# Disability Living Allowance....



## sasha1 (May 12, 2009)

Hi all,

 As we parents are aware, our children are entitled to D.L.A, for their diabetes.
 Well Nathan's renewal form come through, well more like an exam paper.. I filled in said form, which took me quite a few days in order for me to fill in all relevant
information and even enclosed a weeks diary of how diabetes affects him, meal times, blood testing, insulin regime etc. A job well done I thought to myself.. How wrong I was.
 March I got the outcome, Nathan's entitlement was to be dropped. I then telephoned up to ask about th decision.. To my dismay..they have disallowed him any care for during the night..stating that at 14 he should be and take responsibility for his diabetes and not rely on others for help.. Hello what planet Im I living on. Nathan has of late suffered some horrendous night time hypo's.. partly to insulin, food and age.. these hypo's have left him on the floor..how on earth can he help his self.
 I then asked for a reconsideration..to my dismay..they still stand by what the decided. Now I am in the process of appealing at an independent tribunal.. to which I will go in fighting for Nathan. I am grateful for any benefit entitlement he is allowed but this must correspond to what he has to deal with..in lay mans terms a chronic life threatening condition.
 Personally, I feel all diabetics should be entitled to D.L.A. regardless of age or type. Why do we have to fight this system, the guides and rules the government, parliament have set out...FUNNY HOW THEY CHANGE AND BEND THE RULES TO THEIR ADVANTAGE... Should we all claim for lemons, T.V's and swimming pools???.. This system is wrong and I intend to challenge it.
 On that note.. I was wondering if any other parents are having the same problem or have been in the tribunal situation?
 Sorry for this long post, it's just i'm really angry, and fed up.
 Thank you
 Love Heidi and Nathan aka 'Kevin the Teenager'


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## Tezzz (May 12, 2009)

Have you tried your local paper - they may shame the befefits people into giving you the benefit your son deserves?

Good luck.


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## sasha1 (May 12, 2009)

Thank you Brightontez
I will certainly think about that, possibly my next point of call.
Hope Brighton still sunny
Heidi


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## bev (May 12, 2009)

Hi,
I have put your question on the childrens forum that i am on. There are lots of parents who have appealed against and won middle rate DLA. If they know how to get through the sytem they will let me know - i will copy their answers on here for you. I am pretty sure that they cant reduce the rate just because he has reached 14 as the dangers are still the same and you are his carer. I will let you know as soon as i have any replies. Bev


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## Tezzz (May 12, 2009)

More thoughts - get a letter from your doctor backing up your son's hypos and if the press turn up don't let him smile for the photo.

You might wish to add that you are losing sleep having to get up to check on you son as he has poor control.

You could ask for a *detailed explanation* for the refusal getting them to quote the relevant documents they rely on for their reasons. They could have made a mistake which could be pointed out to them.

It was sunny and cold today here in Brighton.

Good luck and keep fighting!


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## bev (May 12, 2009)

I just got this reply - hope it helps? Bev


Hi Beverly, 

I asked for my case to be looked at again and they refused to change the decision.  I took it to the independent tribunal and they changed the decision.  I think that is as far as you can go.  http://www.benefitsnow.co.uk/dmakers this is the web site I used to help me fill out the form, this is how they make the decisions.  Most of the people reading the dla forms have no idea what so ever about diabetes or the right sugar level they only look at why you need to look after your child and for how long.  Going to the GP and explaining what you have to do during the night will mean that they will support your claim for the higher rate.

I hadnt been to my GP regarding Matties bed wetting, just to clinic.  However before I filled out the forms for DLA I went to the GP and discussed all of Mattys care so that he would fill out the forms correctly.

Julie


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## diagonall (May 12, 2009)

brightontez said:


> More thoughts - get a letter from your doctor backing up your son's hypos and if the press turn up don't let him smile for the photo.
> 
> You might wish to add that you are losing sleep having to get up to check on you son as he has poor control.
> 
> ...



involving the press is not a good idea. 
Just how embarresed Nathan would feel. The teasing from his mates would be awful too.
Do DUK not do a pack as how to fill in the form? Or is there an article on their website?

Yes you need to ask for a statement of reason and ask for all paper work regarding Nathan's case.


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## Eggle (May 12, 2009)

Hi
For many years I have struggled with the DLA claims, I would strongly recommend going to your local Citizens Advice Bureau, they will help you appeal the decision.

I have been disabled for since 1994 due to a car crash and the form filling is becoming a joke. The CAB office told me that many people give up trying to claim due to the stresses caused by the long procedure and the fact that many people are refused help yet are infact elligable for dla.

But without CAB (or similar organizations) help your appeal would problebly be refused.


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## sasha1 (May 12, 2009)

Thank you for all your help and advice so far in dealing with my question/outburst. 
We got a large letter from the diabetes specialist nurse to enclose with the original renewal/claim form.
As we are all aware the decision makers have no idea what diabetes is like or how to live with it.. As I say its a club no one would put their name down for.. 
But one thing for sure I will be attending that hearing with as much if not more knowledge/information, documents, written statements, and even my pal that has had Type 1 for 36years since she was 8mth old. Hopefully to overturn Nathans decision but to raise awareness and set a presidence for how future claims are dealt with.

Heidi


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## bev (May 12, 2009)

Well good luck Heidi, please let us know how you get on? Alex is just 11 - but i am sure we will have this in the future - although he only gets middle rate anyway! Bev


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## Becca (May 12, 2009)

Hi 

Have a look here, it might be able to help you more?

http://www.childrenwithdiabetesuk.org/index.php?page=benefits-and-allowances

Becca


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## sasha1 (May 12, 2009)

Thanks Bev,
 I will sure keep you all posted on how this develops.
 How your little one getting on?. If I can be of any help in any way give me a shout. This is a brill site/valuable site my only regret is I didnt join up ages ago.
 Heidi


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## Tezzz (May 12, 2009)

Just one last thing - get copies of all the forms you fill in and any supporting documents so that if they lose them you can easily send another claim/appeal in and to remind you what you told them if you get any more questions asked. If you make a mistake and give them a different answer they can assume you could be lying.

When you have to do the paperwork next year you have something to go on.


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## bev (May 12, 2009)

sasha1 said:


> Thanks Bev,
> I will sure keep you all posted on how this develops.
> How your little one getting on?. If I can be of any help in any way give me a shout. This is a brill site/valuable site my only regret is I didnt join up ages ago.
> Heidi



Hi Heidi, he is ok thankyou - just having lots of hypo's - but so are a lot apparently due to the weather! We are hoping he may be offered a pump - but i know they are hard to get so we will have to see! Thanks. Yes i agree this site is amazing and has helped me so much - i dont know what i would have done without it - everyone feels like family! Bev


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## sofaraway (May 13, 2009)

I hope that you are sucessful in your appeal. Let us know how you get on.


