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"Left feeling defensive"

About: Crosshouse Hospital / Endocrinology and Diabetes

(as a parent/guardian),

My son was diagnosed with type 1 diabetes at age 4 and had a great paediatric service at NHS Ayrshire and Arran.  However, since he left school and turned 16, they told him he now had to attend adult services.  

The problem is, my son is going through a real psychological time of it - he is living with severe burnout.   He's had type 1  for over 12 years now, and has had to live with myself and his dad separating and divorcing in the last three years also.   He struggles mentally to cope with his treatment and his diet, he also has coeliac disease.   My son needs extra support mostly everyday. He needs me constantly remind him to change his cannula for his pump, he never tests his blood sugars and all because he doesn't feel confident or in control of it anymore.   He's frightened of having another seizure as he had a severe seizure on holiday and nearly died.  We've all been living with the trauma of that for two years now.   With nightmares during sleep and myself going to a brief six week counselling.  

The trouble is, he was told on the phone by an adult diabetes nurse specialist that if he doesn't come to clinic "he'll get his pump taken off him".. This felt like a threat to him, and now he doesn't feel happy to go back there ever again. He told me she spoke to him like he was a child.   The person on the phone said to him he hadn't been at a clinic since before Christmas which is not the truth - as I personally took him to Ayr Clinic in February.   Whilst at that appt the doctor didn't even know why my son had been sent there in the first place  - as his normal clinic is at Crosshouse.   They didn't really do anything to help my son, just told him that he would be referred back to Crosshouse.  

So you see, this phonecall with my son left him feeling defensive and to protect himself - he told her, "actually I was seen in February".   This has now led to my son feeling that he never wants to attend clinic again.   He needs the help and support more now than ever.   As teenagers move away from parental support - transition is supposed to empower them, support them and encourage them, not threaten them.   I'm greatly concerned for my son's health. He struggles so badly. He has severe insomnia most of the time.   He's scared to sleep some nights.   I tried to take him to the GP but he said it was a waste of time because the GP didn't understand his diabetes. Please help us.

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Responses

Response from Eunice Goodwin, Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team, NHS Ayrshire and Arran 4 years ago
Eunice Goodwin
Patient Feedback Manager for NHS Ayrshire and Arran, Quality Improvement and Governance Team,
NHS Ayrshire and Arran

I respond initially to most of the posts and ensure they are passed to the appropriate team whether they are compliments, observations or grumbles. It is important to make sure all issues are addressed and I try to encourage that to happen for all the posts as required.

Submitted on 27/06/2019 at 17:35
Published on Care Opinion at 17:35


picture of Eunice Goodwin

Dear deecee22,

I have been asked to post this on behalf of Morag, Lead Diabetes Nurse

“I am sorry that your son is struggling with a variety of things just now and that he now feels he does not want to come to the clinic. That is the last thing that we want for him and his diabetes care.

I fully understand how worrying it can be watching your son struggling. As parents, we are used to taking control and this is something that only your son can do, obviously with your vital support and help.

I have reviewed your son’s notes and I have had a chat with the specialist nurses involved and I see that your son transferred to the adult service in November 2018. As your son is now classed as an adult, you may not be aware of some of these details regarding appointments..

You are quite right that the discussion took place about the pump and the need for regular attendance and surveillance is imperative and that without this, the pump may be reassigned. This is standard advice given to all our ‘pump’ users. I am sorry if this felt like a threat; it is just good practice for management of diabetes via the pump.

Unfortunately, our electronic notes had not been updated to include your son’s attendance at Ayr at an extra ‘catch-up-session’ and I am not sure why that was the case. The Diabetes Specialist Nurse who spoke with your son was not aware of this attendance and she is sorry for any offense caused by this.

Our consultant Dr Fergusson will be happy to have a chat with your son to help allay any fears he may have around any aspect of his diabetes and/or care should he want to. He can be contacted by calling 01563 827590.

Thank you for taking time to share this on Care Opinion,

Kind regards

Morag

Morag McCrone"

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