Ignorance

[Music&InsulinSavedMyLife]

Having a rant about my diabetes team at the hospital..because they annoy me!

I'm an overweight teenager, and I'm annoyed at people judging me for it, especially people jumping to conclusions as to the reason I'm diabetic.

My diabetes team don't seem to want to interact on a one-to-one basis, they claim to want to, but assume that everyone is the same.
I said I wanted to lose weight when I first got diagnosed, and that I was going to cut most sugar out of my diet because if I'm in the mindset that I can't eat sugar, then I wont. My dietician is stick thin, and ranted to me about the things I should be eating, yet when I told her that's what I was eating she said I was a liar. My specialist, who acted as my dietician when I was first diagnosed is overweight herself, and a lot more than what I am, and had the same reaction to what food I was eating. She also doesn't seem to understand that I don't like talking on the phone, I hate it, and because the NHS believe that appointments are a waste of time she thinks it is the only option. I asked if I could email her and she just laughed, yet when I don't phone she gets annoyed and phones my mum. I did tell her.

The worst problem I have at the moment, is with the doctor I got referred to at the hospital. English isn't his first language, which isn't a problem for me, but he gets annoyed at me when I can't understand him, like its my fault. I am in contact with a friend of my sisters who is in her 30's, has a child and was diagnosed at my age so has been a great help with little tips and tricks to help me get through, but when I told my doctor this he got angry saying that I don't need someone like that because the hospital has an excellent service, but you can only phone in, so I refuse to use it. The final bit of my rant, is when I told him about being on here. He was really pissed off at the fact that I had found help, even though I was advised to come on here by Diabetes UK when I was diagnosed before Christmas and needed help, yet my diabetes team had Christmas off, so I had no help.

As a teenager, I'm moody enough, and over think a lot of things, but when they have a go at me for getting help it annoys me a lot. I'm also sorry for anyone reading this 😛 I didn't mean for it to be so long, I just wondered if anyone else had the problem. It's not like I'm not doing anything about my weight, they told me I couldn't go on the Slimming World diet again until I can control my diabetes enough. Which has been proved that I cannot control it yet, because when I was writing this I ended up having a hypo :L I also go to the gym and swim a lot due to training for a 22 mile swim over 6 weeks to raise money for Diabetes UK, yet I'm in the wrong! Grr!

 

[Northerner]

Hi, very sorry to hear that your 'team' has such a negative and arrogant attitude It sounds to me like you are doing extremely well in spite of them. The first and most important quality that a healthcare professional must have is good communication skills. This is particularly true when considering a lifelong condition like diabetes, and even more so when the patient is a teenager.

I understand your reluctance to speak on the phone, I also have a problem with them, and prefer to put my thoughts down in an email. The fact that your suggestion was laughed at shows how behind the times they are.

Try not to let things get to you and take from them what you can. Be prepared to stand your ground and persist with your questions if you feel they are not being addressed adequately. Oh, and joining this forum is one of the best moves you could have made. Your diabetes is something that your team deal with for less than 1% of the year - the rest of the time it is YOU that is dealing with it. You may lack their knowledge at this stage of the ins and outs of things, but each day you will be gaining experience of how it affects YOU and what you need to do to maintain a good balance in your life. Diabetes can be very isolating - Type 1 is actually relatively rare, so it's only by using a forum like this that you can share your experiences with people in similar circumstances.

I've only 'known' you a couple of days, but I have already been very impressed with how you are handling things, and your determination to tackle the other things in your life, so I'd like to say 'well done!', be confident that, despite the paucity of your team's support, you will achieve your goals 🙂

 

[MeganN]

I hate it when I see a post like this. It is unfair when health care professionals do not help those actively asking for it and trying to make them selves as healthy as they can be.

I know how you feel. I was diagnosed t2 very young (24yrs old) and I needed insulin but my surgery would not prescribe it. I had to refer myself back to the hospital which was unacceptable. I didn't fit the expected criteria, I'm much more similar to t1 but they wod not listen.

If you are not happy then please find another Dibetes care team or put in writing a complaint about the way you feel wih the one you are with. I imagine if your parents knew how you felt then they would be furious! Mine were and I'm not even under their care anymore 🙂.

