The pituitary gland is the size of a pea. It is located at the base of the brain and controls the function of the body’s hormones. Disorders of the pituitary gland are relatively rare. Symptoms are wideranging and non-specific, which means patients can spend many years attending doctors and attempting to get a diagnosis for their condition.
Pituitary specialist Chris Thompson, who is professor of endocrinology at Beaumont Hospital, has called for increased dialogue between the HSE and healthcare providers for patients with pituitary disorders. “There are significant advances in the recognition and treatment of pituitary disease,” says Thompson. “However, delivery of healthcare to patients is dependent on a structured, multidisciplinary approach and adequately funded services.
“The endocrine and neurological communities have provided manpower, expertise and commitment to set up integrated units in Beaumont/Tallaght hospitals and in Cork but these units have yet to receive the recognition they merit for the supra-regional and national services they provide.
“Other national units, such as transplant services, have protected beds and personnel which allow them to dedicate themselves to the complex work that they do.”
Thompson says this ringfencing of expertise does not occur in Ireland, and pituitary specialists “have to spread their time around other endocrine issues, the considerable problem of diabetes and, increasingly, the demands of acute general medicine and emergency medicine”.
“Our colleagues in other Western countries are able to devote their energies fully towards endocrinology and, in pituitary centres, to pituitary disease.”
He adds that a major difficulty in Ireland is that “there is no mechanism for dialogue with the HSE”.
“The HSE has set up clinical care groups for a number of specialities, such as diabetes, and the dialogue and access to funding is concentrated in these selected specialities.
“In the absence of a clinical care group, there is no opportunity for dialogue, never mind fighting our corner for funding.
“The Irish Endocrine Society has tried unsuccessfully to negotiate the formation of a multidisciplinary clinical care group to represent the interests of patients with endocrine disorders, and the development of dedicated pituitary centres would form part of that agenda.”
Negotiating about new therapies is “particularly important. In Ireland, we have been fortunate in that the HSE has been open to the introduction of specialised, but expensive medication, such as growth hormone for growth hormone deficiency.
“This has been incredibly helpful in delivering optimal care to patients with complex diseases.”
However, the introduction of new drugs such as Plenadrin for steroid deficiency “has been held up in circumstances where the endocrine community has yet to be consulted. It is frustrating to know that useful drugs which provide superior treatment to existing therapies are available – but not available. A formal mechanism for exchange of views with the HSE would be valuable.”
No formal pituitary register
Thompson says between 3,000 and 4,000 people have been diagnosed with pituitary disease in this country, and about 2,000 of them have passed through Beaumont Hospital.
“One of the difficulties we have in looking for resources is the fact that there’s no formal pituitary register. In terms of looking for resources, one of the things we need is a register of patients to get a good idea of what we need.”
Thompson says that one of the frustrating things about the shortcomings in care for pituitary patients is that “once we get the patients, most of them get good results. It doesn’t work for everyone. Some sufferers have to live with a considerable burden of illness. But many people who we treat for pituitary disease can have a good quality of life.”
