#NoNeedToDI Twitter Chat
On Wed 21st Oct we held a twitter chat to discuss DI patient safety with an expert panel. Our panel and other Twitter users were able to discuss the questions using #PituitaryQA. Below is a summary of the questions and highlights.
Many thanks to our panel for giving up their time: Dr Miles Levy, Simon Cudlip, Dr Helen Simpson, Dr Sofia Llahana, Dr Niki Karavitaki, Lisa Shepherd and Becky Holdernes
Q1 What are the main challenges that DI patients face?
A lack of recognition from medical professionals - the number of times I've had doctors question me about my blood sugar levels is ridiculous! Also, it took me so long to be diagnosed - it was only after undergoing years of testing that I was finally diagnosed. #PituitaryQA— Becky Holderness (@beckynesss) October 21, 2020
The main challenge seems to be that only patients with the condition and specialist nurses and endocrinologists are aware of it or have heard of it. The word diabetes confuses non-specialists so the name has become an own-goal.— Miles Levy (@mileslevyendo) October 21, 2020
#pituitaryqa DI is rare. Patients and family need to be listened to by healthcare professionals. Patients are experts in their condition— Lisa shepherd (@lisashepherdcl1) October 21, 2020
Q1#PituitaryQA: Prompt diagnosis, getting the dose of desmopressin right, often lack of understanding of their condition by other health care professionals, lack of education on managing fluid balance are some of the challenges.— Niki Karavitaki (@Karavitaki_Niki) October 21, 2020
Q2 Why is it dangerous for DI patients to go without their medication/suitable treatment?
because you can get profoundly dehydrated unless your intake can match your output. It’s so hard when it wears off and you just urinate non stop, every 20/30 mins. So exhausting #PituitaryQA— Nick P (@NParsonage93) October 21, 2020
A2. Patients with DI on this group will tell us how uncomfortable being desperately thirsty is with a constant need to be near a toilet to pass urine. Desmopressin and fluids are the miracle cure. Without fluids and desmopressin catastrophic dehydration can occur.#PituitaryQA— Miles Levy (@mileslevyendo) October 21, 2020
The best descriptions of what it feels like to have DI and no medication include ‘tongue stuck to roof of mouth’ ‘marshmallows as lips’ ‘mouth feels like I have drank a glass of salt’ ‘so desperate I would of drank out of the toilet’— Lisa shepherd (@lisashepherdcl1) October 21, 2020
Q2: #PituitaryQA because without desompressin/constant monitoring of our sodium levels, we can become dangerously dehydrated within hours. This can eventually become fatal if we go without fluids and desmopressin for too long...— Becky Holderness (@beckynesss) October 21, 2020
A2 There have been some high profile tragic cases in the press as I'm sure you all know. Kane Gorny was a 22 year old who died in 2009 and his mother Rita Cronin is very dignified and articulate. She is keen to help out and be a spokesperson. #PituitaryQA— Miles Levy (@mileslevyendo) October 21, 2020
Q3 What precautions can DI patients take when going into hospital?
A3: 1. Ask for admission to a medical ward, ideally an endocrine core ward 2. Medialert bracelet and inform staff of condition 3. Spare tablets incase ward doesn’t have them out of hours 4. Contact pituitary nurse prior to admission if within working hours to alert team— Leanne C (@leeleelilo) October 21, 2020
Q3#PituitaryQA: Take their medications with them, have reliable information leaflets on DI, provide the contact details of their endocrinologist.— Niki Karavitaki (@Karavitaki_Niki) October 21, 2020
A3. I never leave my daughters side. Nothing works. I take notes specific to Lucy, compiled by myself & endocrinologist, but getting someone to read them is a challenge in itself and never happens!!! #PituitaryQA— Judyjax (@Judyjax3) October 21, 2020
A3 The key is communication however that can occur - cards, bracelets, tell everyone you need desmopressin and fluids until they are bored of hearing it. Make sure relatives are ensuring the right treatment is being given and get the endocrine team involved early.#PituitaryQA— Miles Levy (@mileslevyendo) October 21, 2020
Q4 Do you agree the name of diabetes insipidus should be changed, and why?
#pituitaryqa the name at present is easily confused with diabetes mellitus, so name change may help. Will also require more a multi faceted approach (ie, raising awareness, educating HCP at all levels (pre and post registration))— Lisa shepherd (@lisashepherdcl1) October 21, 2020
As a Junior Doctor and a patient with DI, I definitely agree the name should be changed. The term "diabetes" is synonymous with a completely unrelated condition, and it's unnecessarily dangerous to use the same word just because it's what we've always done...— Sam Naylor (@SamNaylor4) October 21, 2020
I think we need to listen to patients and their experiences. They are experts in their condition. As an endocrinology SpR I've seen many adverse events and patients having blood sugars unnecessarily checked. If a name change could help it's well worth considering #pituitaryQA— Ben Loughrey (@DrBenBanner) October 21, 2020
A4: 100%. It's ridiculous that this confusing name has been kept for so long - I get that it's scientifically accurate, but the dangerous consequences of confusion with Diabetes Mellitus outweigh this fact. We NEED to have our condition recognised. #PituitaryQA— Becky Holderness (@beckynesss) October 21, 2020
Q5 What other measures could be introduced by the NHS to protect DI patients?
Q5: Having doctors contact an endocrinologist when a DI patient is admitted could help DI to be taken more seriously. I think that giving patients the chance to explain their own condition rather than switching off after hearing the word "Diabetes" would be a start! #PituitaryQA— Becky Holderness (@beckynesss) October 21, 2020
Q5 #PituitaryQA Introduce an alert in the electronic patient record, informing that the patient requires desompressin and this should not be stopped. Also strongly suggesting to contact the endo team for advice. And of course, continuous education and training of all staff.— Niki Karavitaki (@Karavitaki_Niki) October 21, 2020
Rare endocrine conditions awareness! with access to technology, the answers are just within reach, if we are willing to look for it— Sofia Llahana (@SofiaLlahana) October 21, 2020
Q6 How can we raise awareness of this and other endocrine conditions in the medical professions outside of endocrinology?
A6 I have contacted the Phoenix Cinema and De Montfort University Film School to try and make a short film called 'Dying of thirst' - the aim is to show the horrors of being so desperately thirsty to get the point across artistically - who knows if it will work? #PituitaryQA— Miles Levy (@mileslevyendo) October 21, 2020
A6 It may be unrealistic to teach every single rare condition to all clinicians (medical and non-medical) but an expert patient can participate in shared and informed decision-making. Education and self-management support for patients and families is the key!— Sofia Llahana (@SofiaLlahana) October 21, 2020
Q6 Land, sea and air. Speculate to accumulate. Try all avenues. Get on radio 4, BBC News, pressure on MPs, savvy use of social media. Patient voice is stronger than doctors and nurses. Tell the individual bad stories loud until the collective penny drops. #PituitaryQA— Miles Levy (@mileslevyendo) October 21, 2020