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## sasha1 (May 13, 2009)

bev said:


> Hi Heidi, he is ok thankyou - just having lots of hypo's - but so are a lot apparently due to the weather! We are hoping he may be offered a pump - but i know they are hard to get so we will have to see! Thanks. Yes i agree this site is amazing and has helped me so much - i dont know what i would have done without it - everyone feels like family! Bev


Hi Bev
 Glad little one ok, the weather could have something to do with his hypo's, it may also be his age etc. Diabetes is hard enough for them and us as parents with out the hypo's.
 I've got my fingers crossed for you that you can get the pump. A few of the kids in our area have them and seem to do really well with them, Ive also spoke to a couple of adults with them and they havent looked back.
 If you dont mind me asking how long has your son been diabetic, Nathan started feb 07 2mths before he was 12.
 Heidi


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## bev (May 13, 2009)

Hi Heidi,
Alex was diagnosed nearly 6 months ago now. He was 10 and had been very ill - all the signs were there but i didnt know what to 'look' for! Does Nathan want to go on a pump?Bev


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## sasha1 (May 13, 2009)

Hi Bev,
 Bless, it was exactly the same for me with Nathan, like Alex he was very ill and all the signs were there, unfortunately the doctor didnt pick up on it either as I mentioned in my posting when I first joined.
 Nathan isnt really sure about pump at the moment, to Nath its all just a hassle either way and cant be bothered with any of it. Still doesnt accept it, doesnt want it etc. Was it your thread a read yesday regarding Alex and exams and how you felt??
 Heidi


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## sasha1 (May 18, 2009)

Hi all.

Thank you again for all your advice regarding the DLA, and for the web sites, they were brilliant and gave me more knowledge on how the system works. If your a parent and claiming its well worth having a look for general pointers etc.
Well i've spent the last few days writing a formal letter of appeal..5 more pages.
I also have a solicitors appointment on wednesday, for her to look through my letter and advise me on legal issues that go hand in hand with a tribunal hearing. 
Fingers crossed all will go well and i will keep you posted, for now i say...'Bring it on'...haha 

Heidi and Nathan


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## runner (May 18, 2009)

sasha1 said:


> Hi all.
> 
> Thank you again for all your advice regarding the DLA, and for the web sites, they were brilliant and gave me more knowledge on how the system works. If your a parent and claiming its well worth having a look for general pointers etc.
> Well i've spent the last few days writing a formal letter of appeal..5 more pages.
> ...



Good luck with the tribunal - hope the hard work payes off


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## allanfaye (Jul 6, 2009)

*Dla*

Hi, I'm a single parent with a young daughter who is diabetic. I'm also have just had my DLA dropped and will be appealing. One other avenue for potential help is to contact your local MP. Some are better than others, though.


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## sasha1 (Jul 6, 2009)

allanfnorman said:


> Hi, I'm a single parent with a young daughter who is diabetic. I'm also have just had my DLA dropped and will be appealing. One other avenue for potential help is to contact your local MP. Some are better than others, though.



Hi allanfnorman,

I feel for you hun....this system is a nightmare..  
At the moment I am waiting to see if the decision can be over turned in house by another department..although an official appeal has be lodged..On friday I received a letter from the DLA....containing 124 pages of information regarding my claim for Nathan...Most of this was all the information that I had submitted...and a reason for there decision...from what I can see by 2 paragraphs by some doctor who's writing is illegiable...although his final sentence is ...I would suggest reassesment when he is 16 years old he should be able to cope with more responsibility by then..... the paragraph the DLA have used is as follows....It is accepted that nathan can need some attention/supervision at night, but he is aware of his condition and if his blood is tested before going to bed it will give an indication of his current health/risk........mmmmmmmm...as if....they have not a clue, but what follows is a classic line.......sugary snacks can be left at the bedside for use as necessary.....thats if nathan can actually open them or anything else in hypo state.....it is not considered that he needs repeated attention or someone to be awake to watch over him most nights of the week in order to prevent the risk of serious harm/danger........and in any case all children need some supervision at night....

Like you I'm going to fight and continue with this appeal...I will stand at that hearing representing Nathan...and will have my day with these people...and say what I have got to.......you are all so wrong on every level of this judgement...Fair enough I may not win or get the decision over turned..but I must try and give it my best shot....

Good Luck...will keep you all posted on this

Heidi


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## AmandaB (Jul 6, 2009)

I know I'm going to incur lots of people's wrath with this but, in playing devil's advocate, in what way does this DLA actually help a diebetic? Isn't it just some extra cash? It doesn't help overcome night hypos or improve BGs nor is it enough to allow a parent to give up work and care full time.
In this day and age when Diabetics are trying to persue normal lives and not feel disabled doesn't DLA move us another step towards being regarded as disabled rather than living with a condition? Don't we try and live as normal a life as possible? Diabetic children go to normal schools, we expect the school staff to understand their needs, for no extra money but at home we expect to get extra benefits?
OK, got my hard hat on!


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## sasha1 (Jul 6, 2009)

AmandaB said:


> I know I'm going to incur lots of people's wrath with this but, in playing devil's advocate, in what way does this DLA actually help a diebetic? Isn't it just some extra cash? It doesn't help overcome night hypos or improve BGs nor is it enough to allow a parent to give up work and care full time.
> In this day and age when Diabetics are trying to persue normal lives and not feel disabled doesn't DLA move us another step towards being regarded as disabled rather than living with a condition? Don't we try and live as normal a life as possible? Diabetic children go to normal schools, we expect the school staff to understand their needs, for no extra money but at home we expect to get extra benefits?
> OK, got my hard hat on!




Hi Amanda....

I accept your opinion....although I do not agree with it
Some of the points you raise are valid and I accept that....no amount of money is going to stop night time hypos etc or take diabetes away from children/adults....I would give every last penny I have to ensure this.
Yes it is extra money......to which they are entitled...there are more people out there claiming money for which they are not entitled......diabetic children are....in fact while we on that subject how many people get handouts from our country..when they shouldnt even be here in the first place...no one says anything about that... not politically correct... 
Can I ask how old you are...and how old you were when you were diagnosed?
As for my circumstances..yes I'm a single parent...yes I dont work for other reasons..which I dont feel the need I have to go into...some parents have no option to give up work when a child is diagnosed...because school cannot cater for the requirements of diabetic children....will not take responsibility for there care etc.....do you expect a 4 year old to be able to manage her diabetes on her/his own....my own experience of Nathan's school in one word SHAM....in the understanding of diabetes....If I was not on call through out the school day to help Nathan.
In my earlier post I said all diabetics should be awarded DLA regardless of age and type...if not to help with the rising food costs....etc
Yes I want Nathan to persue a 'Normal Life'......but on the other hand he has this terrible potentially life threatening condition.......has to take 4 injections a day...check blood etc etc.......before food can pass his mouth...than I'm sorry but in the big scheme of things he is at a disadvantage....

