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Fits etc

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
morgans-mummy said:
well am p****d off to put it politely!!!!

just spoke to nurse & they have still not arranged the cgms!! STILL waiting for probes apparently!

and as for the pump they cant decide weather they think she should go on it or not

as for morgans hypo that she has had yesterday night they want me to reduce her tea time insulin by half a unit! myself i think this is pointless effort as most of the time she runs high!!! its an absolute joke- just gone off on a flyer with one of nurses and told her to stop fobbing me off

4 and a half months for an MRI scan we've been waiting this is after the first EEG scan showed something up!
still waiting to be told about another EEG scan which she has apparently been forwarded for
sick of it to be fair!!!!
Click to expand...


Hi,
Have they told you what the delay is? Surely its just a matter of ordering the sensors for the CGMS? It really shouldnt take long! Do they normally use their CGMS for other children at the clinic? They must know how to get hold of the sensors? This isnt good enough as your little girl is suffering for no reason.😱

What is their reasoning for dithering about the pump? Your daughter has tried injections - dont work for her - if they got their act together you would know whether its hypos causing the fits or whether there is another problem.

To be honest, I would be livid about this, and if you cant get her on a pump then you must ask for MDI as mixed insulins just dont work - they are phasing them out as they cause hypos late morning and highs late afternoon! You need to tell them what you want for you daughter - not the other way round. At the very least, they need to get the CGMS NOW - and also get her onto MDI - NOW! They are there to support you and advise you. They dont sound as if they are doing that. Do your clinic have many pumpers there? Perhaps they arent pump trained?

I cant help with the MRI as i dont know enough about them or how long you should be waiting - but it does seem a stupid amount of time to leave a child having fits! Are you going through the GP for this MRI or the clinic? Perhaps you could ring your GP and tell him whats happening?

I dont blame you at all for being angry - you have every right to be. You are a great mum just trying to get the best care for your child and dont let anybody put obstacles in your way. Could you ring them back and ask why there is a delay or do you have email contact?😡🙂Bev x
 
morgans-mummy said:
well am p****d off to put it politely!!!!

just spoke to nurse & they have still not arranged the cgms!! STILL waiting for probes apparently!

and as for the pump they cant decide weather they think she should go on it or not

as for morgans hypo that she has had yesterday night they want me to reduce her tea time insulin by half a unit! myself i think this is pointless effort as most of the time she runs high!!! its an absolute joke- just gone off on a flyer with one of nurses and told her to stop fobbing me off

4 and a half months for an MRI scan we've been waiting this is after the first EEG scan showed something up!
still waiting to be told about another EEG scan which she has apparently been forwarded for
sick of it to be fair!!!!
Click to expand...

Well I'm p***********d off as well for you.

Sorry I didn't reply yesterday have only just looked here.

Ok the pump - Your consultant is wrong. It is not up to you to secure funding. The pump is about that much and the consumables (canulas, insulin reservoirs etc) are about ?1000 to ?1500 per year ish. However lots of hospitals do it differently. Some hospitals buy the pumps themselves and the PCT fund consumables. Some hospitals get the PCT to fund the lot. Either way is ok.

However if your child's HbA1c is over 8.5 you automatically qualify. If she is having unpredicted hypos which are hard to control or if she is scared of hypos etc etc, she qualifies, this is all under the NICE guidelines.

If a consultant writes to a PCT telling (not asking) them that their patient is going on a pump then the PCT HAVE to fund the pump and consumables (or just comsumables, whatever is being asked for). They CANNOT say no.

You are 100% within your rights to tell your DSN this. I hope I have got in before she rings you. This is totally right, I'm not making it up.

I hope that helps. Ask anything and I'll see if I can help with pump questions. 🙂
 
Ring your nurse back or consultant and tell them about the NICE and PCT and funding etc etc.
 
the clinic is at Barnsley District Hospital where she sees the diabetiic nurses and the consultant - the consultant is aware how long we have been waiting for the MRI as he was the one who requested it.

He has basically said that he wants to see what the cgms shows before he goes any further on the pump! so i now have to wait until they get there arses in gear for these probes to come so she can go onto this monitoring.

the nurse said well i will tell the the doctor that you are expressing concerns regarding this- so that was it i went off on one- my words been " I am NOT expressing concerns I AM tellig you that I am very annoyed with how the situation is been handled"

im lost as to where else to turn or what else to do! i feel like just managing the diabetes myself as i seem to do a beter job than them - i feel like not getting back in contact with them now and just going to the MRI scan and attending the EEG when it eventually comes back through for a second date going back for the results so wound up!
 
