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Child's DLA reduced for unreasonable reasons??

(17 Posts)
Whisperingstories Wed 11-Oct-17 17:33:41

My youngest son has received DLA at high rate since he was about 2 years old. He has a rare (169th person in UK to be diagnosed at the time) condition that is incurable and life threatening. He has to have medication, via a pump, twice a week to keep him alive, without it he wouldn't be alive today.

His award was up for renewal and I have been informed that it has been downgraded to lower rate care.

A part from the annoyance that they obviously hadn't looked at the claim properly, as the person I spoke to gave me the reasons. I'd photocopied the claim I had it in front of me. He told me I had only put this and that on the form, when clearly that wasn't what I had written.
Such as he said one of the reasons was because I don't get up with him in the night. I said I do and on the form it clearly states that I get up in the night at least 4 times a night and for at least 4 nights of the week for anywhere between 30 mins to all night.

He's taken my information and it's going to reconsideration.

But my question is, one of the things they have said was a reason for not awarding him higher rate is that that he is now at an age where he should be preparing his own medication and also be able to access pain relief himself without prompting and administer it himself without any help.

He is 11 years old. The medication he has twice weekly involves using a syringe which is to draw medication from a vial. The needle is then removed from the syringe and what is called a therastick is attached - a needle with a wire attached. It is then put on a pump and the needle is then pushed into his leg and it take a few hours to go through.
Would you say that at 11 he should be making the medication up himself without help and putting the needle into his own leg?

Plus I haven't ever allowed my son to go and get his own paracetamol (he has tablets because calpol doesn't work for him), take them out of the packet, break them up into four pieces (he can't swallow them hole) and then take them. They also said they he should know when he needs to take medication and shouldn't need me to tell him when to take them. Again am I doing it wrong, should he be doing the above himself? (this also included the antibiotics he often has).

BlueCows Wed 11-Oct-17 17:39:02

No he shouldn't be in charge of his own medication especially the injections. In a couple of years, maybe.

Sirzy Wed 11-Oct-17 17:39:43

I think it depends on the child to an extent.

Ds is nearly 8 and knows when he needs medicines (15 a day) and which ones he has at each time. I wouldn’t expect/allow him to administer them himself though. I suppose in a few years we will start to move towards that if he is showing signs of being capable. Some of them I doubt he will be physically able to do himself though.

I would certainly in your reconsideration letter detail the process and why he isn’t yet able to do it himself.

Even if at 11 they normally expect it to be done independently then the fact he isn’t able to could actually be an indicator of his increased care needs.

Slightlyperturbedowlagain Wed 11-Oct-17 17:45:41

No not with the meds you describe. At 11 I would expect a diabetic child should be able to administer their insulin (but even then with substantial support regarding dosage) and severe asthmatics to know when to take inhalers, but not syringe systems and vials. What do his clinical team think? They will probably be able to offer a clearer perspective on what is 'normal' for a child of 11 to do.

2014newme Wed 11-Oct-17 17:47:55

My 9 year old can take paracetamol herself why isn't he allowed to do that?

Plainlycrackers Wed 11-Oct-17 17:49:33

OP I am so sorry you are having to go into battle over this, I have no experience to offer only sympathy but it is interesting that he is expected to self-administer at 11 and yet teens at school are not allowed to self administer pain relief in fact girls in their late teens at boarding school are not even allowed to be responsible for their own regular medication like the pill or pain relief for menstrual cramps.

Sirzy Wed 11-Oct-17 17:52:29

Have you seen the decision makers guide? I found it very useful when doing DS renewal recently as you can look at the specific conditions and what they look for

Whisperingstories Wed 11-Oct-17 18:03:42

It's not that he can't take the medication himself. I get the paracetamol etc, break it up and then hand it to him with a drink. It more the fact they state that he should know when he is in pain and go and get the medication himself out of the medicine cabinet and take them.

upperlimit Wed 11-Oct-17 18:05:14

It's not just taking the medicine whispering it sounds as though the DLA expect a 10yo to be entirely responsible for his pain relief and he may forget to leave a minimum of four hours between doses or may accidentally take it more than four times a day. Or any number of reasons that may result in an accidental overdose. I can't imagine a hospital would take the same view as the DLA.

upperlimit Wed 11-Oct-17 18:05:43

Sorry, xpost

BishopBrennansArse Wed 11-Oct-17 18:09:02

Because it isn’t fucking paracetamol, plainly. Try to RTFT.

Whisperingstories Wed 11-Oct-17 18:22:31

Thanks everyone - It's not just me then. I was sat there thinking am I not seeing things right because I'm angry, or are the DLA being unreasonable in their judgement.

2014newme Wed 11-Oct-17 18:39:37

Bishop, you Rtft the op refers to paracetamol

FlakeBook Wed 11-Oct-17 19:04:16

I don't know tbh but children mature at different rates. Usually diabetic children are expected to dose their own insulin and inject or administer it via pump at secondary school. But tbh thar is a tall order. Many diabetic six year olds can actually administer the injection but still need the dose to be calculated.

DLA make some terrible decisions. Ask for mandatory reconsideration as a first step.

timeismovingon Wed 11-Oct-17 19:08:29

You need to go to the next stage - mandatory consideration. Your post looks as though you are saying they have taken the details and are going to reconsider. I believe that you need to do the MR and within 30 days. If you need help go down to/ring/email your local Citizens Advice and get an appointment as they will help you with it.

MamaLeen Wed 11-Oct-17 19:09:33

I am sorry your child is so sick. I don't have any advice for you as such.
Just wanted to say to buy paracetamol in a shop you need to be 16 years old. That's when the government find a person responcible enough. It's crazy to think your child could do medicine with injections etc. He is too young and could easily make a mistake without meaning to. I hope you manage to get this sorted.

brasty Wed 11-Oct-17 19:11:52

I think you would be better asking a consultant or Dr this, rather than people that don't really understand the condition.
Diabetic children often do administer their own drugs at this age - just looked at a study which said 11 years of age is the mean age for this. But I suspect none of us have any real idea of what is reasonable in your case.

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