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Type 1 what to do when don’t feel as I’d get the care I need!

C

Clairebee

Member
Messages
11
Hi could anyone give me any information on how I change the hospital I’m under for my diabetes care? Iv been type 1 21 years since I was 18 I was diagnosed there and for the last 4 years Iv been asking for support to get my hba1c down to get pregnant Iv been constantly told no it’s too poorly controlled but no help assisting me in correcting it Iv been asking for a pump since last year I leave messages for diabetic nurses no one gets back to me for months on end and there’s no direct number Iv rang crying pleading for help no response!! the doctors keep cancelling and delaying my appointments! I’m 39 now and I want advice on trying to move care provider before if I have to apply for ivf I’m over the age the nhs will help! Any suggestions greatly appreciated x
 

Hi there, sorry to hear you’re having such a hard time of it. I’m not sure exactly how to change care provider, but I’m sure someone on here knows how to do that and can give you some advice. If no one answers your calls or keeps canceling your appointments I’d say that’s a case for changing care immediately.

To my knowledge the diabetic clinic in a hospital should run a pre pregnancy clinic and well as the pregnancy clinic. In this clinic the doctor and nurses and dietitians work with you to get your blood glucose levels to the optimum levels and so regular blood testing is carried out as well as eye checks etc. They are very supportive and help you get great results. I know of this in Newcastle General Hospital. I’m not sure where you are based but this is what you should be expecting.
I’m sure someone will be along soon to help you with the knowledge to be able to get change of diabetes care team, all I can think of is a change of GP practice to one near to a better hospital as you would automatically fall into their catchment area.
What is you latest hba1c? Best level for pregnancy would be 6 or under, but I was told that anything under 7 is acceptable and then they’ll get you on the right track.
 

Hi there, so sorry to read of your problems with your diabetes care, hospitals have a duty of care to helpo and support their patients. I found these link's that may be helpful :-
https://www.nhs.uk/common-health-qu...ents/can-i-choose-where-to-receive-treatment/

https://www.citizensadvice.org.uk/health/nhs-healthcare/nhs-patients-rights/

Good luck x
 

Hi Claire, it would be lovely just to be able to change care providers when we want but realistically that is probably not going to happen. Even if you are able to change what's to say the new ones won't be exactly the same as the old ones? Are you able to elaborate on what your exact issues are, you say that they say you are 'poorly controlled', what does this mean to you and them? Is your day to day management the issue and your A1c reading? I don't know your medical history at all and there may be underlying complications but it may be easier to adjust your own management than rely on a care provider to 'help' you if you don't qualify for a pump. x
 
Sounds a lot like my clinic! Have you spoken to your GP about the clinics helpfulness? they maybe able to re-refer you to another hospital?

If the clinic can't/won't help with your control we can try if you want us to.
 

Thanks for the reply I was meant to be under the pre pregnancy clinic nurse but haven’t seen anyone there since last spring I haven’t had a hba1c since last sept in the hospital but my libre app on my phone estimates 7.9 don’t know how accurate that is but I hope it is as Its improved since my last one at the hospital
 

Hi,
I found when I was able to use Libre (I can’t now as after a few months I developed a really terrible allergic reaction to the adhesive) that my Hba1c was actually lower by 0.4/5points than my Libre estimate. So hopefully you will be nearer the 7.5 mark

Anyway, I don’t see why you can’t just present yourself at your diabetic clinic at the hospital you’re under for your diabetes care and ask to have an appointment with the pre pregnancy clinic. I remember at my diabetes clinic this specific clinic was on Mondays every two weeks, so there could be a waiting list but it would be ridiculous to think that you’d have to wait a year, most likely a 4 week wait at the most. So I would advise you to show up at the reception of your diabetes clinic and ask for this appointment, if they say you have to be referred by a consultant diabetes specialist then ask for that appointment. Don’t leave until you get one.
You are the person who wants to get pregnant and who wants to do it in a responsible way without damage and complications to you or your child. In the meantime I’d advise to start taking 5mg of folic acid as you have to be taking this for 3 months before getting pregnant. I think you have to get this on prescription as it is a higher dose for diabetics than “normals”.
Wishing you luck!
I’m sure you can get your hba1c down to less than 7 in 3 months whilst you’re on Libre.

Plus people on this site are very supportive in helping you focus on lowering your hba1c and have lots of tips even if no one is a medic. Support is sometimes what helps the most. I also think there is a section on the forum on pregnancy so you could always hook up with others trying to get pregnant or mothers to be and find out about their experience.
Take care and let us know if you managed to get that appointment.
 
Thank you so much Gemma that’s great news about the libre being higher than estimated I have been on folic acid from my docs for over a year and have also recently started taking other vitamins to boost my chances of conceiving feel very positive after this thread thanks for everyone’s help!
 
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