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"I definitely expected better"

About: Diabetes / Diabetes Outpatient Clinics Diabetes / Diabetes Specialist Nurse Service Ninewells Hospital / Diabetes

(as a parent/guardian),

My 13 year old son was diagnosed with type 1 diabetes in July 2023.  This came as a huge shock and turned our world upside down.  The initial care from the diabetes team was helpful and very supportive. 

The majority of the care and advice came from the dietician who was an incredible support at a difficult time. Unfortunately since December 2023 we have felt completely isolated and abandoned as we try to navigate through new challenges with this chronic illness. He is now experiencing erratic blood sugar levels and I have tried on many occasions to get these into range but feel that I am often dismissed. Our last clinic appointment was online which didn't work for him at such a sensitive age.  I have since been informed that these appointments can be online or in person, this was never previously mentioned as an option,

My biggest concern is that he has been encouraged to move to pump therapy since about 3 months into his diagnosis, this being mentioned to him as part of every interaction with medical staff.  After a difficult few months and challenges with his insulin injections he has come round to the idea after much persuasion, to be informed the waiting list is a year.  I have challenged this and have been told it is due to budgets, therefore my son's health and wellbeing is now a postcode lottery!

If this was made aware to us at the start of his diabetes journey we would have joined the waiting list months ago.

I would like to know the criteria for who access pump therapy, who has priority.  I would also like information on how to submit a freedom of information request regarding insulin pump allocation.

This has had a significant impact on our family and feel we are back at the start of our T1D journey, I definitely expected better care and support for a child adjusting to living with diabetes.

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Response from Clare Webster, Paediatric Consultant, Paediatrics, NHS Tayside 2 months ago
Clare Webster
Paediatric Consultant, Paediatrics,
NHS Tayside
Submitted on 28/03/2024 at 17:59
Published on Care Opinion on 29/03/2024 at 09:52

Dear empathyxq76

We are very sorry that you have felt dismissed by the DOT team. The DOT team strives to provide individualised, tailored support to families while empowering families to self-manage their diabetes and I’m sorry if we got that wrong with you and your family. We will take on board this feedback.

In person clinics are an option, please discuss this with the team.

With regard to these issues, the DOT team would be keen to talk to you and plan the best way to go forwards from here.

There is strong clinical evidence that pump and sensor therapy is the best treatment for young people with type 1 diabetes and there are multiple diabetes guidelines which recommend this treatment for young people with T1D. It is the responsibility of the clinical team, in this case DOT to make sure families are well informed about this. The DOT team aims to onboard all young people on to pump therapy in a timely way however this has been limited due to capacity and going forwards due to budget.

In light of limitations, the DOT team has clinically prioritised young people using the following criteria:

Pre-school age child

HbA1c > 75mmol/mol

Waiting > 1 year

It is important to acknowledge that not all families will want to pursue this treatment which is why this has been an ‘opt in’ waiting list until now.

The DOT team is linking in with NHS Tayside managers and finance in order to advocate for prioritisation of diabetes tech for all young people in our clinic.

If you would like to raise this issue with NHS Tayside please do so via the NHS Tayside Complaints & Feedback page.

Best Wishes

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