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DN charity donation: £10,000 – NHS Norfolk & Waveney ICB

We have received a short statement from NHS Norfolk & Waveney ICB regarding the £10,000 grant we have given towards this online training. This is the first diabetes specialised training Norfolk has ever provided for health professionals. More information can be found here: https://www.cdep.org.uk/home.html

Dear Diabetes Norfolk,

I am writing to thank the contributors of the charity for their very kind donation towards a programme of staff training called The Cambridge Diabetes Education Programme (CDEP).

The programme allows health and social care staff who are both registered and non- registered to learn about many aspects of diabetes care online and at their own pace.

Diabetes Norfolk funded almost 1000 courses from April 2023. The places are proving popular with over one third of places already used (July 2023).

CDEP runs campaigns such as hypoglycaemia awareness which helps the system to promote the courses each month.

To date this year, there has been particular interest from staff working in primary care and care homes.

Caring for the diabetic foot has been the most popular course to date but there are very many courses to choose from.

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Nina Wadia Interview

Thank you for agreeing to be interviewed by me, Lucy Webster, Charity Co-ordinator of Diabetes Norfolk. We’re really interested to hear from you, particularly with regards to having a son with Type 1 and the journey you have faced and continue to face as a mum and a family to help raise awareness and help people not feel so alone.

My journey was a very unexpected one as is anyone’s who faces a sudden, random type 1 diabetes diagnosis in their family to help raise aware. I wasn’t aware of type 1 diabetes. My son became unwell on holiday to Thailand – he become very thirsty and although he was eating many times a day was losing weight. On the flight home he became very ill with sickness and his eyes rolled back and he passed out which was absolutely terrifying. We took him straight to hospital where they asked: ‘do you know he has type 1?’ and I didn’t know what she was talking about but realised this is the horrible diabetes where you have to inject before food for the rest of his life.

I absolutely blamed myself and thought I must have done something wrong and it took me about 3 years to not blame myself. Prior to this diagnosis, about 7 months, my son was very poorly with daily sickness and our consultant said that type 1 can be virally induced so we think it was due to this.

I do whatever I can to raise money for the diabetes cause and to find a cure. It means so much to me that a cure is found. It has changed our lives so much as it becomes like an obsession and the thing that keeps my son going is technology. We were so pleased to move him from injections to the Omnipod. I was pushing for a pump but we had to do injections for the first six months and I wish there was more honesty that we would receive the pump in due course. This caused a lot of stress as we weren’t sure if my son would be able to access the pump and more advanced treatment.

If I could say one thing it’s to look after the parents too because the mental health stress is just ridiculous for parents as the children blame the parents and can cause resentment from having to continually remind the child to eat, inject, blood level monitoring, stress for managing the condition, the worry your child will have awful hypos in their sleep, etc etc. I would love for there to be a type 1 parent community set up where parents can go to. We wouldn’t have survived if we didn’t have a forum or Facebook community as NHS help is not there 24 hours a day so a dedicated website for type 1 where every question is answerable such as why does pasta affect my levels this way? Like a 24 hour hotline number with a library of information where people who have experience can help and support you – even in middle of the night when often horrendous hypos happen. I didn’t sleep for nights as I worried my son could die in the middle of the night from a hypo. Some enhanced support would be so much appreciated.

My son was lucky enough to have the Dexcom G6 where an alarm goes off to alert me of hypos. It totally changed my life. I joined the campaign to get the Dexcom available as well as looping. My son was so depressed and wondered why diabetes had happened to him and thought he must have done something bad for God to have given him this illness. I had to reassure him it was random. My husband and I decided to raise money and awareness to find a cure and helped my son with a belief system.

I raise money wherever I can and appear on TV shows where I can. I won £50,000 on Sitting on a Fortune and donated it to JDRF! I couldn’t believe my luck. I hope this will go to finding a cure. There is a race on now that there will be a cure and I look forward to this very much where there will be a day where I can turn to my son and say this isn’t going to happen anymore.

Is there enough support in your son’s education with managing diabetes?
It was difficult. On the plus side, the lunch ladies and school head were very helpful and sat with us and asked what they could do help – they weighed out his food. On the negative side, sometimes teachers would say, ‘sorry he’s got chocolate’ and I had to explain many times that he could eat it as he can adjust his insulin. I found this frustrating. This prompted me, as a form of therapy, to write a book called Bionic T1D. I want parents and children to have a book to feel more connected.