Heidi


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## bev (Jul 6, 2009)

AmandaB said:


> I know I'm going to incur lots of people's wrath with this but, in playing devil's advocate, in what way does this DLA actually help a diebetic? Isn't it just some extra cash? It doesn't help overcome night hypos or improve BGs nor is it enough to allow a parent to give up work and care full time.
> In this day and age when Diabetics are trying to persue normal lives and not feel disabled doesn't DLA move us another step towards being regarded as disabled rather than living with a condition? Don't we try and live as normal a life as possible? Diabetic children go to normal schools, we expect the school staff to understand their needs, for no extra money but at home we expect to get extra benefits?
> OK, got my hard hat on!



Hi Amanda,
The reason parents/carers are entitled to claim disability living allowance is because they are carers.
Because we have to make checks at random times throughout the night on occasion - this makes it near impossible to be employable - due to the fact that we are on call 24 hours a day. What employer wants to employ someone who may need to leave at a moments notice? Who wants to employ someone who is obviously tired through night time checking and incapable of doing a good days work?
The carers allowance we are entitled to is supposed to be the equivalent of how much it would cost to employ a nurse to do the night time checks etc.
This comes to the hefty amount of 53 pence per hour approx. I am certain that if this job were advertised there would be no takers!
All this is made even harder on carers due to the fact that we arent paying into a pension so therefore are facing a financial loss in the future until such time as our children are old enough to care for themselves.
Your absolutely right - the money does not take away hypos etc or make their lives any easier to deal with as regards diabetes and its complications, but it does go some way to helping with extra costs that we occur as a direct result of having a diabetic child. Food being a big part of this, since diagnosis our food bill has gone up by about one quarter - simply due to the fact that we try to buy the healthier cuts of meat and fish and now we HAVE to buy hypo treatments (rarely bought sweets or biscuits before this) whether we want to or not.
There are also other costs that we have as a direct result of having a diabetic child, like if my son is feeling ill whilst we are out and just wants to get home - a taxi doesnt come cheap (if we dont have the car that day) or free. We have bought various extra sporting items to encourage doing extra exercise as we all know that exercise helps long term and helps reduce high levels etc.
Also, there are occasions when my son isnt able to join in the fun because his levels are either far too low or far too high - so we take the view that a trip to the cinema will help him to feel like he is having fun aswell - the cinema isnt cheap either. A child without diabetes can join in anything at any time - but a diabetic child often has to watch from the sidelines.
I have to do extra washing when his levels are too high through the night due to growth hormones - he wets the bed sometimes because of high levels, and this incurs extra sets of bedding etc and washing powder. This wouldnt happen if he wasnt diabetic.
Diabetes within a family setting doesnt just affect the child - it affects the whole family and incurs many extra costs that we wouldnt have had if our children were not diabetic.
There are more examples i could give you - but i think i have covered enough here.

What i would add to the above is that if someone offered to swop my 53 pence an hour for a little boy who didnt have diabetes - then i would gladly make the swop!
Both myself and my sons father have worked full time for a total of appox 50 years between us , so i think we have paid enough into the benefits system to warrant our 53 pence per hour.

If your views on claiming disability living allowance is the same across the board, it would seem that there is no reason to allow a blind person any benefit because it will not improve their eyesight. Or a paraplegic - because it will not make them walk. Or anybody else with a chronic medical condition - because money wont make them better. And thats the point! It isnt there to make them better - its there to ease their daily lives - because their lives are infinateley more difficult with their disabilities than that of their peers.
Just because people cant 'see' diabetes - doesnt mean its not a disability.

Bev

p.s. Perhaps teachers should claim more money for helping a child from going into a coma - but that is up to them to deal with - us parents and carers have enough stress dealing with diabetes.


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## sasha1 (Jul 6, 2009)

Please click one of the Quick Reply icons in the posts above to activate Quick Reply.


Hi Bev....

Thank you for your post on this....You said exactly what I should have also said....but at the time could'nt think of it all

Parents who work can also claim carers allowance as well as DLA....contact DSS or DLA for a claim form if needed

Heidi


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## sasha1 (Jul 6, 2009)

Hi Amanda...

Can I also ask how you would feel if it were your child that were type 1 diabetic..instead of yourself

Heidi


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## Adrienne (Jul 6, 2009)

Well I agree with all of that !!!  Well said people.    

On a personal note I don't expect the school to care for my daughter for free.   Infact the PCT pay for a one to one carer for her at school.    The school have just applied for a statement.    The difference these days from a few years ago for children is the newer regimes ie BB or pumping requires even more intervention than a few years ago.    With BB and pumping you can achieve much better numbers and with this tighter window and better numbers comes the potential for more hypos but also carb counting and extra testing and to know what to do with those numbers.     

A few years ago it was two injections a day of mixes and a few finger tests, before that there were not even finger tests and a lot of it was done on whether you feel hypo, my daughter never feels a hypo or a hypo and does not look different when either as well so needs lots of tests.

The regimes years ago have the potential to knock of 23 years on average of life.    To stop this awful life expectancy and to have better care on a day to day basis you have to work extra hard at it and parents these days pretty much give up their lives so their children can live as normal a life as possible.

I can't work.   I'm a single parent, not through choice originally.  Luckily I have worked for my dad for 21 years and they send me work over the net and I can do it in the evenings or when I haven't been called into school.   I don't choose not to work, I would choose to work, I enjoyed my job, infact I loved it but I have no choice these days.   I could not survive without DLA.

Don't worry Amanda, I don't think anyone will have a go at you.  You have made valid points and we have heard them before from other people, wherever I go actually.


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## Adrienne (Jul 6, 2009)

I can't claim carers allowance because I 'earn' too much.   If I was on income support I could but because I earn and get DLA and get tax credits because I refuse to stop working they say I am too rich !!!!  Love it.   Would like them to live my life for a week.


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## runner (Jul 6, 2009)

As a civilised society (well we live in hope!) and as social beings, I feel we all have a collective responsibility towards children and those who cannot, through no fault of their own, support themselves, and that's why we have DLA and other benefits.  I would rather my taxes went on these than some of the other places they go.  Children are the future and will be looking after us directly or indirectly as we get older. I'm sure Nathan and Alex will be doing their bit later on!


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## sasha1 (Jul 6, 2009)

runner said:


> As a civilised society (well we live in hope!) and as social beings, I feel we all have a collective responsibility towards children and those who cannot, through no fault of their own, support themselves, and that's why we have DLA and other benefits.  I would rather my taxes went on these than some of the other places they go.  Children are the future and will be looking after us directly or indirectly as we get older. I'm sure Nathan and Alex will be doing their bit later on!