I hope you get them help you need soon. In the meantime we are all here for you

 

[LeeLee]

With help and support you will get through this, and you will regain control. If that support comes from others who have D rather than a load of patronising so-and-so's, then so be it. Once you have found your way, no doubt the medical profession will take the credit, but who cares? It's YOUR body, YOUR health at stake.

 

[Caroline]

I'm with you on people like dieticians who are stick thin and telling you that what you have said is less than truthfull.

I have always been overweight (I am now 54) and have always struggled to take the weight off with out the help and support of others.

There doesn't seem to be an awfull lot of help and support round these days, especially for those of us who wish to loose weight for health reasons. Many people find slimming world and weight watchers helpfull, but when you are working to a budget they can also work out expensive too.

Don't appologise for a long post, you had a lot to say and needed to get it out of your system. I hope it has helped.

I know the support here isn't face to face but it is here all the time, even if you only read through other posts to find out what others are doing and feeling. It may take a while for someone to get back if you post in the middle of the night, but at least you can post and know someone will read and respond.

 

[Pumper_Sue]

Hi Music&InsulinSavedMyLife,
are you still in the childrens/teenager clinics? If so go with your Mum and complain. In fact put it in writing as to how you feel your treatment/lack of is having an adverse affect on your well being.
Send copies to the consultant dsn,dietiction and the CEO. Also involve PALS.
Personally I think your treatment is a disgrace.
Keep your complaints short and to the point ie bullet points. Then ask how they are going to address them. Hopefully you doing this will help you and all other youngsters who develope diabetes.

Another option, do you have another hospital that is near enough for you to get to for clinics and help?

 

[megga]

Well i think your doing brill, your a teanager, bloody hell my daughter wont speek on the phone, she just want to text (and me being an old fart cant understand half the text.)

You very young and already we all can see that your taking this seriously, and to be honest your health team should find that inspiring. i have been a diabetic for 8-9 years and only just getting myself sorted out, and thats JUST because of this forum.
The problem with some people is they dont like being wrong and they know best, but they dont live day to day with this, they just read from a book and there right.
Things are hard enough for you, and support is what you need, and to me it dont seem like your getting it.
Your doing great, if i had half the get up and go as you when i was first diagnosed, my controll would have been better years ago.

 

[DeusXM]

The other issue is (and this is a lot to take in) that the diet most dieticians will tell you to eat is also designed to make your diabetes treatment as complicated as possible, and make you gain weight.

Although even Diabetes UK is now ever-so-slowly waking up to the modern world and starting to realise that carbohydrate management might be something they need to think about, the majority of dieticians are still basing their information on the belief that everyone with diabetes is always 15 minutes away from having a hypo and therefore must stuff themselves with carbs all the time. I don't know exactly what your dietician has suggested to you but there is very compelling argument to be made to cut down not only on sugar, but also things like bread, potatoes, pasta etc - these things particularly cause people with diabetes to put on weight.

 

[Monica]

I'm so sorry you have such a rubbish team!

You have far more "EXPERTS" on this forum than in your team. I have been told how many years it takes to become an expert:

parent/patient 2 years 6 months
nurse 6 years 1 month
consultant 16 years 2 months

 

[Northerner]

I'm so sorry you have such a rubbish team!

You have far more "EXPERTS" on this forum than in your team. I have been told how many years it takes to become an expert:

parent/patient 2 years 6 months
nurse 6 years 1 month
consultant 16 years 2 months

And to top it all we have expertise in OUR diabetes like no-one else! (Also including a parent! 🙂)

 

[delb t]

To add we never found the 2 dieticians we encountered much cop- what we really needed at the start were dieticians that knew the ins and outs of sport etc not how to draw lines around a cereal bowl to save time -and I forget thankfully how many times I saw the healthy eating plate - your doing really well -keep at it

 

[Dory]

Hi Music&Insulin,

I would definitely advise you writing a formal complaint (either on your own or with a senior figure if you prefer). I have had a number of bad experiences with my diabetes team too and found that telephone complaints get conveniently lost in the system.

If that doesn't help, I'd definitely look around at other hospitals that could take you.

Just out of interest, what hospital are you currently registered with/where are you located?