Yep I would be wound up too.

You do know you can change hospital don't you? You can easily transfer to a better one. You may have to travel but lots of us do. I do a 6 hour round trip in a day to get to our brilliant hospital, 3 three and three back, worth it all the way and Jessica thinks so too. There are now 14 from my area who do this same trip. There are loads of people in the Children with Diabetes email group who have now transferred to get better care.

Just say the word and I'll do my best to find you the best hospital nearest to you, who don't bother with mixes, MDI and pumping all the way. No pressure if I find out, its your call, your family, I'll just help if you want me to.

🙂
 
well it appears that one diabetic nurse does not know what the other diabetic nurse is doing!!!
they have said about the cgms that they have recieved the probes but would prefer not to start it until after next wednesday as they are on holiday!!! what a joke told them its not good enough and that i want it doing sooner
waiting for a call back now! 😡
 
morgans-mummy said:
well it appears that one diabetic nurse does not know what the other diabetic nurse is doing!!!
they have said about the cgms that they have recieved the probes but would prefer not to start it until after next wednesday as they are on holiday!!! what a joke told them its not good enough and that i want it doing sooner
waiting for a call back now! 😡
Click to expand...

Well done for ringing them back! If you dont ask you dont get. Lets hope they can get your little girl on the CGMS sooner than next week - after all diabetes and fits dont take a holiday. Let us know what they say.🙂Bev
 
well i have emailed john davis and within 1 minute of the email been sent he rang me!! hes made me feel loads better and told me to be reffered to Leeds Hospital to see a great pedatric doctor
made me feel much better after having a chat with him 🙂
 
Excellent. John Davis is an absolute star and comes through rain or shine. He is right Dr Fiona Campbell at Leeds is second to none. The Leeds clinic and UCLH (London Prof Hindmarsh - where we go) are the top clinics for paediatrics in the UK. We have found none better than them. I have met Fiona Campbell last year and I heard her talk at the Friends for Life Conference. She is lovely. She is kind and gentle and softly spoken but boy she does not pull any punches when it comes to the kids and diabetes. You would be much better off at Leeds.

If you don't want to ask your consultant for a referral, you can ask your GP to do it for you.

Good luck and I hope you get an answer about the CGMS.

🙂
 
i am going to make an appointment with my GP and ask to be referred to Leeds and it is Fiona Campbell that he wants me to go and see - i feel strangly reliefed that someone has finally listened to me!!!
i know you guy have on here but it dont seem the same as when you here someone actually tell you that your not failing your daughter and that the nurses should be giving you more attention!! 😛
 
morgans-mummy said:
i am going to make an appointment with my GP and ask to be referred to Leeds and it is Fiona Campbell that he wants me to go and see - i feel strangly reliefed that someone has finally listened to me!!!
i know you guy have on here but it dont seem the same as when you here someone actually tell you that your not failing your daughter and that the nurses should be giving you more attention!! 😛
Click to expand...

Wooopeeee! So glad you are getting somewhere now - this situation could not have gone on. Hopefully your GP will do the referral ASAP and you can get your little girl the help she needs. Do let us know how it goes.🙂Bev
 
I should have added that whilst Leeds and UCLH are the greatest, there are other hospital who are great and aspire to be like the other two. Bev's hospital for instance seems ok. They were a bit hard to persaude to start with but our Bev worked her magic and the consultant and nurse now work with Bev and in my eyes that makes a great team. They are learning. I know they asked Bev what makes a good pump start, so they clearly want to learn and get it right.

I just wish that all the other hospitals out there stop mucking around and get clued up as well.

Morgans-mummy, you are a great mummy, you have sought to find help and better care for your child, what gets better than that eh ! 🙂
 
Hya Morgan Mum

Sorry to read that your little one is not well and good on you for fighting it all the way. Getting off mixes is best and getting a pump is fantastic and I hope you win the battle. Im trying to get my son off mixes. fingers crossed in a weeks time he will be on MDI.

Have you got the date for the MRI brough forward? they should not make you wait that long for a scan for a little one having these sort of problem. I can't offer any advice really and i see adrienne and bev are helping ( like they are for me, they are a great help to many and i don't think they realise how great they both are) but just wanted to say your a fantastic mum and keep fighting...

Gem xxx
 
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