Time for tea? Encouraging a support network among patients with acromegaly
Jean Munday | Nurses' News
A light-hearted conversation earlier this year led to a new initiative which has been very well received by our patients with acromegaly.
It all began when colleagues and I commented on how nice it would be if a patient that one of us had just seen could become friends with a lady with acromegaly who lives in the same locality. Because they are of a similar age, we even imagined that they might go for walks and have afternoon tea together! Wondering how we could introduce them to one another, we eventually decided to hold a meeting for a group of patients with acromegaly who attend our clinic.
In Portsmouth, these patients are seen in the consultant-led pituitary clinics. Those who need treatment with somatostatin analogues have their initial monthly injections with an endocrine specialist nurse. Once they are on a stable injection dose, we hand over to their practice nurse for ongoing administration. If the practice nurse asks for training, we arrange to meet them and the patient together at their surgery when the next injection is due. Patients often comment that they like the initial monthly endocrine specialist nurse contact at the hospital, and miss their specialist expertise when it ceases.
So, we planned a date and identified a venue for our meeting. Following a search of our electronic database for all patients with acromegaly attending our clinics, we invited 20 to come along.
'Patients often comment that they like the endocrine specialist nurse contact at the hospital, and miss their specialist expertise when it ceases'
Before the event, the endocrine nurses and specialist registrar met to plan the content of the meeting. We agreed that the main aim was to give patients the chance to meet one another, as many had never met another person with acromegaly. However, we needed some structure, so we included time to update them on innovations and an opportunity to ask questions. For catering purposes, we asked invitees to let us know if they were coming.
Two weeks before the event, we noted that only approximately 50% had replied, so we invited another six patients from our list.
ACTIVITIES ON THE DAY
On the day, 12 patients attended. The specialist registrar and an endocrine specialist nurse ran the event. They demonstrated an app showing patients how they could personally track their care, which many found interesting and informative.
Attendees were also invited to write down anonymous questions that they wished to ask either to the group or to the health professionals. The questions were read out by the doctor or nurse who then answered them, or a group discussion followed. It was thought-provoking for patients to see how others had responded to their diagnosis and treatment. This was the part of the afternoon which many found most beneficial.
'It was noticeable that most of our patients with acromegaly had never met someone else with the same condition, and how beneficial they found this experience'
Interestingly, upon seeing one of the attendees a few weeks later in clinic, I noticed they were calmer about their condition. When I explored this, they mentioned feeling relieved that their symptoms were less severe than those of others they had met, and said they had a new confidence that acromegaly could be managed successfully.
Attendees completed anonymous feedback forms at the end of the event, which showed that 91% felt the group was of great benefit. Every- one said that they would like another similar event to be organised. We noted one specific comment that not all questions had been answered. This was due to time constraints and the inappropriateness of some questions for a group situation; it is something we will try to address at future events.
It was noticeable that most of our patients with acromegaly had never met someone else with the same condition, and how beneficial they found this experience. We therefore have plans to run this group again, inviting the remaining patients with acromegaly from our database. Thereafter we intend to make it an annual event. We are also considering which other rare endocrine conditions may benefit from patients meeting one another, and anticipate our next focus will be on those with Cushing’s.
Lead Nurse Endocrinology, Queen Alexandra Hospital, Portsmouth