Either way, I take my hat off to you for trying so hard and being so sensible about your diabetes. It's a hard thing to deal with and a lot of teens (myself included) have ignored management of it thinking it will all 'be ok'. So ultimate respect to you!

 

[AlisonM]

I'm with the folk who suggested making a formal complaint and sending copies to all concerned. You may be a "stroppy" teenager, but you also clearly know exactly what you need to do and are doing your absolute best to achieve the goals set. I suggest making a list of the issues you want to raise, keeping a food-exercise diary and taking your mum to appointments with you are all ways of ensuring you are taken seriously. From reading your posts, I can tell you are very bright and trying to work your way logically through a very complex puzzle. Don't despair, you're doing all the right things as far as I can tell, so stick to your guns.

 

[Music&InsulinSavedMyLife]

Hi, very sorry to hear that your 'team' has such a negative and arrogant attitude It sounds to me like you are doing extremely well in spite of them. The first and most important quality that a healthcare professional must have is good communication skills. This is particularly true when considering a lifelong condition like diabetes, and even more so when the patient is a teenager.

I understand your reluctance to speak on the phone, I also have a problem with them, and prefer to put my thoughts down in an email. The fact that your suggestion was laughed at shows how behind the times they are.

Try not to let things get to you and take from them what you can. Be prepared to stand your ground and persist with your questions if you feel they are not being addressed adequately. Oh, and joining this forum is one of the best moves you could have made. Your diabetes is something that your team deal with for less than 1% of the year - the rest of the time it is YOU that is dealing with it. You may lack their knowledge at this stage of the ins and outs of things, but each day you will be gaining experience of how it affects YOU and what you need to do to maintain a good balance in your life. Diabetes can be very isolating - Type 1 is actually relatively rare, so it's only by using a forum like this that you can share your experiences with people in similar circumstances.

I've only 'known' you a couple of days, but I have already been very impressed with how you are handling things, and your determination to tackle the other things in your life, so I'd like to say 'well done!', be confident that, despite the paucity of your team's support, you will achieve your goals 🙂

Thank you, I think I am getting my diabetes under control without them really. I never really knew type 1 diabetes was so rare until the other day I came across the figures on a facebook page. To me it has always been a word that everyone knew, so I assumed it was common knowledge.

I think in my head I'm not 16, if that makes any sense, my siblings are a lot older than me as they are 33 and 36. I never really had any child interaction and a lot of my friends are older, so I think that helped a lot. I had been quite ill before I was diagnosed so finding out that I could control how I feel was a bonus.

 

[Music&InsulinSavedMyLife]

I hate it when I see a post like this. It is unfair when health care professionals do not help those actively asking for it and trying to make them selves as healthy as they can be.

I know how you feel. I was diagnosed t2 very young (24yrs old) and I needed insulin but my surgery would not prescribe it. I had to refer myself back to the hospital which was unacceptable. I didn't fit the expected criteria, I'm much more similar to t1 but they wod not listen.

If you are not happy then please find another Dibetes care team or put in writing a complaint about the way you feel wih the one you are with. I imagine if your parents knew how you felt then they would be furious! Mine were and I'm not even under their care anymore 🙂.

I hope you get them help you need soon. In the meantime we are all here for you

I suppose all they can do is what they have been taught out of textbooks. But there is no feeling in it and no interaction, like we are just figures and facts.

I'm not one to cause much trouble, I am hoping as I get older they can progress, and I don't think I will be staying in my town for too long anyway, so I will find another one when I can!

Thank you 🙂 It means a lot 🙂

 

[Music&InsulinSavedMyLife]

With help and support you will get through this, and you will regain control. If that support comes from others who have D rather than a load of patronising so-and-so's, then so be it. Once you have found your way, no doubt the medical profession will take the credit, but who cares? It's YOUR body, YOUR health at stake.

I'd rather someone who knows what they are talking about talk to me about it. My specialist assumes she knows how I feel, when she can't, but she doesn't think I have a brain to realize this, I know I'm 16 but I'm not stupid haha

 

[Music&InsulinSavedMyLife]

I'm with you on people like dieticians who are stick thin and telling you that what you have said is less than truthfull.

