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Specialist multidisciplinary clinics for adults and children with Katp channel-related neonatal diabetes

Purpose of the service

Our new, national clinical service will offer patients with KATP channel (KCNJ11 and ABCC8) related neonatal diabetes the opportunity to see a series of specialist healthcare professionals in one visit. These specialists will provide clinical assessments and advice for each of the different aspects of the patient’s condition.  For example, people with KATP channel related neonatal diabetes may have neurodevelopmental problems as well as diabetes.  The findings from each of the specialists will be reported back to the referring clinician in a single document along with any ongoing recommendations for the patient’s clinical care.

The clinics

Clinics will be held in the NIHR Exeter Clinical Research Facility, with one adult clinic and one paediatric clinic per year.

Investigations and tests

All individuals who come to the clinic should have blood tests undertaken locally prior to their attendance so that the results are available on the day of their visit to Exeter.  The specific blood tests required will be outlined in the clinic invitation letter.  Some individuals may be asked to complete questionnaires about development, behaviour and mental health prior to their attendance.

A series of further tests may be done during the clinic visit.  These could include;

  • Measurement of height and weight
  • Blood pressure
  • Urinalysis
  • Urinary C-peptide creatinine ratio (UCPCR)
  • Screening for neurodevelopmental / psychiatric disorders or neuropsychological impairments

Professionals seen in clinic

During the clinic, each individual and (if present) their family / carer will meet with a range of healthcare professionals with specialist knowledge of these conditions in a series of separate consultations.  The specific professionals involved will vary depending on the age of the individual and their specific needs, but may include;

  • Diabetologist
  • Diabetes nurse specialist
  • Paediatrician
  • Neurologist
  • Geneticist
  • Neurodevelopmental specialist
  • Dietician
  • Research nurse or research practitioner
  • Each clinic attendance will take up to 3 hours, and up to 4.5 hours if any specific neuropsychological assessments are being undertaken.

Research

Individuals attending the clinic will also be offered the opportunity to take part in research studies that may be of interest to them.  There will be no obligation to take part and decisions will not influence their clinical care.

How to refer to the service

Referrals are accepted from GPs, hospital Consultants, or individual patients (self-funded).  Please send referral letters to:

Shirley Brooks
Diabetes, Endocrine & Obesity Services
Room D102, The MacLeod Diabetes & Endocrine Centre (MDEC)
Royal Devon University Healthcare NHS Foundation Trust (RDE Hospital, Wonford), Exeter EX2 5DW

or alternatively e-mail referral letters or enquiries about the service to:

shirley.brooks1@nhs.net