomew’s team, which is part of the hospital’s endocrine department, were praised for its quality of care, patient information and commitment to research.
Tina, a patient from St Bartholomew’s Hospital, said: “A diagnosis of a pheo or para tumour ca leave you feeling lonely and vulnerable. Right from referral, St Bartholomew's provides a person-centred service by a highly skilled and specialist team with a multidisciplinary approach.
“They leave patients empowered and informed – and, importantly, in control as much as possible.”
Eli Soto, Chair of the Alliance, said: “We are honoured to direct patients to the team at St Bartholomew’s, whose dedication to the patient community and knowledge of the illness were so evident during the application and review process.”
Dr Scott Akker, who leads the service at St Bartholomew’s Hospital, said: ‘It is a privilege to work as part of the large specialist team which focuses on providing first class care in adrenal disease.
“To receive this recognition after a rigorous assessment from the patient perspective is particularly rewarding.”
In April of this year the endocrinology department became the first service of its kind in the world to be awarded the full five stars in an independent review by the European Network for the Study of Adrenal Tumours (ENSAT) in recognition of their work across all aspects of adrenal tumours.
More information about the department can be found on the Barts Health website.
For more information about the Pheo Para Alliance visit www.pheopara.org