Moving to UCH

[Mandy]

After seeing consultant with my daughter yesterday made the decision to move to UCH, partly because not entirely happy with support given and now DSN gone on long term sick and her replacement is only available on a Friday but also because having talked about moving to a pump for the best part of a year and learning how to carb count have now been advised that that the hospital can't give her the support she needs to do this so moving seems the only answer.

Her consultant said that we would be quizzed as to why she wants the pump. Can anyone give us any idea as to what to expect as as this is worrying her. She's had lots of ups and downs since being diagnosed 2 years ago. Hba1c consistently high but a least come down at little and now 10.8.

 

[Pumper_Sue]

After seeing consultant with my daughter yesterday made the decision to move to UCH, partly because not entirely happy with support given and now DSN gone on long term sick and her replacement is only available on a Friday but also because having talked about moving to a pump for the best part of a year and learning how to carb count have now been advised that that the hospital can't give her the support she needs to do this so moving seems the only answer.

Her consultant said that we would be quizzed as to why she wants the pump. Can anyone give us any idea as to what to expect as as this is worrying her. She's had lots of ups and downs since being diagnosed 2 years ago. Hba1c consistently high but a least come down at little and now 10.8.

Hi Mandy,
as your daughter has a lot of ups and downs and a high A1c even though carb counting, then as long as she is testing and keeping a diary this will cut down the waiting a lot.
I can't remember how old your daughter is, but what needs to be said is what she thinks she will gain from having a pump and her expectations from one and also she needs to say she knows how much work is involved in having a pump.
Do some research into pumps as well so she understands how they work as well. IE, don't go into it blind folded.
This is a good place to start http://www.input.me.uk/
Good luck

 

[bev]

Hi Mandy,

To be honest - with an HBA1C this high it is essentail that your daughter gets a pump - any Consultant would be able to see this. UCLH will offer your daughter a pump on this basis alone - no need to make a case at all so dont worry - they are very pro-active about pumps and good care and they are absolutely brilliant. Your daughter will be pumping very soon so try not to worry. My son is at UCLH and it is the best team ever and we are so happy we moved there they are brilliant.🙂Bev

 

[Mandy]

Thanks that's a great help. I will get her to do some reading about the pumps but she knows quiet a bit already from the practical side as she has a lot of friends shes meet on a support week last year using them who have made her aware of the ups and downs. I think it was the fact the consultant used the word quizzed that worried her, as if she was to be interrogated.

 

[trophywench]

Well if it sheds any kind of light on what she might be asked, as an adult I had two questionnaires to complete concerning a) hypo awareness and b) "PAID" - Problem Areas in Diabetes Scale.

The first was factual - How many hypos, how low, do you always have symptoms at this lvel, that level, the other level, did you ever need help dealing with it, who from - family or medics etc etc.

The second was psychological - How does this or that affect you, Do you worry about this or that, Do you feel unsatisfied with your treatment, Do you 'accept' your diabetes etc etc.

The first I should think would easily apply to children with their parents input.

The second I would imagine is where the quizzing might come in a bit more to find out what gets to her. She shouldn't try to answer with what she thinks 'they' want to hear - she needs to be truthful. Little children are, brutally sometimes! LOL; older ones may have learned it's sometimes best to gloss over some stuff - for the sake of someone else's feelings etc

Plus the VERY important fact that a pump is hard work - everyone says that to begin with, I know - but as a person that's been diabetic for 39 years and only had her pump a month, it is really like being rediagnosed with Type 1 in the first place - lost, alone and all at sea. I have a great support network but I was surprised by this. For all 'everything I already knew ' I found I didn't know at all !! That little piece of info didn't sink in and it still hasn't completely sunk, as Pumper Sue will tell you - I got into a rage of frustration just a few days ago and made some daft adjustments ... so it happens, you get over it. But it can grab you unawares if it happens.

I think kids actually get on much better much quicker with pumps because you are like blotting paper when young and ready to soak up new info, aren't you? I hadn't had anything quite as 'new' as this thrown at me since 1972 .......

I hope your daughter is successful and she goes onwards - and downwards in this case!

 

[Ellie Jones]

Hi Mandy

I'm not sure if 'quizzing' is quite the right word to use, and your daughter shouldn't get stressed by it they aren't marking her or trying to find a way to say no to pumping, but it giving her the oppotunity to have her say in her treatment.

This does have many merits to it, it gives the team an indication at what level to pitch her training when she starts, and the more comfortable she is about using and wearing a pump the easier it's going to be, as she and you will be more up for tackling what it takes to get up and runing which can be a bit intense, needing a lot of copperation from her to enable both of you to get up and running with the pump...

A child who really doesn't want to use the pump isn't going be able to copperate with the parents on the setting up process leading to a very missable time for all, and not only not benefitting from the pump but likely making matters totally worse all round indeed...

If it gives her any consulation the first day I started pump training I was asked to write a short essay to 'How I thought my pump would aid me in control and what did I want to achieve from insulin pump therapy!' and yes this sits in my medical files, spelling mistakes bad grammer and awful handwriting 😱

 

[Adrienne]

Hiya Mandy
We are under that hospital and travel 6 hours in one day to get there and back (3 there, 3 back). I would travel more.

They are one of the top, if not top most respected paed teams in the UK and when the top DSN talks as seminars, many come to just listen to her. I don't know how old your daughter is but there are two doctors, there, one is the prof who we see and I've known him for 11 years, he is truly amazing. The other see the adolescents, I haven't met him but I know that the DSN and the prof would not work with anyone unsatisfactory and I have heard such good things about him from my friends whose children do see him.

Now as to the quizzing and why you want a pump, I can 100% guarantee you, that you will NOT be quizzed or interogated. I would imagine your current hospital is trying to put you off moving as it is a money thing ! Do not be put off. It is very laid back up in the new hospital and they think that all children should have a pump if they want one and if appropriate.

We all know that some people would not be good candidates for pumps but they are far and few between and some people do not want a pump which is their perogative.

I don't know how else to 'big' up the hospital. Ask me questions if you like, I will try and answer them all.

You could look at the Medtronic website and they do a pump school online which will take you through the workings of a pump, that might help. Or you could look at the INPUT website or www.childrenwithdiabetesuk.org website which will have some help on there as well about pumps etc.

Good luck

 

[Mandy]

Hi everyone. That's really positive and much more the response I was expecting from her current hospital. She is really keen to have a pump and has been for a while and done some research so taking on board what you've all said about pumping and the UCH I'm sure that she will get on fine. Glad that there have been people with experience and understanding to turn to. This has put both our minds to rest and glad that we have made the decision to move. By the way she was 13 at the weekend so will be in with the adolescents. Thanks again.