Refused DLA for 13 year Old.

How disgusting refusing children i know li lhad ksame problem yrs ago with my daughter i just done an appeal they wasnt getting away with it x you all just fight for it they dont realise what ud parents have to go threw day in nte out xxxxc

Hi I am just in the process of applying for the first time and have been very interested in reading all your comments. I know that since my little girls was diagnosed 8 weeks ago we have spent a fortune, different food and an abundance of snacks all add up and not to mention all the new sporting activities that she is now doing to help keep her BM's low without increasing insulin. at least 2 nights a week overnight BM's and trips to school to sort her out. This I know is our duty as parents to give the best so she is able to live a long and active life however we have never claimed anything in our lives and I do think this contribution is fair and just for our daughter so that we can continue give her the best of everything. I hope that my daughter will continue to cope well however already she is falling behind at school due to the number of hypo and hyper so my intention is to place the money away into a fund to provide additional education if she needs it.

Well been a diabetic since I was 2yrs old, now 37. I have never been entitled to dla and my diabeties in my teen was all over the place. Hba1c was rare if it was in readable figures with out the machine or test just reading high. So why should they be entitled to dla? Its not like it really does need more money to manage.

sorted said:

Well been a diabetic since I was 2yrs old, now 37. I have never been entitled to dla and my diabeties in my teen was all over the place. Hba1c was rare if it was in readable figures with out the machine or test just reading high. So why should they be entitled to dla? Its not like it really does need more money to manage.

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You articulate very clearly why children SHOULD be entitled to DLA.....because without significant support children's Hba1c results and overall control is typically terrible, this is what the allowance is trying to prevent....by giving support to children who are not able to effectively manage their condition themselves.... to facilitate the additional care they need that will hopefully improve their control, quality of life and their risk of long term complications later in life......

I am flabbergasted that there are so many type 1's out there that clearly articulate their poor childhood control but don't think families should be given any support to prevent this being the case for others. It just seems SO ill considered.

My daughter's HbA1c results are not terrible but there is no accident to that. I didn't wake up the day after her diagnosis knowing how to artificially replicate the actions of a working pancreas....I've dedicated hours upon hours to educating myself how to do this and hours upon hours on an ongoing basis implementing that knowledge in order to maintain consistent stability.
As for the comments that teenagers should be able to manage the condition themselves....My daughter was diagnosed aged 3 and therefore the years that it took me to educate myself how to manage her condition were when she was very young and I am working hard to pass that knowledge on to her....I therefore hope she will be able to manage her condition with some independence in her teenage years. But what about the parents whose children are diagnosed much later, or indeed as teenagers....do we expect a 13 year old to be able to educate themselves and manage their conditions immediately upon diagnosis. I suggest the answer to that is clear, of course not!

the argument is not whether teenagers need help ..... its whether they need financial help. Which i don't believe they do.
If they are poorly controlled, they need more support. from experts, nurses, doctors Dieticians, even other diabetics.
You don't need financial help to look after a teenage diabetic, unless there are other complications.

cuttsy said:

the argument is not whether teenagers need help ..... its whether they need financial help. Which i don't believe they do.
If they are poorly controlled, they need more support. from experts, nurses, doctors Dieticians, even other diabetics.
You don't need financial help to look after a teenage diabetic, unless there are other complications.

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Cuttsy, very valid point....I agree that all diabetics would benefit from more support from experts, nurses, etc. etc. If the government was to decide to scrap DLA and direct all the money paid to worthy recipients (not to mention the exceptional costs it must waste in the extraordinarily poor administration) into offering better professional support, ensuring everyone had access to the latest technological advancements and the necessary training to make optimal use of them I'd be cheering Hallelujah....probably along with the rest of those impacted by this exceptionally challenging life long condition!

However, in my experience and, if the posts on this and other forums are anything to go by it is also the experience of the vast majority of others, sadly this support is currently not there. If you point is that money would be better spent ensuring it is, we are in total agreement.

In the meantime, it is up to the individual (or in the case of minors their parents) to fulfill this role..... time, for most of us, is a big contributing factor to income.

I have type 1 diabetes and was also refused dal I appealed and won my appeal so do appeal your sons decision good luck

i found out i was type 1 in may 2012 after becoming seriously ill after 3 hrs of trying to get a blood sugar reading they finally got 1 and it was 47.5 since then iv'e been on the sick for 7 months severeley depressed suicidal and self harming even though i take my insulin correctly a hypo comes on with no warning signs and although iv'e applied for dla twice iv'e been refused both times aparantly i'm not a danger to myself and don't suffer from blackouts etc etc my step son has moved from telford to look after me due to how i feel and due to not coping very well iv'e worked since i was 16 and i'm now 41 never claimed any sort of benefits and yet a lady that i work with she gets it the system makes me laugh it just makes me wonder how they would cope and feel if they had this terrible illness !!!!!!

Just a Friendly warning ,there should`nt be any reason for DLA , if NHS Diabetic sevices were really doing their
duty towards these children . Having been there and suffered the denial from the servers of the Novo Cartel , 32 yrs of ill health ,like me you will have to challenge the "experts " please do your best for your children , or they will have a life time of suffering ahead .
Read all you can even on the forum you will see people who have done this . The G/M Insulins do not suit suit everyone , you will have to take on board there are powerfull commercial interests at work , some Doctors will only follow the template not think outside the box , it is you or childs health at stake , learn from other peoples misfortunes , Doctors are not Gods .
I can quote from my journey , was told by a clinic nurse my blood pressure was up , said it was the Consultant , she said why , I told of an exchange at the last appointment when asking of Hypocratic principals was told I needed pscychiatric treatment , she responded that he tells that to us all the time .
Please get your children well again ,it will take a fight , try different Insulins , IDDT dont have commercial sponsership , the NHS
have a duty of care ,if you have difficulty try PALS

