Nursing relationships with the pituitary patient

By endocrine nurse Pauline Whittingham

 

A key part of a pituitary MDT is the endocrine nurse specialist. Often acting as named key worker the nurse is the communication between Consultant and patient in many centres.

Patients enter into follow up long term, often lifelong, so good relationships are not only essential but helpful to all sides.

The 6 c's

The Chief Nursing officers 6 c’s of Care, Commitment, Communication, Compassion, Courage and Competence encompass all that nursing in general is about. They are also key to delivering a specialty service well, and none more so than Endocrinology.

Endocrine nursing is, of course not without its difficulties. Diagnosis can be challenging for all involved, not least the patient. Multiple investigations may be needed, patients will often have had multiple GP visits before finally being referred into specialist review.

Not surprising then that anxiety and tensions can be fraught. Here the Endocrine nurse can set the tone for the long term relationship to follow, recognising patient concerns and fears and explaining pathways and investigations are all valuable to patients and families.

Availability 

Perhaps the most wished for aspect by a patient is availability, knowing who to contact and how, feeling confident that their nurse will return their calls. It’s a bit like having a knowledgeable friend to turn to when times get tough.

There are many excellent centres throughout the country that are able to provide their patients with just such a friend in the guise of their specialist nurse. Sadly there are also many that cannot, patients at these centres may struggle to make contact with their Endocrine teams, not have calls returned and generally feel lost and abandoned.

Some will find The Pituitary Foundation and possibly ring either the nurse or the general helpline. Whilst we can be of great help offering support and general advice we do not alter in any way their plan of care or medications. Whilst this can frustrate some patients we ensure all callers understand our remit is the provision of accurate and valid advice, support and help.

Others will use the internet as their means of support and as we know information gleaned through that route is not always the most reliable, and could cause confusion at subsequent review visits.

My role

One part of my former NHS role I appreciated was the growing old with my patient group, I knew many of them for over 20 years and we could literally talk of anything in our clinic reviews. They may discover something over the world wide web but they would check it out with our team before trying it out.

I well remember loss of family members, loss of pets, change of jobs, children growing up and life generally going on. For me that was as much part of their nursing care as my reviewing their replacement therapies and checking replacement levels/doses.

Now I am in this role with the Foundation, I am finding a steady and growing group of patients who ring regularly for advice or clarification of discussions they have had at clinic review. Just to give an idea in the past 3 months, with 12 hours per week active on the helpline, I have taken 210 calls with a similar number not answered as busy on calls.

Often the callers are patients who attend centres where there is no endocrine nurse availability, but some are not and generally these patients aren’t aware of their nurse or their contact details.

Many patients will use our Patient Care Card, this has space for medications and for Endocrine Nurse contact details. This may be a useful way for your patients to keep your number to hand for use when necessary.

So just something to reflect on, - do your patients know their endocrine nurse and do they know how to contact you. Could you build around the 6c’s to improve their experience?