This is a blog I wrote a little while ago about breaking bad news. I thought I would post it from the DSN forum blog page as many of you will not have seen it when I posted it originally from my own blog page.
Many of you will know my son has type 1 diabetes, we were lucky enough to know the signs and act quickly before he became too unwell. On the 23rd August it will be his 3 year diaversary and we will be having cake! His diaversary always makes me think back to his diagnosis and how life changing it was.
This blog is for Health care professionals on behalf of people diagnosed with new type 1 diabetes.
Being told you have type 1 diabetes is a memory that will stay with you for the rest of your life. How as a healthcare professional (HCP) do you tell your patient or their parents, in the case of a child, that they have type 1 diabetes?
For the majority of the time, when I see people newly diagnosed they have already been told their diagnosis by the doctor and so when I introduce myself as the diabetes nurse they are usually glad to see me. I will then answer any questions they may have about their diagnosis now that they’ve had time to digest what they have been told.
However on occasion I have gone to a person and introduced myself as the diabetes nurse and then been confronted with someone who does not know about their diagnosis. This got me thinking, can we as HCPs improve how we explain a type 1 diagnosis to patients. I enlisted the help of other parents of children with type one on a Facebook group and asked them about their diagnosis story. What I found was an unprecedented response rate of parents wanting to tell me their stories and to share them with other HCPs. Some of which as a HCP and a mum brought a tear to my eye. I would like to share with you some of the responses I received so that we can all learn from this and hopefully be more mindful in our future conversations when discussing a diagnosis with people new to type 1 diabetes.
“A nurse came in with an injection and said I’m going to give him some insulin. I said, what, he has Type 1 then? She said oh has the doctor not spoken to you? I will wait then.I said no, don’t wait give it to him! I then ended up feeling very faint and had to lie down.”
“Our gp phoned the ambulance from the surgery and said we have a new type 1 diabetic, he hadn’t told us”
“I asked a paediatric doctor if he had T1 he said maybe, I believe it was because i was an ITU nurse manager and they had a lack of skills to speak with me, to pass on information…a lovely female consultant confirmed he had type 1.”
“The lead doctor at our GP performed the initial test at the surgery and ‘broke’ the news to us as if she was going to die, all made worse by our lack of understanding about the condition – it was terrible and frightening and i was hysterically crying… it was one of the most desperate times me and my partner had ever experienced”
“The first time any medic said Diabetes in my presence was when I overheard two nurses talking about the “Diabetes boy in room 2″ as I walked around Paed A&E trying to get a mobile signal to let my wife know where we were.”
“I feared i knew what it was before seeing the gp. But he didnt want to say the D word, just implied it was what I thought it was from laying out the 4Ts and the test strip we used at home. We were very lucky it was caught early.”
“I don’t think anything was ever really explained but partly because the Diabetes team was his dads team for 10 years so everyone just assumed we knew which we did”
“Gp said to do a sample with reception to rule out glucose! Receptionist dipped sample then went “Oh is your son a diabetic”? Erm nope… oh I better speak to the dr. We had to go back 2hrs later where gp confirmed with finger prick… his bg was 33. Luckily no other ill effects.”
“I had to ask, is he diabetic then? The hospital staff were very kind, but it’s all a weird blur really.”
“I’m a Paramedic and tested my daughter myself. We took her in to A and E. A nurse we knew walked past and asked why we there and I said her BM was high. She asked if she was a known Diabetic and we replied not until 30 minutes ago. We then saw a Dr we knew and she said – I think you already know what this is, there is no other explanation. ( She didn’t actually say the words, but we knew )”
“We were on holiday in France – so scary as I knew there was something really wrong but they kept saying it was a virus. On our 3 rd GP visit he collapsed in the waiting room – told in French c’est le diabete.”
“My daughter was in dka and taken in by ambulance. The paramedic took her bg reading twice. As going through the doors to a&e the receiving nurse said i smell peardrops, paramedic said here’s her last bg reading, mum says not diabetic. Nurse replied she is diabetic now, we need the dr now she needs insulin urgently.”
“We were at gp on the Thursday and gp thought son had glandular fever, had phone call at 7.30am on the Monday morning to say rush him to sick kids he has type 1 diabetes.”
