Continuity of care is important
“I want to see the consultant” is, in our experience, often the most
practical way for patients to state that they want continuity of care and
a doctor-patient relationship based on trust. The most frequent complaint
we hear from our members is that, on their six-monthly or annual
outpatients check-ups, they have seen four different registrars/trainees
on four consecutive visits, with the consultant’s experience or guidance
an unspoken absence.
Autoimmune adrenal failure (Addison’s) is a rare condition which
brings acute steroid dependency, usually accompanied by one or more
associated autoimmune conditions. Best estimates indicate that there are
less than 8,500 cases of diagnosed Addison’s across the UK, of whom
perhaps 700 per annum can be anticipated to need acute, emergency
treatment to prevent a potentially-fatal adrenal crisis.
The management of Addison’s requires ongoing monitoring and, over time,
changes in the medication balance are often required. Such changes may
arise due to complications of ageing or due to the development of one or
more associated autoimmune conditions, typically B12 deficiency, coeliac
disease, thyroiditis, diabetes.
Several years ago, the Addison's Disease Self-Help Group established
an electronic discussion group (forum) and we have observed that our
members now explicitly discuss the variability in standards of treatment
at hospitals around the UK. More recently, patient choice has been
utilised by some of our members to request that their GP refer them to the
larger endocrine units with a greater depth of expertise in adrenal
management. In particular, our members are increasingly motivated to seek
treatment at a centre that can offer:
Training in self-injection and the provision of injection
Day curve monitoring of hydrocortisone replacement therapy
Access to endocrine specialist nurse support.
For these reasons, the Addison’s Disease Self-Help Group recommended
to the Darzi Review in 2008 that regional (tertiary) centres of expertise
in adrenal medicine should be established throughout the UK, working in
partnership with GP practices to support their adrenal patients.
Katherine G White (Chair), Tag McEntegart (Trustee), Deana Kenward
Addison's Disease Self-Help Group
Competing interests: No competing interests