Hi Runner,

Thank you for your reply....your words like the others mean a great deal to me...I can also assure you that Nathan will be doing his bit later on in his career life and beyond...he will put back what he is rightfully entitled to and more

Hope you are well

Heidi


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## Adrienne (Jul 6, 2009)

Runner, that is lovely what you said and I agree wholeheartedly.

However if you would like to stop paying tax and pay me directly then that would be most appreciated.    All donations greatly received.

Actually do you know what hasn't been mentioned by anyone, I don't think.   I have always worked full time until I was 31 from 16.   I have paid tax and NI for all those years.  I never claimed anything at all and working in a criminal solicitors I saw plenty of benefit fraud with these people who think they were 'owed' by us workers.

When Jessica was born and we were living in a charity house next door to Great Ormond Street, my maternity pay came to an end.   I was single and her father was paying me nothing at this point, last thing on our minds quite frankly.   I still had a mortgage to pay and bills to pay for my house but had no income.   I was sent to the hospital social worker and she told me I was too rich to help !!! and too poor to survive.  Terrific.   My dad paid my mortgage for months until I was able to get back on my feet and work.   My work had changed obviously and I had to work from home whenever I had a chance as well as looking after a very sick baby.    

You cannot claim DLA until a child is 3 months old I think or is it 6 months.   Anyway I claimed as I was told to.   It was refused so I appealed and 18 months later I went to tribunal with my dad for courage, my sick baby because no-one else was trained to look after her and back then things were very very dodgy and my mum to watch my daughter whilst I was in the tribunal.     They panel were absolutely horrified that I was there and had the form filled in already.    The doctor on the panel could not believe what I was doing and how I was dealing with it yet working as well.    They back dated it fully for 18 months and I managed to get a hall and stairs carpet so my daughter didn't have to crawl on concrete floor anymore. 

They have no idea, these DLA people, what its like.   There is still no provision for people who were in my position.   I was lucky, my dad paid my mortgage but others would have lost their homes !!


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## sasha1 (Jul 6, 2009)

Hi Adrienne,

I know exactly where you are coming from on this..

I too worked up until I had Nathan...than because of me having a nervous breakdown..as a result of PND and the subsequent breakdown of my marriage 9 years ago..have since been on my own...living basically hand to mouth...Nathan's dad is about as much use and support to him as a chocolate fireguard..has not the slightest idea of how to cope or understand Nathans diabetes...in fact the last time his dad saw Nathan was the 12 april for 2 hrs...

Benefit fraud is rife and in someways open to abuse, therefore penalising the genuine among us...DLA can be claimed once the child has had diabetes for 3 months....to see if there has been any change...Hello but as far as I am aware you dont get over it...its not a cold

I live in a privately rented house...that is mine and Nathan's home...When I need a council house....I was'nt entitled to one...hello I was effectively homeless at the time...I have lived here know for 9 years...its cosy...we don't have brand new furniture and mod cons, go on holidays, run a car etc...but what we have to me is priceless...and more than some..Nathan is loved, cared for, clean, has clothes on his back and well fed..

DLA people have no understanding of diabetes, care, management etc...I personally intend to try to change there view on this...not just from my side...but for other parents who find thereselves in our position.  At the end of the day no parent should have to fight the system for the rights of our children in getting what they are entitled to legitamately..but fight is what I fully intend to do

Heidi


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## insulinaddict09 (Jul 6, 2009)

sasha1 said:


> Hi Amanda...
> 
> Can I also ask how you would feel if it were your child that were type 1 diabetic..instead of yourself
> 
> Heidi



Without entering in to another major debate can i just second heidi in this , also well said bev!!!!!  I totally agree with everything you have both said


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## bev (Jul 6, 2009)

Amanda, I have noticed on your profile that you are in the teaching profession. I would be interested to know whether you would be prepared to treat a type 1 diabetic child if he/she needed it? Is money really an issue if your first duty is to provide a 'duty of care'?
I only ask as i personally find it confusing that someone who is herself a type 1 and is therefore in the perfect position to understand the requirements of a diabetic child - would question the salary that is being paid.

As you will know, there is no protocol within schools regarding the treatment/care of children with diabetes. This is something that is being looked into - and hopefully things will improve for our children, so that they can be educated in a safe environment - in the knowledge that they will get emergency help as and when required - and not whether the teacher is being paid enough money. Is it down to lack of training? Some schools seem very interested in receiving training - but others are just a closed book and have no interest in even trying. This cannot be right for our children.

What upsets me the most about a lack of protocol within schools is that if you saw a stranger on the street mid-hypo you would probably help out without even a second thought, and yet there are children sitting in schools who are denied even the most basic of care and help - even though the dangers are quite apparent and can lead to coma or worse.

It really is a puzzle to me. Bev


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## ceara (Jul 6, 2009)

As some will be aware I was a fairly active member before, as I perceived it, anti Irish 'jokes' appeared on this site.  Up to this point I was content to watch the forum and read the various advices but not contribute.  I now break my silence once for this thread.

I am a tribunal member and have long experiences of the appeal process.  In my experience, tribunals really do bring the worst out in people.  I once had a parent send one of my teachers back a Christmas school report with the footnote that it "would compromise my DLA - make it sound worse".  Honest.

I did attempt to get folk in this forum help rewrite SEN legislation here in Northern Ireland a number of months ago and no one assisted me.  So the opportunity passed never to be repeated.  I did try but mine was one voice e.g.  Mencap made 786 submissions diabetic related submissions were counted in single figs.

Bev, there are some very excellent examples of diabetic related protocols in schools - I have seen them.  I think you are referring to the lack of national protocols (regulations). 

Its a sad fact that folk look after their own interests but fail to come together to help each other.  Rather that going to tribunal to have a fight - join together and change the rules the DLAs work under.  No one in a DLA  is keeping cash from parents as part of an evil plan - they are applying the DLA rules as they currently are.  If you think they are 'wrong' then have the rules changed.  But folk must join together.

I am with Amanda and I welcome her input.  Folk need to stop playing the emotive card.  FACTS are needed - and they are non emotive and are stone cold.

To say that DLA staff have no idea about diabetes means that a lot of work needs to be done - but I see no major attempt to educate.

Ceara


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## bev (Jul 6, 2009)

ceara said:


> As some will be aware I was a fairly active member before, as I perceived it, anti Irish 'jokes' appeared on this site.  Up to this point I was content to watch the forum and read the various advices but not contribute.  I now break my silence once for this thread.
> 
> I am a tribunal member and have long experiences of the appeal process.  In my experience, tribunals really do bring the worst out in people.  I once had a parent send one of my teachers back a Christmas school report with the footnote that it "would compromise my DLA - make it sound worse".  Honest.
> 
> ...



