DLA for Type 1 diabetes - help urgently needed for reconsideration letter... please can you help?

[Chocol8]

My sister's friend received a letter from DLA on 21 April to say she will no longer get DLA for her 14yo dd who has diabetes. Because she got so upset, she accepted that nothing could be done so left it til the last minute to ask for help.

This means i have only got until Wed to get a letter to them. I have drafted the following but do not know if it is strong enough and do not know enough about diabetes to use all the correct terms.

I have tried to piece together words from the internet, but don't know if it's any good. If you are able to help, please can you? Many thanks. I will include copies of her attendance record at school and her consultants letter to say she has been quite unwell lately.... SORRY, this is very long.

I write in response to your letter dated 21 April 2008. You have decided that I cannot get Disability Living Allowance for my daughter, XXXX.
I would like to ask you to reconsider your decision. I address the points in your letter; namely that you feel my daughter does not need help getting around and that she does not need help with personal care.

XXXX has suffered with Type 1 Diabetes since she was two years old, she is now 14. She has a named Diabetic Nurse, XXXX and is under Consultant Paediatrician Dr XXXX XXXX at the XXXX Hospital. I speak to XXXX at least once a week to discuss any concerns about XXXX?s condition. XXXX is happy for you to contact her regarding my daughter. Her number is XXXX

You state that she does not need help with getting around, however XXXX is unable to walk when she is having a hypo as she is acutely sick, to the point where on occasion, she has vomited her stomach lining.

To attempt to walk would put her life at risk as she would collapse or could wander into the road. To reach such a point whilst having a hypo would lead to a serious deterioration in her health and hinder her recovery by an unnecessary amount of time.

Before she goes out of the house for even a short length of time, XXXX records her blood sugar level with her Optium Xceed blood glucose monitor. If she needs to, she will eat something to raise her blood sugars and wait until she gets a better reading before being able to do anything further.

XXXX currently takes the following medication, but this could change again if she continues to wake up with high sugars as has happened recently:

32 units of Novorapid before breakfast
30 units of Novorapid before lunch
30 units of Novorapid before tea
42 units of Levimir at bedtime.

XXXX has to carry her medication with her and does not leave the house without carrying her GlucoGen kit. However she is unable to administer this herself, she is dependent on either myself, XXXX the school nurse or the hospital to administer the injection immediately to stabilise her.

If I receive a call to say XXXX is sick, I have to reach her immediately and call a taxi or an ambulance to get her to the hospital urgently.

You have refused DLA because you say she needs no help with personal care. It is not unusual for XXXX to wet the bed in the night, which disturbs both our sleep. I have to fully strip the bed, make it up with clean sheets, shower XXXX because she is too sick to do it herself and dress her in clean nightwear. This takes over an hour and may have to be repeated if she is sick again.

My daughter presently attends XXXX school and has on a number of occasions missed morning registration due to her high blood level reading. However, if she has not been hospitalised, she will ensure she attends school for the time she is able. She could stay at home and not attend for the whole day, but she has a willingness to learn and always makes an effort to attend school.
Having said this, the school have notified me that her absences are recorded and although they are aware that these absences are due to her diabetes, I have been threatened with a £50 non attendance fine. XXXX makes the utmost effort to attend school when her levels are safely between the recognised readings of 4-7%.

Her tutors are concerned about XXXX's as she regularly falls behind with her school work due to her diabetes.

Diet plays a very important part in someone with diabetes and XXXX eats and drinks very sensibly. She knows the foods that will have an adverse effect on her condition and takes steps to avoid them. The special low sugar food which she eats are expensive and can sometimes be hard to buy locally.

I am currently unemployed but seeking work which is local to home. I have a younger son who needs to be cared for when my daughter is ill and I have to make arrangements for him to be looked after should XXXX become sick. I am concerned that if I find a full time job, but receive calls out of work to attend to my daughter that I could be sacked.

Diabetes is a life threatening condition and XXXX has suffered now for 12 years. It is not going to improve as she gets older and could possibly worsen as she grows, impacting severely on both her life and the lives of those around her.

I would invite you to call Dr XXXX, Consultant Paediatrician whom I mentioned earlier to confirm the particular needs that XXXX has regarding her diabetes. His direct line is: XXXX. Alternatively, you could call XXXX?s Diabetic nurse on XXXX.

I am unsure whether to mention that Mum is looking for work as could she not be considered her dd's full time carer? Or does this not happen is she is older and at school??? This is a very different letter than the reconsideration i wrote for my ds as he is AS/ADHD.

Thanks very much for reading it and giving yourself eye strain - any help would be gratefully received.

Just wanted to add that I also need to put that she misses out on things her peers do, sleepovers, parties etc and that anything can trigger a hypo: happiness, upset, her periods, stress, illness or a change in weather.

