Ellie’s story


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Today we’re off to Parliament with 100 parents and kids with Type 1 to lobby for better healthcare for children and young people with Type 1 diabetes. As is par for the course with these type of things, there will be speeches. Our Chief Executive, Barbara Young, will say some words about the campaign, and the Shadow Secretary of State for Health, Andy Burnham, is also popping by to lend his support.

But more importantly than these two, we’re lucky to have a young person with Type 1 to say a few words. Ellie is taking time out of her busy schedule to help out and tell MPs why the Type 1 Essentials campaign is so important and why those in power need to act quickly to improve the healthcare that children and young people with Type 1 diabetes receive.

Over to Ellie…

“First of all I would like to begin by saying what an honour it is to be here speaking to all of you today about just what this campaign means to me, and why it is so important that all children and young people get the recommended health care checks that they need. Let me introduce myself, my name is Ellie Huckle and I am 15 years old; I was diagnosed with Type One Diabetes on June 21st 2009, so that makes nearly four years of living with Diabetes.

I would like to share some of my own experiences to demonstrate just how important the correct level of care is for someone in my situation. Let me start by telling you about the week in which I was first diagnosed. Once my parents realised that something was wrong with me they took me to the doctor who recommended a fasting blood test, the results were sent back to my doctor the following day being a Tuesday.

The surgery subsequently phoned and spoke to my mum asking her to make an appointment for me to go and see the doctor. The lady on the phone advised that it wasn’t urgent and that the earliest they could see me was on the Friday…

When we went to see the doctor even though my fasting blood sugar was 16 he thought it was a good idea to repeat the test the following Monday and advised us to avoid carbohydrates. My parents weren’t happy with this so took the matter into their own hands and went out and bought me a blood sugar monitor. We did some random blood sugar tests and they were always high but one particular reading meant that we had to seek urgent medical attention.

So, off we went to A&E and that’s when I was immediately admitted into hospital. The staff on the ward were extremely helpful, in particular one nurse whose own son was diabetic, so she gave us essential first hand knowledge. However she was flabbergasted at how my initial diagnosis came about and couldn’t believe that my GP had almost failed me. I think back to that time and am forever grateful that my parents had the foresight to react to the situation.

Following on from my diagnosis and after having attended several follow-up appointments at my local hospital we soon realised that the advice that was being given to us was poor and inadequate and did nothing to help me deal with my diabetes in a positive way.

It was during this time that my mum started talking to other people with diabetic children and she found out that many had found themselves in the same situation and had referred themselves to different hospitals. Looking back at the level of care at my local hospital when it definitely did not tick all of the boxes that I have seen in the Type 1 Essentials campaign.

Fortunately, I now travel into London for my appointments which is worth it as I see first hand how much of a difference it can make to the life of a Type One Diabetic if these T1 Essentials are met. I feel secure in knowing that the doctors at the hospital are there for me if I need support, whether it be emotional, technical or general help in controlling my blood sugars. I also got my pump from here which wasn’t available at my local hospital and this alone has made a huge difference to my life.

As most of you already know having diabetes means lots of repeat prescriptions for all sorts of essentials and in particular testing strips, especially if you are attempting to gain tighter control of your diabetes. At one time my mum was questioned as to why I tested so many times during the course of the day and why our repeat prescriptions for testing strips were excessive. My GP was under the impression that I only needed to test three times a day.

Let’s move on to last summer when I ended up in A&E due to my pump tubing becoming disconnected during the night. To cut a long story short, I was in Diabetic ketoacidosis- a potentially life-threatening condition characterised by a lack of insulin and high blood sugar, which if left untreated can lead to a coma and/or death. However, much to the distress of my parents it took my local hospital five hours to adminsiter intravenous insulin by which point I was very sick.

Experiences like these have made me more determined to raise awareness of Type one diabetes and are testament to the uttermost importance of this campaign run by Diabetes UK. I am not completely au fait with diabetes care on the NHS but I do know over 85% of young people living with Type one diabetes in the UK have blood sugar levels higher than the recommended targets.

Surely in the long-run this will cost the NHS more money as they will find themselves treating complications that could have been avoided had the care been adequate and of an acceptable standard.

Ellie.”

You can find out more about our Type 1 Essentials campaign for children and young people through our website. You’ll also find a list of the 10 Healthcare Essentials that every young person with Type 1 should be receiving. You can take this list with you to your next appointment to make sure you’re all getting the care you should be.

A big thank you to everyone who is helping out with the lobby today, and to Ellie for writing such a brilliant speech. You can read more from Ellie on her blog.

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Thank you Ellie. Types 1s have to manage their own condition carefully. Healthcare teams are not always up to scratch. Sadly

This reinforces the fact that sections of the NHS are staffed by complacent and incompetent staff ,with major failures in key leadership and management and training. I was appalled at reading of Ellie’s experiences which contrasted sharply with the way I was diagnosed and treated by caring and competent staff and Doctors in Liverpool in 1964 despite the lack of modern technology ,pumps etc.