Hi Ceara,

I do remember you asking for stories/help for your campaign - but as i recall you were asking for stories from families in Ireland? I may have missunderstood you at the time - but i would happily have put my name to anything if it meant getting some better care for our children in schools. Sorry if i missunderstood!

I dont think anyone is using the emotive card regarding the DLA - Amanda was asking why diabetics should claim for DLA (or rather their parents) and i have explained my views on the need for DLA so wont bore you with another version!

The 'problem' that a lot of parents face is that there just arent any legal requirements for schools to offer any help to diabetic children at the moment.
It is all done using school care plans and only if the school can be bothered. This just isnt right and we are hoping that this will change.( i do accept that some schools are brilliant at looking after diabetic children).
This was not a personal attack on Amanda at all - i was just interested to hear it from the point of view of a teacher and a diabetic - so seeing it from both sides as it were!

Nice to hear from you anyway, hope your feeling well and still campaigning!Bev


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## Adrienne (Jul 6, 2009)

Hi Ceara

Well that's a stirling job you do and I imagine you do take some stick as you say.  I also welcome Amanda's input.   She put her hard hat on, as she said, but she also said she was playing devil's advocate which is fair enough as well.

"Its a sad fact that folk look after their own interests but fail to come together to help each other. Rather that going to tribunal to have a fight - join together and change the rules the DLAs work under. No one in a DLA is keeping cash from parents as part of an evil plan - they are applying the DLA rules as they currently are. If you think they are 'wrong' then have the rules changed. But folk must join together."

I think you are unaware of what is going on around the country in general where diabetes is concerned.    It was a small (about 5) group of mums (myself included) who joined together to get the wording of the change4life campaign altered.   I asked on this forum and was inundated with help and from the people with type 2 as well as 1.

I am part of the UK Children with Diabetes Advocacy Group.   There is a group of us with a lot of members as well who campaign tirelessly and work WITH DUK and JDRF and INPUT to change things and make life better.   We have found the DUK are quite selfish and take the credit for stuff that they don't do.    We have fought back on that and they now seem to be behaving themselves.    We need to get the leaflets updated.    Schools are approached by DUK or approach them as the biggest diabetes charity.   The leaflets are very wishy washy and believe me we have tried to get them changed.   The latest folder that DUK have produced for schools but only if the schools reply to one email to say they want one, is inadequate.    They did not ask the right people for advice.    I have numerous friends travelling where they can and when they can, their children with diabetes come first though, all over the UK.   They are asked to give speeches by DUK and others and some meet with people from all the companies, I've been to one myself recently and we are trying to get things changed.     It is extremely hard.

However as well as pulling together to get things changed you also have to make sure your family is ok as well especially your child with diabetes who relies on you 100% to make them safe and have a good fun childhood with a disease that could kill them !!!!!!

I have a meeting with the local PCT soon, with the Head of Paediatrics to try and change the way children with diabetes are dealt with and cared for in East Sussex.    I have cancelled Wednesdays meeting as INPUT have said they would like to come with me, we have pulled together and we are rearranging the meeting.   

Now you may think that we all think of ourselves but let me tell you, before you spout off like you did (sorry but I'm getting a teensy bit cross now) that I don't need to get the care changed where I live.   My daughter goes to a fab hospital in London, I don't care what the state of the care is locally or rather I don't have to care, but I do.   I know what good care should be like so I will strive to get it locally for the other people.    I also don't need to bother with the Chessington thing.   My daughter has a blue badge and does not have normal diabetes, she has another condition which has made her diabetes so she qualifies automatically for an exit pass.   But that hasn't stopped me from helping others and I'll carry on helping others.

Please don't judge just what you read.   Find out more about these people first.

I've met Bev and I have spoken to her lots of times now.   Her son is not even a year into diagnosis.   She has learnt so much and she has learnt horrible things about diabetes that no mother should ever have to learn.   She is an amazing lady so don't judge her on a posting.    If it comes to a 'fight' against Chessington or like the Change4life then Bev will be there without a shadow of a doubt.    

Please ask before accusing, that's just not fair.


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## sasha1 (Jul 7, 2009)

ceara said:


> As some will be aware I was a fairly active member before, as I perceived it, anti Irish 'jokes' appeared on this site.  Up to this point I was content to watch the forum and read the various advices but not contribute.  I now break my silence once for this thread.
> 
> I am a tribunal member and have long experiences of the appeal process.  In my experience, tribunals really do bring the worst out in people.  I once had a parent send one of my teachers back a Christmas school report with the footnote that it "would compromise my DLA - make it sound worse".  Honest.
> 
> ...




Hi Ceara....

Firstly can I say I have never been involved in any anti irish jokes....or any others that may be aimed at people that have different cultures, religion, belief, colour etc..

I am actually having to take my time replying to your post...as I am feeling rather angry...that you seem to have judged people quickly...firstly what gives you the right to do so...

I am a parent of one child...who is type 1...aged 14 diagnosed feb 07...he had 11 nearly 12 years...of living sorry to say this a 'Normal life' that did'nt involve taking injections, blood test, watching what he ate and when he ate it, having hypo's/hyper's....feeling outcast and isolated by this so called human society....

Just a second....how dare one say to a mother/father that they are using an emotive card...just how narrow minded are you....while I accept some may use this...you cannot make an assumption and tar everyone with the same brush....I deal in facts...and the hard ones at that....how can you say appeals bring the worst out in people...do you know me, bev, adrienne...I would not wish diabetes on anyone...and would give every last penny I have to rid Nathan of this chronic potentially life threatening condition....

I would help anyone at anytime of the day regardless of what they needed...I have given my phone number out to a few people on this forum...and told them what ever time of day to phone if they need me or I can help in anyway...I certainly do not look after my own interests...yet another judgement..

As I stated in an earlier post if me appealing helps at least one other parent in this situation and changes how the DLA view diabetes...then I have acheived something..I am trying to educate..and doing all I can...

Dont even get me started on schools in my area...or in fact the one Nathan attends......the list of failings goes on and on....but again I am trying to educate them for Nathan and the others who are/will be going to his school with diabetes....I fact I single handidly addressed school on letting the children have a 4 weekly private visist/group session with there DSN...it took time but school finally agreed and this has been a regular event for nearly the past year....

Heidi


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## Adrienne (Jul 7, 2009)

*Emotive*

The emotive thing has had me thinking long and hard.

I sit at my computer day and night in between working and acting as carer at school helping other people with diabetes, either on here or the even more active email group of over 300 parents of children with diabetes.

When I am helping those people I am not really emotional about my own child, I'm helping others with their emotions and also assisting with regimes, carb counting etc etc.

