Type 1 diabetes

stevenson40 · Jul 25, 2023

I was diagnosed as Type 1 diabetic at the age of 12 in May 1957. My step father paid £10 to make me a life time member of the BDA now Diabetes UK.
I was at boarding school then and had to cope on my own with three injections a day and carbohydrate control.
I have worked and travelled all over the world.
I am recovering from Stage 4 Primary Melanoma Liver cancer. The tumour was removed over four years ago and weighed 2.6 kg. I also have Age Related Macular Degeneration, severe arthritis, polymyalgia and numerous other problems.
I am still living at home with my wife.
I do find that because I have controlled my diabetes well the diabetic clinics tend to ignore me.
I have brittle diabetes and find it hard controlling my insulin doses.
I would like to try a pump. I was told too expensive, but they give it to children with no problem!
Keep breathing and smiling.

Juicyj · Jul 25, 2023

Hello @stevenson40

Lovely to meet someone who has managed with this condition for as long as you have - well done

My tip is to get your DSN on your side, build a good relationship with them so in turn they will understand more about your issues with control, you're never too old to get access but having a good strong relationship with your team is the best starting point.

A system such as the Tandem Slim with the G6 sensor is a good way to balance out the peaks and troughs with BG control as it works intuitively to manage levels based on the sensor readings, there's a lot of input to start with to get ratios adjusted and fine tuned, and you still need to input for carbs, but it's a system that would benefit brittle diabetes.

Hope you can find someone there who can support you and help with gaining access.

stevenson40 · Jul 25, 2023

Juicyj said:
Hello @stevenson40

Lovely to meet someone who has managed with this condition for as long as you have - well done

My tip is to get your DSN on your side, build a good relationship with them so in turn they will understand more about your issues with control, you're never too old to get access but having a good strong relationship with your team is the best starting point.

A system such as the Tandem Slim with the G6 sensor is a good way to balance out the peaks and troughs with BG control as it works intuitively to manage levels based on the sensor readings, there's a lot of input to start with to get ratios adjusted and fine tuned, and you still need to input for carbs, but it's a system that would benefit brittle diabetes.

Hope you can find someone there who can support you and help with gaining access.

Many thanks Juicyj for quick reply.
My issue is with the DSN. I saw her not long ago as they noticed I hadn't been seen for over two years.
I use Libra 2, but find it does not work well with my Android phone, so they cannot see my readings online at the clinic.
She suggested I try the Dexcom as it records and transmits data better.She gave me the starter set and told me she would notify my doctor to change my prescription.
Despite several phone calls and emails by me nothing happened, and nobody has been in contact!
I gave up.

lessci · Jul 25, 2023

stevenson40 said:
Many thanks Juicyj for quick reply.
My issue is with the DSN. I saw her not long ago as they noticed I hadn't been seen for over two years.
I use Libra 2, but find it does not work well with my Android phone, so they cannot see my readings online at the clinic.
She suggested I try the Dexcom as it records and transmits data better.She gave me the starter set and told me she would notify my doctor to change my prescription.
Despite several phone calls and emails by me nothing happened, and nobody has been in contact!
I gave up.

Please don't give up. Sadly it seems that those who shout loudest get the treatment they(we all) deserve. Those of us who accept the silence/status quo get forgotten. Make a fuss, be a pain, if you don't get results complain to the practice manager. If they don't know that there's an issue it can't be resolved. Just do it politely and don't attack the people personally

stevenson40 · Jul 25, 2023

lessci said:
Please don't give up. Sadly it seems that those who shout loudest get the treatment they(we all) deserve. Those of us who accept the silence/status quo get forgotten. Make a fuss, be a pain, if you don't get results complain to the practice manager. If they don't know that there's an issue it can't be resolved. Just do it politely and don't attack the people personally

Thanks Juicyj.
You made me laugh so I will try again.
What ever happens I will keep you updated.
My step father, my father died in 1946 on active service when I was about 18 months old, was a wonderful man and my £10 membership fee has proved to be a bonus!
Take care and best wishes to you all.