“I discovered my wee ones T1’s diagnosis when the nurse came in and put a jdrf bag on my sons bed full of needles/diabetes supplies.It had a novonordisk kids guide to diabetes book in it and a letter from jdrf. Some time later the consultant came along later and gave us the official diagnosis .”
“The doctor said “it’s not a sickness bug, I’m so sorry. Your son is in acid shock, he must go straight to hospital. I’m so so sorry. Do you think you will be quicker in your car or an ambulance?” I still hear these words ringing in my ears. When we got to hospital we were told that the next 6 hours were critical, the acid shock was effecting his lungs and they didn’t know if they would have to induce him. Longest night of my whole life”
“They were too busy trying to save my 2 year old’s life to have time to tell me anything. While trying to put lines in and secure her airway they just said we’re treating her for type 1 diabetes………..I only learnt afterwards how touch and go it had been. I would much rather they concentrated on her than keeping me informed. Couldn’t fault the A&E staff they were amazing”
“I went to the GP as my Daughter was drinking loads and loads of water. He checked her blood, it was 19. My GP then said it was probably diabetes and to come back next week to repeat the test. I went home, but was really worried about my daughter. I knew there were paediatric asthma nurses and paediatric dermatologist nurses so I rang the hospital and asked to speak to a paediatric diabetes nurse – she told me to pack an overnight bag and come immediately to the hospital.”
“The GP told us that the likeliest explanation for having sugar in his urine was diabetes, she was being quite straightforward but not brusque but she also wanted us to take him straight to hospital and phoned the ward about it while we were there”
“I took my son to A&E as he was feeling so tired all the time.. they picked his finger could not get a reading rushed him through to a doctor put him on a drip..they then told me within about half an hour your son has type 1 and will need insulin for the rest of his life ..I asked them if they had made a mistake did not know what type 1 was”
“I was confronted by a paediatric consultant whilst we were in a&e and my daughter was in dka, asking how long she had been diabetic😕”
“A registrar i think came around 11pm and said she has diabetes and the specialist nurse would be round in the morning to discuss everything..”
Dont think it hit me till I rang the nursery to say won’t be in as we are in hospital and they said hope it’s nothing serious.”
“She asked what we thought it was, I said someone had said it might be diabetes but she was too young (!), talked around it for a while, tried & failed to get a urine sample, did a finger prick which came back HI, she said “it looks like it is the D word, you need to go to children’s A&E now, which hospital would you like to go to?”
“My husband is a GP. I drove to his surgery as I knew something was very wrong. He dipped her urine, did a finger prick and then just burst into uncontrollable tears. He sobbed all the way through the call with the paediatrician, letting her know that we’d be in as she was in DKA and would need to come in via A and E. I drove to hospital and my husband kept working because he didn’t want to let his patients down.”
“Our dr confirmed our suspicions and just kept saying sorry, he was really sweet”
“My doctor was more shocked than I…she had initially laughed when i said ‘im hoping your going to say a uti but im thinking diabetes’..dipped the urine and her face said it all…but through GP and onwards to hospital i have no complaints…the consultant and the diabetic team spent alot of time with us giving us explations and support…”
“we were told quite gently by the doctor in a&e… she said ‘do you understand what is happening’ and I said ‘well I’m assuming my daughter has diabetes’ and she said ‘yes she does’ and went on to explain everything. The worst thing was when a nurse told my daughter not to worry as there have been loads of advances and soon artificial pancreases would be available”
“A very nice T1 nurse took the time to talk to me when I was very distressed”
“They did loads of blood tests and then the diabetic nurse came in and explained that she is definitely diabetic and that she needed to give her insulin straight away.”
“I kinda knew and took a wee sample into the GP who said it was full of sugar and then called the nurse in to check his bloods which were 26 i think. She said it was diabetes and he had to go to hospital right away. My worst fears were then confirmed.”
The experience of being told that your child has a long term condition is one of those “remember forever” moments like how you remember when they were born. It really does make you think about the words you use and about keeping the patient and their relatives informed of what you are testing for and what the potential outcome could be at the earliest possible chance.
Thank you for taking the time to read this please share with your colleagues in the medical profession. Hopefully by improving our communication we can make a life changing experience a bit less stressful and a bit more supportive.
Diabetes Specialist Nurse Forum UK Blog 