I do however concur that I get very emotional every so often about my daughter and her condition.    I ignored the part of Ceara's post about emotive to begin with and addressed the rest but have now decided not to.   I nearly lost my daughter 1 February 2008.   I actually nearly lost her for the first 5 weeks of her life on a daily basis.   I had to watch a blood clot hanging on to the end of a hickman line (inside her) go in and out of her heart cavity on a daily basis through an echo and knowing if it dropped off that would be it, bye bye.   Feb 2008 at 11 pm it was by pure chance that I went into her bedroom as I took the ironing upstairs to put away that I saved my daughter's life.   I had checked her at 10 pm and she was high ish about 10.0 odd so wasn't going to check again until midnight.

I found her foaming white at the mouth, not making a sound, with her arms and legs in very weird positions.   I tested her and she was 1.7.  I tried coke but she wasn't having it.   I got the glucagon, one of which I now keep upstairs and I injected it in her leg.   I ripped her pj's off to give it.  I have never been trained to give it but instinct kicked in.   By this time she was howling like I have never heard from a human being before.   It was the sound of a wounded animal.   I could do no more than just wait.   The glucagon kicked in after about 5 minutes and within hours she was in then 24.0.  You then have to be careful about correcting as hypos breed hypos and you cannot give glucagon again until the liver replenishes which is minimum of 24 hours but totally 48 hours.    She was a bridesmaid the next day.    I had a 4 hour drive to get her there and I had been awake all night.  She floated down that aisle with a reading of 27.0.   Believe me I was giving insulin but she just wasn't coming down, she was up and down all over the place.    I should have rung an ambulance but I knew she would have been devastated not to have been a bridesmaid.

So yes I'm emotional and I have every right to be emotional.  It is a totally different thing if you are a parent of a child with diabetes than if you have diabetes yourself.   The feelings have to be so very different.  

I don't use emotions to get money though.   I do however believe that my daughter should live as normal life as possible like her friends and that can and does take money that I do not have as I cannot work full time and if I didn't work for my dad then I would not even be able to work part time.

FYI I have never made any anti Irish jokes on this forum, I have actually no clue as to where most people come from.


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## kate pooley (Jul 7, 2009)

sasha1 said:


> Hi all,
> 
> As we parents are aware, our children are entitled to D.L.A, for their diabetes.
> Well Nathan's renewal form come through, well more like an exam paper.. I filled in said form, which took me quite a few days in order for me to fill in all relevant
> ...


HI, Im Kate, i went to tribunal yesterday, it was the second time i have had to do this and it was awful? On the panel was the chairman, GP and a ladie from the Disability Living Allowance Department. They ask all kinds of questions, try to confuse you and ask you your symtoms of all your conditions just in case your lying! I took a my local TUC adviser with me who knows the system with me, who can talk on my behalf and with me. It still went pear shaped!  Because the panel said they were confused they want to send a doctor out to my house to examime me! they also want my blood sugar diary from 08 to 09 and more information from my consultant, although the paper work states everything. I have type 1 , gastropereis, neuropathy and eye problems amongst others.


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## Adrienne (Jul 7, 2009)

Hi Kate
That's awful, I'm so sorry that happened.   What is the matter with these people.   Surely if you had proof and things with you that should have been enough.  What happens is that they want people to drop it and give up so they refuse it and that is what happens.   A social worker told me that.   When I applied she said you will get it refused but just appeal it.  She was right.

Good luck.


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## Steff (Jul 7, 2009)

hi there and a warm welcome kate so sorry you has to go through this is sounded awful   if you had the proof and things with you that should of been enough surely? grr these people are so frustrating 

good luck


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## Northerner (Jul 7, 2009)

I don't have anything to add to the details of this thread, but would just like to say how impressed I have been with how everyone has responded. It is clearly a subject that can evoke great passions - understandably - and I have been touched by all your stories, but all parties have expressed their views with dignity and respect. Thank you, I wish you all well and am thankful that I do not have to bear your responsibilities and worries - you are very impressive human beings.


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## sasha1 (Jul 7, 2009)

kate pooley said:


> HI, Im Kate, i went to tribunal yesterday, it was the second time i have had to do this and it was awful? On the panel was the chairman, GP and a ladie from the Disability Living Allowance Department. They ask all kinds of questions, try to confuse you and ask you your symtoms of all your conditions just in case your lying! I took a my local TUC adviser with me who knows the system with me, who can talk on my behalf and with me. It still went pear shaped!  Because the panel said they were confused they want to send a doctor out to my house to examime me! they also want my blood sugar diary from 08 to 09 and more information from my consultant, although the paper work states everything. I have type 1 , gastropereis, neuropathy and eye problems amongst others.




Hi Katie,

I truly feel for you...No-one should have to  be subjected to this, and I am appalled that you have had to go through this not once but twice.
I have been informed of what to expect from the tribunal panel and who will be present..I took advantage of a half hour solicitors advice..before I launched my appeal. I am well aware of the approach they will take..and understand it in some ways is there position to catch claimants out.
I understand how frustrating it must be for you..especially when they have all the written documentation in front of them..on a positive note however them asking for further information..would suggest to me that they need more clarification in order to rate your award accordingly..please don't view this as 'Pear shaped'...it may also mean that you have cast doubt over there decision.
I have my fingers crossed for you that the outcome will be successful in your favour..
If I can be of any help or support to you in anyway during this time or after please feel free to pm me anytime

Heidi


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## sasha1 (Jul 7, 2009)

Northerner said:


> I don't have anything to add to the details of this thread, but would just like to say how impressed I have been with how everyone has responded. It is clearly a subject that can evoke great passions - understandably - and I have been touched by all your stories, but all parties have expressed their views with dignity and respect. Thank you, I wish you all well and am thankful that I do not have to bear your responsibilities and worries - you are very impressive human beings.




Hi Northerner,

Many thanks for your reply..It certainly means a lot to myself and others. I am also thankful for they way you think the subject has been handled by all parties involved..as you say it is a subject that can evoke great passion...and not all parties will have the same view/opinion..during the posting I personally have had to think long and hard about my reply..and some elements of which have pushed me to the limit on the way in which I respond.

Heidi


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## runner (Jul 7, 2009)

Hi Katie,

It sounds like a dreadful ordeal and I hope it has a positive result.  I think you're very understanding Heidi in saying that you understand part of the panel's role is to catch people out. It shouldn't be, but I expect they respond to 'targets' and moving thresholds applied to the granting of DLA.  My nephew worked for the Citizen's Advice Bureau when the government announced it's intentions to reduce the rate of claiming, and helped people appeal when their claims, which had previously been granted, were subsequently turned down - their conditions, and 'the facts' had not changed.  Sadly thresholds do move to meet new funding and target requirements. 