Sorry, I'll go away now...(scuttles away quickly).

don't know all that much about such things but - I wonder if it would strengthen the letter if you say how often various events happen - e.g. check blood sugar x times every day, wet bed x times every week, a hypo x times every week, x times called to school etc. I wouldn't mention the looking for work at all.

Thanks very much TotalChaos, I have asked her and put them in the letter. That's very useful info, but i don't know what was said on the DLA form as she didn't keep a copy of it.

"when her levels are safely between the recognised readings of 4-7%."

The medically correct reading would be mmols not a %, but that's me just being pedantic!

I think the letter is essentially fine but I wouldn't mention looking for work (DLA is for the child, not the adult caring for her) and I would put more timings down, as TotalChaos said. They need to know exactly how much and how often things are happening.

Thanks Sidge, i have put mmols in instead of % - it's not pedantic - this is just the sort of thing i have no clue about. I have tried to put timings in but i'm meeting Mum tomorrow to check it over and run out the letter so she can post it tomorrow. Many thanks again.

Hi there.
some useful links for you from uk children with diabetes:

www.diabetes.org.uk/Guide-to-diabetes/Guide_to_Diabetes_Archived_pages/Disabilit yLivingAllowance-claimforachildunder_16/

I would strongly suggest that you/she join this mailing list and ask their opinion:

mail.castleweb.com:81/guest/RemoteListSummary/cwd_uk

it may be worth setting up a separate googlemail account as it generates a LOT of emails - googlemail handles this very well.

re the application. You really have to write absolutely everything that you do. Seriously, some of these people do not know the first thing about diabetes. For example, don't just write 'I give her her injection'. You need to go into the details of blood testing , how you need to check the result and act accordingly, how you need to carb count the meal, etc. Then how you put the injection together, prepare the site, comfort the child, etc etc. Honestly, it takes ages but needs to be done.

Imagine that you are explaining to someone who has absolutely no conception of the disease and you're on your way. (apologies to any DLA people who do understand type 1, but up til now my dealings have been the opposite).

sorry, you'll need to c&p the links into your browser bar!

Thanks Bramblebooks, i'll take a look at these sites tomorrow and take your advice about explaining things fully. I have no idea about diabetes so if she explains it to me i can put it into words...maybe then i'll know what i'm writing about, lol!
Many, many thanks.

thoughts:

Remember that it is evidence based and is about the child, the help that they need from us.

It may be worth mentioning how often she has hypos, what they actually are, symptoms above and beyond what you have described.

Night time issues need to be flagged up as 'after the household has closed for the night' - ie after the adults have gone to bed (sticky one this, as I have often stayed awake through the night checking levels and changing beds).

Say what help she needs with her insulin dose and go into more detail about the injections and help that she needs.

What would happen to her if the injections were not immediately given?

School issues - you/your sister need to join the email support group - they will help with ideas for ways to work with school (disability discrimination anyone? !)

Discuss what happens when she is hyper - ie, needing to drink more, confusion, pains, etc. possibly needing another injection to bring her down.

sorry if I've repeated myself or yourself, am rather addled at this time of night!

Good luck! I've just clicked through the 1st link and there are little sections which you click to which tell you everything in great detail. Hope it helps!

Hi,

I agree with what everybody has said. I have type 1 myself, but I got it when I was 18, so luckily didn't have it as a child.

I don't claim DLA for my diabetes, so can't help on that front, but I do know that there a many other mothers of children with type 1 on here. Have you posted in the Heath section? They may be claiming DLA for their own children, and may have some useful advice.

All the best,

Thank you all for your help guys, it really does help. If i had the time i would post on the health section but need to post this tonight. Very frustrating that i didn't have more time with this. Thanks again. x

I know this is nothing to do with the letter but as a diabetic of 25 years (diagnosed when I was 3) the thing that worries me the most is the state of your friend's daughter.

The letter implies that she is having frequent hypos without warning, with severe side effects and it is affecting every area of her life negatively.

Speaking as someone who has battled with this disease for many years it should not be that way. Certain insulins can have the effect of making the user lose hypo symptoms and it sounds as if that has happened here otherwise she wouldn't need to test whenever she goes out the house. Also the amount of insulin she is on is very high which may also contribute to the hypos.

I would recommend her researching different insulins and discussing with her consultant before changing. This organisation is very helpful www.iddtinternational.org/ and will talk your sister's friend or her daughter through adverse reactions to different insulins (I know there has been a lot of negative publicity about levemir).

If the problems are caused by either the type of insulin or the regime these can be fixed and a more normal life achieved.

If you want any more info I'm happy to discuss it on here or CAT me.