Asking to be referred ?!

[Marfmama]

Hello - after a bit of advice, so iv said on here before that since moving from Liverpool to goole my level of care has dropped dramatically, I was diagnosed type 1 two years ago and in Liverpool I was seen regularly by consultant, nurse and dietician. I moved to goole at Christmas and had to book my own hba1c after waiting months for the doctors to get back to me, I had the blood taken for it but no one discussed the results with me, iv not been asked in for a foot check still and when I asked the nurse about doing a carb counting course she was very blasé and said the nearest one was in Scunthorpe (not way to get to unless you drive and even then it's a 45 minute drive) and said oh your probably don't need it anyway - didn't ask me any questions about how I'm coping... Basically they seem to be assuming iv had this forever and don't need any help but I really feel I do. I haven't seen a consultant since moving here - how do I get one?! Can I get myself referred to the hospital? My mum is a nurse and was quite concerned when I told her all this. I'm struggling wih hypos a lot at the moment and iv lost weight which I didn't really want, I now weigh 49 kg (7.5 stone?!) and I just don't feel well - I am working hard to try and take charge myself and I'm studying te books but really want a medical team to back me up a bit!! I've read on here before about people not being happy about the care they are receiving so just wondered if anyone had some advice for me - thanks in advance!


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[donnellysdogs]

Tbh.. If you want medical care then you have to book the appointments and ralk to doctors and nurses.....

Its a cruel world and unless you make these steps you will get ignored..

Computsr systems are onky as good as the persons using them.... And this can lead to diabetics who gain a good hba1c being ignored because according to the computer you fall within the normal barriers... HOWEVER.... YOU could be having large hyper and hypo's, be feeling really s**t, depressed and you will be ignored because of tge computerised systems.. And the way our lives and nhs now run.

Basically, it is down to you in so many scenarios... This will be one...

I wish it was all different....

 

[Daibell]

Hi. I'm afraid what most of us have found is that you have to be pro-active in various aspects of diabetes care. Although my DN gives me a bloods form and suggests an appointment month it is up to me to get the bloods done and book a surgery appointment with the DN around 2 weeks following the bloods so she has the results ready to discuss and carry out the usual checks. I'm lucky that my DN is excellent and says I can make an appointment or email her any time. I know that not all surgeries are the same but you can always book an appointment. Note that most diabetes patients never see a consultant unless there are complications. It sounds like you need more guidance on insulin injection levels, carb counting and so on and your GP/DN must provide this or book you on a course. I'll be honest ref carb-counting my DN gave me a good leaflet and that was enough together with this forum and food labels. My DN did give me some guidance on my carb ratio after she looked at a few days test results. I'll be honest ref the Dietician much of what they can offer can be obtained from these forums in the form of a healthy low-ish carb diet. It may be useful for you to come back onto the forum with some specific Type 1 questions about carb-counting, carb ratios and balancing Basal and Bolus. Most of us are not professionals but there is a lot of practical experience we can share. Do ask your surgery reception if necessary what your HBa1C was. They are obliged to give you these and my surgery always does if I ask. Don't forget that if your surgery is not co-operative then do discuss this with the Practice Manager and consider moving practice if there is a local choice.

 

[donnellysdogs]

I found out on Friday that you can ask your go for a carb counting course ANYWHERE..... For example.. In almost 30 years I have never had a carb counting course... I went to a research appt at a very large hospital in the midkands on Friday.. Out of my pct, 80 miles away, but I could ask my gp to go on their course!! AND they have availability!!!

The more you do for yourself.. The more you will gain for yourself.. Dont be afraid to speak up.

Peesonally, although I get on fantastically with males... I have a better, understanding with my female go than I have had with any male gp.

Have a go at getting some appointments yourself.....you will wait a very long time for people to approach you....

 

[donnellysdogs]

Ask directly for what you want. If you want to see a consultant -ask.

A carb counting course is worth a 45 min drive.... It good just to get that... My drive would be 80 miles away to get to the carb counting course if I wanted it....

Nothing (rarely) good just lands at your feet in this world...even if you won the lottery you would have to actually have to make the purchase.....

Do what ever it takes..... But do talk directly and tell people how you feel and what you want.... There usnt many genuine mind readers out there!!!!

 

[Marfmama]

Thank you for all the replies - I think I was spoiled in Liverpool, I was always being sent letters and having constant appointments and my consultant was very strict with me about my hba1c results, my nurse was amazing and so informative, but I guess they were with me at the point of diagnosis and saw me when I was very ill so it's different really. I didn't realise diabetics didn't see consultants regularly, I had been under the inpression it would be 6 monthly or yearly. You are all right, I just need to be more pro active. Thank you for the support.


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[duranie]

Every type 1 is 'supposed' to receive secondary care - ie a hospital consultant.
You cannot refer yourself, but get in touch with your local PCT's PALS service to complain.
You are being denied what is your legal right!