The panels are dealing with real people and real families, of course there are going to be emotive issues, this doesn't mean the basic facts are not present too.  Families need to be dealt with in a sensitive manner when they are already undergoing crises and difficulties.

By the way, I thought many of you said you didn't work - I think from all the campaigning and support work you are involved in, you mean you don't do _paid_ work.    I think lots of people on this forum help others from running marathons to pro-active campaigning - thanks!


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## sasha1 (Jul 9, 2009)

Hi All

Just thought I would share with you all that this morning I got confirmation that Nathan's appeal is definately going to be heard at a tribunal hearing for a date to be set somewhere between 6 to 12 weeks time...I will be informed of the date 2 weeks prior to the actual hearing.

The confirmation form that I will be still persuing the appeal and that I will be attending the hearing has been posted back today as well.

Although the appeal form was originally sent for Nathan...due to a mistake by the DLA...not putting me down as the appointee.. I phoned the TBS to amend that information.

Heidi


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## Steff (Jul 9, 2009)

hi heidi wish you both all the luck in the world i know i dont need to ask this but please keep us posted , i can say this on behalf of all of us i think that your an amazing mum you and nathan make a great team we all want you to get the right outcome 

All the best for when it happens hun xxx


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## sasha1 (Jul 9, 2009)

steff09 said:


> hi heidi wish you both all the luck in the world i know i dont need to ask this but please keep us posted , i can say this on behalf of all of us i think that your an amazing mum you and nathan make a great team we all want you to get the right outcome
> 
> All the best for when it happens hun xxx




Hi Hun.....

I will deffo be keeping you all posted on this...as I have said before I may not win...but if I can make them think about one other case and there decision to stop another parent going through this..then my job has been achieved..Hopefully I will however win...but it is not certain.....

Thank you for those kind words steff and your best wishes

Heidi


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## sofaraway (Jul 10, 2009)

Best of luck Heidi, I had a friend who got her DLA taken away and on appeal she won. 

I didn't claim DLA when I was entitiled not sure if I would still be entitiled to it.


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## runner (Jul 10, 2009)

sofaraway said:


> Best of luck Heidi, I had a friend who got her DLA taken away and on appeal she won.
> 
> I didn't claim DLA when I was entitiled not sure if I would still be entitiled to it.



Hi Nikki - might be worth havng a chat with the Citizen's Advice Bureau.


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## AJL (Jul 10, 2009)

I am posting this comment not as a criticism but as information/an observation
having discussed this with my mum yesterday who had to care for me when I had diabetes from the age of 2 1/2 (6 months after my brother was born).  Mum worked full-time from when we were young, until I was in my early teens we could not get a clear indication of sugar levels i.e. the urine dipsticks just stated if there was no sugar, hypos could not be easily identified as we had no blood testing strips (they hadn't been invented), my dad worked night shifts and my mum also had my brother to look after who was 18 months younger than me.  Dad worked in a factory and mum had jobs that in today's terms would probably pay the national wage.  They didn't even own a phone in the early years of my life.  Yet they got on with looking after me without any extra help or payment and we got on with it.  We surived, we managed and and nearly 40 years later everything is still fine.  It also hellped me to be a self-sufficient adult who has had a range of jobs from being a cleaner through to being an academic.  Yes diabetes is there, yes it is scary (mum, dad and I have lived with the fear of what it might do to me for most of my life) and in the past as well it was extremely difficult to manage - boiling syringes before each injection with very thick needles, no blood testing, sudden hypos (day and night) but we got there and are so close for having done it.


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## Adrienne (Jul 10, 2009)

AJL said:


> I am posting this comment not as a criticism but as information/an observation
> having discussed this with my mum yesterday who had to care for me when I had diabetes from the age of 2 1/2 (6 months after my brother was born).  Mum worked full-time from when we were young, until I was in my early teens we could not get a clear indication of sugar levels i.e. the urine dipsticks just stated if there was no sugar, hypos could not be easily identified as we had no blood testing strips (they hadn't been invented), my dad worked night shifts and my mum also had my brother to look after who was 18 months younger than me.  Dad worked in a factory and mum had jobs that in today's terms would probably pay the national wage.  They didn't even own a phone in the early years of my life.  Yet they got on with looking after me without any extra help or payment and we got on with it.  We surived, we managed and and nearly 40 years later everything is still fine.  It also hellped me to be a self-sufficient adult who has had a range of jobs from being a cleaner through to being an academic.  Yes diabetes is there, yes it is scary (mum, dad and I have lived with the fear of what it might do to me for most of my life) and in the past as well it was extremely difficult to manage - boiling syringes before each injection with very thick needles, no blood testing, sudden hypos (day and night) but we got there and are so close for having done it.



Hi

Thats great, I understand how hard and worrying it must have been for your mum and dad back then.

I have no illusion though that the great care that can be achieved with todays fantastic inventions that my daughter won't grow into a self sufficient adult who had diabetes with bells on.   I don't think that have DLA or anything else will affect her at all.    Today is so very very different from 40 odd year ago, even 10 years ago infact.

You, I imagine were sent to school with your dinner money and whatever else you needed.   You didn't need anyone to do your finger tests and you didn't need anyone to give you an injection as back then it was probably only one or two injections a day.

These days schools have to cover themselves so have to have care plans generally signed by the doctors or nurses or at the very least agreed by parents and schools.   Someone is needed to inject a child at lunch time, you can't expect a 5 year old or sometimes even a 10 year old to inject (Gt Ormond Street Hosp do not make children under the age of 13 inject if they don't want to) themselves.   In many instances the schools will not inject so mum or dad have to go in and do that every lunchtime.

You cannot expect a child to finger test themselves, some do, but some don't but definitely you cannot let a child act on the number, they may need a boost to bring them by up but how much !!  One jelly baby may rise one child by 2.0 but another child it may take 5 jelly babies to do the same thing.  This is all normally worked out by the parent and written in care plans.   Why the hell should these children have to do all this extra stuff which is a huge responsibility when they haven't asked for diabetes, its not their fault.   I understand also it wasn't your fault but back then you didn't have the stuff we have these days.

Whilst the condition is the same, the treatments and medical equipment is so so so vastly different.   User intervention is huge and is practically a full time job.   Schools have to react to numbers on meters and food, they didn't have to do that when you were at school.   

So whilst I commend any parent ever in the world at any time since time began and I understand all the feelings it is a lot more care today than it has ever been before.    I have a feeling it will get even more complicated as new devices come on the open market and I have a feeling that what we do is nothing compared to what the parents in 40 years will have to do but we are today's parents and today's parents have to intervene on pretty much a 24 hour basis with their child's diabetes.

I would like to go to work, I miss my full time job.   I can't.   I get called into school, we are under three different hospitals !!!