Tony337 · Jul 26, 2023

Hi
I have nothing but admiration for you managing all this time with primitive equipment in the early days....ive only had it 50 years!

I dont see a DSN or specialist as i find them irritating my results are literally that MY results and my last HBA1C was 42.
I hope that doesn't sound smug.

However i do have a forward thinking GP who basically gives me what i want and the practice nurses recognize my experience and don't lecture me.

If i needed a pump i would mobilize my GP but i realise not everyone is as lucky as me.
They have just been vote the second best practice in the north of england.

I wish you well

Tony

ElenaP · Jul 26, 2023

stevenson40 said:
Many thanks Juicyj for quick reply.
My issue is with the DSN. I saw her not long ago as they noticed I hadn't been seen for over two years.
I use Libra 2, but find it does not work well with my Android phone, so they cannot see my readings online at the clinic.
She suggested I try the Dexcom as it records and transmits data better.She gave me the starter set and told me she would notify my doctor to change my prescription.
Despite several phone calls and emails by me nothing happened, and nobody has been in contact!
I gave up.

I am sorry to read about the tardy service from your hospital DSN. Since the DSN does not respond to your emails, I would suggest contacting the endocrinologist’s secretary to ask for help. I hope that you do have a named Endocrinologist? I would expect to see the DSN minimum once a year, and the Endocrinologist once a year.

Once you get Dexcom 6, then you need to download Dexcom Clarity. I have mine both on my mobile and on my PC, with a link from the PC to the hospital diabetes department.

I am going to tell you about my situation, in the hope that it may help a little. I am of a similar age to you. My GP surgery seem to have no understanding about type 1, but the team at the local hospital have been good. I was fortunate that, for almost twenty years, I had appointments every six months with the same hospital diabetes specialist nurse. The endocrinologist, with whom I meet once a year, kept changing but for the last eight years I have had the same consultant, the best one of the lot. I raised the issue of a pump with the hospital team for ten years or so, before getting my first pump six years ago. I was given my second pump 14 months ago, and that one is linked to Dexcom 6.

Good luck.

stevenson40 · Jul 26, 2023

ElenaP said:
I am sorry to read about the tardy service from your hospital DSN. Since the DSN does not respond to your emails, I would suggest contacting the endocrinologist’s secretary to ask for help. I hope that you do have a named Endocrinologist? I would expect to see the DSN minimum once a year, and the Endocrinologist once a year.

Once you get Dexcom 6, then you need to download Dexcom Clarity. I have mine both on my mobile and on my PC, with a link from the PC to the hospital diabetes department.

I am going to tell you about my situation, in the hope that it may help a little. I am of a similar age to you. My GP surgery seem to have no understanding about type 1, but the team at the local hospital have been good. I was fortunate that, for almost twenty years, I had appointments every six months with the same hospital diabetes specialist nurse. The endocrinologist, with whom I meet once a year, kept changing but for the last eight years I have had the same consultant, the best one of the lot. I raised the issue of a pump with the hospital team for ten years or so, before getting my first pump six years ago. I was given my second pump 14 months ago, and that one is linked to Dexcom 6.

Good luck.

Many thanks ElenaP. I am glad to hear that you have had good experience. Take care.

Juicyj · Jul 26, 2023

Hello @stevenson40

Yes be a pain in the @&$@ !! They do tend to listen more to those who shout the loudest, that's my experience too, you do deserve the support so don't feel obligated to back down at all, go down to your GP and speak to them at the practice about this, phone calls and emails can fall on deaf ears but if you visit them they will have to do something, the G6 is a great device so I hope you can start on this soon.

Type 1 diabetes

stevenson40

Member

Juicyj

Expert

stevenson40

Member

lessci

Well-Known Member

stevenson40

Member

Tony337

Well-Known Member

ElenaP

Well-Known Member

stevenson40

Member

Juicyj

Expert

Type 1 diabetes

Member

Expert

Member

Well-Known Member

Member

Well-Known Member

Well-Known Member

Member

Expert

Privacy & Transparency

Privacy & Transparency