UCLH Members Meet Pituitary disorders UCLH Department of Diabetes & Endocrinology 15 th November 2016
The pituitary journey- behind the scenes of a multidisciplinary team • Dr Umaira Aziz, SpR in Endocrinology • Dr Umasuthan Srirangalingam, Consultant Endocrinologist • Miss Joan Grieve, Consultant Neurosurgeon • Inma Serrano, Clinical pituitary nurse Specialist • Afizah Nobeebux, Specialist nurse in Endocrinology • Dr Stephanie Baldeweg, Consultant Endocrinologist
Program An introduction into the healthy pituitary gland and its hormones The pituitary gland: what can go wrong? Pituitary surgery The role of the specialist pituitary nurse Lifestyle and pituitary disease The pituitary journey- how to navigate your condition Questions and Answers
A pituitary experience: can we make it more positive ?
Ingredients • Patient • Medical/ surgical team • Hospital • Treatment(s) • Future
The Patient
The patient ’ s journey • Long • Complicated • Not pleasant • Not of my own choosing • Uncertainties all along • ********
The patient ’ s journey starts • Dentist • GP • Orthopaedic surgeon • Psychiatrist • Optician/ ophthalmologist • Friends • A stranger on the bus/ train/golf course • Casualty/ ER • Internet The Patient
Patient meets the team
The team • Biochemist • Receptionist • Pathologist • Consultant Neurosurgeon • Specialist Nurse • Radiologist • Consultant Endocrinologist • Ophthalmologist • Staff Nurses • Radiotherapist • Junior doctors • Pharmacist • Porters • Secretary • Theatre staff
The team • Biochemist • Receptionist • Specialist Nurse • Pathologist • Consultant Endocrinologist • Radiologist • Consultant Neurosurgeon • Ophthalmologist • Staff Nurses • Radiotherapist • Junior doctors • Pharmacist • Theatre staff • Secretary
The Team The Patient
A pituitary experience: can we make it more positive? Tip No 1: Join the team The Team
A pituitary experience: can we make it more positive? Tip No 2: Check who is who • How experienced are they? • Are they familiar with your notes/ story ? The Team • Who is making the decisions? • Will they discuss with the consultant ? • Can you meet the Consultant? • How will you hear of the outcome?
The endocrinologist ’ s journey 5-6 years Medical students Pre-registration House Officers 1 year Senior House Officers (SHO) 2-4 years Specialist Registrars ( SpR) 5-8 years Diabetes, bone disease, fertility, pituitary, oncology, thyroid, pregnancy, general internal medicine Consultants Total training 13-19 years Experience as consultant 1-30 years
The place / the visit
• Specialised centres in the UK • 1- 2 dedicated surgeons • Joint pituitary clinic with surgeons and endocrinologists
A pituitary experience: can we make it more positive? Tip No 3: Check the place out • Is this a specialist centre? • Is your surgeon doing most of the pituitary operations there? • Is there a joint clinic with endocrinologists & neurosurgeons?
A pituitary experience: can we make it more positive? Tip No 4: Invite your GP The Team into the team GP
A pituitary experience: can we make it more positive? Tip No 5: The Team Get the most out of your clinic visit • A friend or relative (Introduce them) • Copies of letters/ scans (This clinic, Other clinics, Names of doctors) • List of medication • Prepare list of questions • Communicate how you feel • How to communicate in the future
A pituitary experience: can we make it more positive? Tip No 6: The Team Ask all you want to know about surgery! • What is your cure rate? • How likely are you to cure me? • What are the possible complications and how likely are they? • How long will I be in hospital for? • Will I need other treatments afterwards? • Is there any written information I can take home? • What happens next?
A pituitary experience: can we make it more positive? Tip No 7: The Team Ask all you want to know about drugs! • What are they for? • How effective are they? • What are the possible side effects and how likely are they? • How long will I be taking these? • Is there any written information I can take home? • What happens next?
A pituitary experience: can we make it more positive? Tip No 8: The Team Ask all you want to know about radiotherapy! • Why do I need this? • How effective is radiotherapy? • What are the possible side effects and how likely are they? • Where and how will I be treated? • Is there any written information I can take home? • What happens next?
The state of pituitary care today • Complex • Multidisciplinary • Patient -centred • Consultant- led • Cost-driven • Communication is central
A pituitary experience: can we make it more positive? • Join the team • Check who is who • Make your GP an ally • Get the most out of your clinic visit • Ask all you want to know about your treatment • Communicate
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