So thanks for sharing your post, I found it very interesting, I honestly did because it amazes me how parents coped when there were no meters or pumps or BB.    I would not like to have been a parent then so my hat is off to your parents without a doubt.

I hope we understand each other ok, I understand where you are coming from, I wouldn't have liked to have lived with the uncertainty but I hope you appreciate that it is different now.


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## sasha1 (Jul 10, 2009)

AJL said:


> I am posting this comment not as a criticism but as information/an observation
> having discussed this with my mum yesterday who had to care for me when I had diabetes from the age of 2 1/2 (6 months after my brother was born).  Mum worked full-time from when we were young, until I was in my early teens we could not get a clear indication of sugar levels i.e. the urine dipsticks just stated if there was no sugar, hypos could not be easily identified as we had no blood testing strips (they hadn't been invented), my dad worked night shifts and my mum also had my brother to look after who was 18 months younger than me.  Dad worked in a factory and mum had jobs that in today's terms would probably pay the national wage.  They didn't even own a phone in the early years of my life.  Yet they got on with looking after me without any extra help or payment and we got on with it.  We surived, we managed and and nearly 40 years later everything is still fine.  It also hellped me to be a self-sufficient adult who has had a range of jobs from being a cleaner through to being an academic.  Yes diabetes is there, yes it is scary (mum, dad and I have lived with the fear of what it might do to me for most of my life) and in the past as well it was extremely difficult to manage - boiling syringes before each injection with very thick needles, no blood testing, sudden hypos (day and night) but we got there and are so close for having done it.




Hi AJL,

I understand fully where you are coming from with your posting...my best friend who is 37 now was diagnosed aged 8mths old... Her parents had to go through exactly what yours did..and have great admiration for parents who had to go through this...My friend even recalls the uproar caused when diabetics had to pay for there needles and syringes..and drug users got them free...I cannot imagine the financial burden that was put on parents of this time. Nor have I any comprehension of how your parents must have felt..

However can I also mirror what Adrienne has also said...Today for example I had to nip to our local larger town, I dont drive so have to rely on public transport...However at 11.15am..Nathan's school phoned and he was'nt well...High BG...and they needed to send him home..or more like they did'nt want the responsibilty of him being at school unwell...this is a different issue......I then had 5 phone calls off them...asking how long I was going to be etc.....they had'nt followed any part of the health care plan...when I questioned what Nathan's BG was..there reply does he need to do it??..school informed me he looks really unwell..my reply was till I know the reading I cannot advise you of the next course of action...etc.....the saga continued for a further 3 phone calls...till I told them I was queing for the next bus back and would be there asap.

This was a first trip to Barrow for myself in about 6weeks...on my own...just me time etc..hope that does'nt sound selfish on my part....Know I have the feeling again that I cannot go anywhere again...away form my house..because I'm needed within 5 mins of a phone call at school..to care for Nathans needs..

Heidi


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## sasha1 (Jul 10, 2009)

sofaraway said:


> Best of luck Heidi, I had a friend who got her DLA taken away and on appeal she won.
> 
> I didn't claim DLA when I was entitiled not sure if I would still be entitiled to it.




Hi Sofaraway...

Thank you for your wishes of luck...means a great deal to me...x

My understanding of DLA in diabetic adults is...you may not qualify..unless you have associated complications of diabetes...such as severe hypo's which require someones intervention/help/assistance, retinopathy, neuropathy,glucoma, amputations, kidney dialyisis etc...If my understanding is wrong apologies and I'm sure someone will be able to clarify this further.

I would say give the DLA a ring the phone number is: 08457123456

Or a runner suggested seek advice from your local CAB....

Heidi


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## AJL (Jul 10, 2009)

I don't want to get into a debate about what is better or worse but would just liek to highlight some points as I have been trhough virtually every type of treatment apart from the pump

1. Mum could never just send me off with my dinner money - the problem with one or  two injections a day is that you have insulin working all day, you couldn't top up because you had eaten. or just reduce because you weren't hungry  Therefore everything had to be extremely tightly carbohydrate controlled and you had to eat six times a day all carbohydrate counted to stop the insulin swamping your body i.e. breakfast, mid-mroning snack, lunch, mid-afternoon snack, dinner and then being woken up, as a small child, at 10pm for a snack to hopefully get you through the night.   You could never eat "normally" and there was never that much time between snacks/meals.  

2. As far as I'm aware no school had a care plan - if there was a problem then mum had to help irrespective of where she was or what she was doing.  My mum had never been able to drive so had to rely on buses even when we lived in a council house in a village, walking or begging lifts from neighbours.  

3. You didn't know if you were heading for a hypo as you couldn't check in advance whether your BG was 6, 5, 4 or whatever - e.g. I collapsed from a hypo when at a dancing class, walking along the street with my mum and dad to the park etc etc. Several Christmas Days started with my mum having to get me out of a bad hypo whilst dad getting walking round the room whilst the glucose worked to stop me slipping into a coma. There was no way of knowing how much you needed for that particularly hypo or for checking the effect that it had on your sugar - we couldn't test so we had to guess.  On the side we never knew for certain how high BG was but knew to worry if the dipstick test was dark brown that we needed to do another test for ketones.  

4. If you were ill you were put into hospital for a week at a time and they really didn't know what to do and obviously my parents were visiting every day. the doctors couldn't test accurately and it was only my mum who stopped one dooctor who tried to give me more insulin when knew instinctively that my sugar was low.  At the age of 7 the hospital expected me to be able to inject myself when I went onto  two injections a day - no choice.  Reagent strips, when they were introduced, had to be used by me at school to monitor what was happening when i was still very young.  Hypos still happened e.g. if it was a hot day or I was taking part in sports activities.

4. But the worst thing about the lack of being able to test properly, adjust insulin (there wasn't even the HBA1C test) was that you never had a very clear idea of what was happening to your sugars so the risk of complications was so much higher - as a child and teenager I grew up in the knowledge that complications were expected within 20 years of diagnosis (30 if you were lucky).  I thanked my lucky stars that I got through the first 30 years with no major complications, unfortunately now things are no so straightforward and I have lost part of my sight due to a CRVo. hence why I am having to check what I've written with either a screen reader or copying in into a word document at 24 font.

As I've said before, and apologies for repearting myself, I do know what it is like to be on one injection, two injections through to five-seven injections a day plus up to ten blood tests a day.  All are very difficult both to deal with as a parent and to live with as a diabetic, whatever your age.

In my opinion things are not easier or more difficult now - they are different.  there is a trade off between how much injecting and testing that is done and the risk of complicatitons - but it is a trade off.  Personally I think that acknolwedging that is very important rather than trying to identify what is better or worse.

Anyhow this is my last email about this topic but I hope that this does provide some understanding of the challenges that all diabetics have faced/do face and the same with regard to their parents.


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