I have always been overweight (I am now 54) and have always struggled to take the weight off with out the help and support of others.

There doesn't seem to be an awfull lot of help and support round these days, especially for those of us who wish to loose weight for health reasons. Many people find slimming world and weight watchers helpfull, but when you are working to a budget they can also work out expensive too.

Don't appologise for a long post, you had a lot to say and needed to get it out of your system. I hope it has helped.

I know the support here isn't face to face but it is here all the time, even if you only read through other posts to find out what others are doing and feeling. It may take a while for someone to get back if you post in the middle of the night, but at least you can post and know someone will read and respond.

I have managed to lose a stone since I was diagnosed in December, if I lose anymore they will moan I'm losing it too fast but moan I haven't lost enough...can't win!

I find Slimming World wasn't too expensive and I didn't buy anything I didn't already, I can't stand Weight Watchers after looking at the packets of their food, they are full of sugar!

It has helped, I tried talking to my mum, but we don't have a great relationship as I have had a lot of health problems in the past, and she always assumes I am faking or doing it on purpose.

It's great knowing that people take the time to read it, and have their own experiences to relate with. Better than being on your own!

 

[Music&InsulinSavedMyLife]

Hi Music&InsulinSavedMyLife,
are you still in the childrens/teenager clinics? If so go with your Mum and complain. In fact put it in writing as to how you feel your treatment/lack of is having an adverse affect on your well being.
Send copies to the consultant dsn,dietiction and the CEO. Also involve PALS.
Personally I think your treatment is a disgrace.
Keep your complaints short and to the point ie bullet points. Then ask how they are going to address them. Hopefully you doing this will help you and all other youngsters who develope diabetes.

Another option, do you have another hospital that is near enough for you to get to for clinics and help?

No, I'm at the adult one. When I was admitted to hospital they started me in the children's ward, but decided I was mature enough to be on the adult ward. I had to go see the adult specialist as they decided it was easier than moving me in a year, though I have an appointment with the children's one in a few months (work that out) but I think it was more to save them money.

I might think about writing a complaint if they do not change, though I hat causing a fuss,

And no there isn't anywhere else I can go :/ My mum wont let me either, and as I usually go with her because they want an adult present, I can understand why.

 

[Music&InsulinSavedMyLife]

Well i think your doing brill, your a teanager, bloody hell my daughter wont speek on the phone, she just want to text (and me being an old fart cant understand half the text.)

You very young and already we all can see that your taking this seriously, and to be honest your health team should find that inspiring. i have been a diabetic for 8-9 years and only just getting myself sorted out, and thats JUST because of this forum.
The problem with some people is they dont like being wrong and they know best, but they dont live day to day with this, they just read from a book and there right.
Things are hard enough for you, and support is what you need, and to me it dont seem like your getting it.
Your doing great, if i had half the get up and go as you when i was first diagnosed, my controll would have been better years ago.

Haha I speak to my mum on the phone, but others I just don't like it, much rather it be face to face or through text/online.

I think bing in Hospitality and doing first aid courses helped me a lot, and (this is confusing) my half-sisters uncle died from loosing his leg up to his hip, so she doesn't want that to happen to me.

I think the only thing keeping me going is knowing that others do the same, and have survived it. And making plans to raise money to help others is definitely taking to the next goal post!

 

[trophywench]

Well to be fair to your specialist, actually I know a few teens and most of them don't have a brain between them. Only interested in FB to the exclusion of everything else practically.

However one of em does.

And you sound like him to me. Quite sensible mostly (and then does summat potty once in a while, but at least he has the nous to be sheepish about it when he mucks up!)

I have a really great nurse. And she told me 'We don't treat your diabetes. We can't treat your diabetes. YOU treat your diabetes and the very most we can do, is try and help you' And help me they do.

She also never says I've been stupid - even when I defo have. She says thins like 'Perhaps that wasn't the best plan, Jenny' and grins at me.

You deserve someone like her. The od thing was you know, about a month or two after I said to the NHS (in my head) Well - up yours then, if you won't help me, I'll help myself ! and came onto the internet to find help (and got it like you are) - the NHS changed and suddenly - they DID help me.

I really really hope that happens for you to.