When my son was 6 I was invited to a charity event to hand out an award to children with diabetes. I met the young girl who received the award and the parents. Four years later my son gets diagnosed with type 1 and the same young girl was at the school! The mum helped me so much with diabetes support. You meet good people when you do good things. She introduced me to JDRF.

My OBE was due to 30 years of entertaining and charity work including Barnardos (my dad was an orphan in India), I have been a campaigner for kidney donations as I lost my mum to renal failure.

If you had three wishes to help diabetes in children what would they be?
1. A cure;
2. That the technology is so incredible that it is pain free;
3. That children aren’t treated any differently due to having diabetes.

Suggestions where a charity like Diabetes Norfolk could help?
100% Mental health support for both children and adults affected by diabetes. We had to pay privately as we were significantly affected as parents and so too was our son’s mental health. It took four years for the NHS to offer us any. Unless you have diabetes, or know someone personally, you don’t understand the level of stress you’re suddenly under. It is relentless! My son stopped eating as he didn’t want to inject or prick his finger and by stopping eating he thought he wouldn’t need to do this. He would rather starve himself than have the finger pricks! It’s the smaller things that matter. If money could be put towards a website and a hotline number to offer support it would be such a heavenly thing to have with a connection to mental health support too.

3 top tips for parents whose child has recently been diagnosed with diabetes?
1. Don’t underestimate the diabetes community on Facebook/internet with type 1 emphasis as is so very helpful.
2. Reach out to therapists as it is overwhelming and you need to let your feelings out.
3. Please join any charity that is helping to find a cure for diabetes.

I would say that when it comes to your child, to reassure them that a cure is coming and that this is the biggest day of their life as a cure is a real hope. Be there for them. There will be fights in the family so be prepared and it is okay – you will come out the other side. Hang in there!

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Wroxham & Hoveton Lions Presentation Night

£250 donation kindly received from Wroxham & Hoveton Lions by the charity trustees.

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Diabetes Norfolk – Radio Interview

Listen to an interview with Lucy Webster on Radio Norfolk talking all things Diabetes earlier this year.

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World Diabetes Day – Saturday 12th November 2022

Get active and celebrate World Diabetes Day with us at the University of East Anglia in Norwich.

Click this link to find out more!

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Royal Norfolk Show Sponsorship

Diabetes Norfolk were delighted to sponsor the Royal Norfolk Show this year.  A prize and speech was provided by trustee, Fenella Littleboy, for the best pig! As pig insulin was used for many years to treat diabetes we thought it fitted well. It was great to publicise the Diabetes Norfolk charity as well as supporting the Norfolk Show.
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A message from our Patron

Having both been diagnosed with T1 diabetes in our teens, my brother, Kip, and I have each experienced the condition for over 50 years. In fact, between us we can, dare I say boast, amass 118 years of living with diabetes.

Back in those early days we would use glass syringes with metal needles that had to be sterilised every 6 days and stored in surgical spirit, and learned our blood sugars once every 6 months after a tediously long 2 – 3-hour long appointment at our nearest hospital.

There is no questioning the fact that advancements in both understanding and dealing with the condition have been huge in the intervening 50+ years much to the benefit of us as patients.

Insulin delivery is now with an injection device that more resembles a slick fountain pen than a syringe that can be used with the utmost discretion even in public places. Progress is now to automatic delivery pumps linked by technology to blood sugar readers and our mobile phones. And as for learning our blood sugars thanks to the Freestyle Libre system I now read my own sugar levels at least 20 times a day, and without breaking my skin suffice to fixing a new sensor once a fortnight.

It is such advances that Diabetes Norfolk and previously the Norfolk Diabetes Trust have helped to disseminate amongst the diabetes engaged population of Norfolk. Funding the training of nurses, producing patient information, purchasing extra supplies of technical products when the NHS can’t and to a lesser extent funding research. All patient biased and directed.

It is this work and funding that Diabetes Norfolk must continue to carry out. Without the generous support of the people of Norfolk this would not be possible. We continue to thank you profusely.

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