Hi my daughter is type 1 an has a Mickey button, sh is really quiet poorly with both conditions. I have to go.the school to do her injections every day an am up a lot with her. Her dla went under review an we had most of it stopped I am appealing against it an am waiting for tribunal soon. The government have got to cut ten billion of the budget so are soon this toa lot of people in the hope that you won't appeal! So make sure you do. X

My son turned 16 last August type 1. His DLA was refused for the following reason: "due to information supplied by me and his clinic , he is no longer deemed to be at risk of hypos, hypers or dizzy spells or fits and not at risk of aggressive behaviour " his bloods are awful and he thinks he's super human now he left school and goes to college and had an apprenticeship....... Wait for it........ As a tree surgeon...... Using a chain saw every day !!!!!! On top of that , why do they have to pay for their glucose tablets when other people get free medication eg... The pill , levothyroxine etc... Diabetics can't help that they have this illness but at 70p per packet ( 1 packet per day) it's not cheap ! We are going to tribunal as I am not happy about their reasons given more than anything else. BUT....... They want to hear from my son directly as taking a parent to speak for them could seriously damage their claim , they stated on the form !!!!!! He's 16, in denial, thinks he copes with it ok, hates anyone knowing he has diabetes etc.... Absolute madness asking him and not us ..... Frustrated to say the least .

Hi, I put in for DLA, a few years ago. They turned me down. I appealed. They turned me down again, I phoned them and asked if they had read my form, they said they had. However, they confirmed that they had at no time contacted my doctor, nor did they have any medical training whatsoever.
I wrote a lengthy letter (4 A4 pages, and I write small) and asked them to take time to read the letter. I told them exactly how my conditions affect me on a daily basis, I then asked to contact my GP. I was awarded DLA. My advice would just keep applying.

i was 7 when they started me on insulin (1977)
but i only got dla when i lost my sight in 1998 and then only the lower rate care and lower rate mobility

Hi as a 30 year who has suffered with diabetes for 22 years I find this argument interesting !! For the first 10 years I suffered with hypos in the night with them being so severe they ended in fits. This resulted is numerous trips to the hospital an also mainly my mother checking on me every hour of the night to see if I was ok 365 nights year as the first few really shocked them an one resulted in a coma for 5 days ... My problem was I didn't have any symptoms or signs of a hypo during this day either!!With improved medication over the years these episodes have now subsided but I've just asked my mum if it was today would she claim... Her answer is a resounding no an she states that that was her job and you find away to cope she said what would be the point in trying to convince you nothing had changed an you were still the same as everyone else an then claim for things... Her standpoint being that nearly all parents with children have sleepless nights through one thing or another but with the right equipment which costs nothing it can be managed.... Fact is children today even healthy ones with no conditions at some point will give you sleepless nights and I can understand where the government are coming from an as I diabetic on 4 injections an 3 tablets a day do I consider myself disabled again the answer is no!! When children hear about this you are openly telling them they are disabled which is not the case they can do everything their healthy counterparts can.... The human body is adaptable an will get used to the constant wake ups but for me if my child needed me 24 hours a day I'd find a way to cope and as for being unable to work I think that is a different department and dla is not to make up that money!! An if these hypos an high sugars are so constant then that needs to be looked at although there is still no cures there are now lots of ways to improve control.... To be honest from my standpoint I'd be gutted to find out I was on dla yes gutted to be diabetic and then the blow of I'm now considered disabled...

Totally agree with @Emma1905. I believe that DLA for diabetics is ridiculous. Diabetes is not a disability but it is a challenge. I've had it from a young age, dealt with it (sometimes poorly) but for myself or my mum to have taken dla would have been dishonest. I would suggest less moaning, better attention to the challenge and then control it properly. We've all had night hypos but with adjustments they can be handled and pretty much made to disappear. It's not easy, but no-one has to give up work because of it unless there are severe complications later in life. Try being positive and you'll be amazed at how easy it can be. It is a million times easier today than when I got it 30 years ago but even back then dla is the last thing I would have wanted or indeed deserved.

You have the right to not only appeal but also if the appeal fails you can also take it to a tribunal. I would agree that you should see your local cab service as well. Hope this helps you

Mike

to qualify for DLA an agreed criteria has to be met it doesn't matter what condition a child has whether it be diabetes or another condition if they meet the criteria and this can be evidenced they qualify. If your child has care needs above and beyond that of other children the same age then they should qualify. We have just been awarded the higher rate for our diabetic child who is 7 when I compare her and our life to pre diagnosis there is a huge transformation in care and supervision she requires. You may argue that diabetes is not a disability, it is in-fact recognised as a non visible disability. We would all give our right arm to have children that are non diabetic however as this is not possible I will apply and take what my daughter is entitled to to be able to offer her the best life possible.

It may be recognised as a non visible disability but that doesn't make it so. If you want it to be a disability then good for you but if you take the approach that it isn't, then life is much better and much more positive. Let the money be spent on real disability.

I dont remember saying that I wanted my child to have a disability, however at the moment it does seem like a disability and believe me we are trying to be positive, I can only comment on our own situation and wouldn't try and assume every case is the same. My child met the criteria for DLA because of her situation and degree of care and supervision she requires on a daily bases. I didnt make the rules and criteria for this process, I applied with an honest reflection of how life is currently and my child was awarded on that basis.

I would never suggest that you wanted your child to have a disability and I never said that you did. Diabetes can be very tough especially for the parents. I just happen to have a different view on this which I feel I have a right to having experienced it for over 30 years. I repeat it is not a disability but the more you look at it as such the more it becomes so. I have never let it stop me doing anything and as long as I am able, it never will. I feel that I would like the tax payers money to go to those that are more needy and deserving.