Congenital heart disease DLA no approved

Ronnie_Roo · 16 March 2018 at 5:42AM

My 2 year old son was awarded DLA at the higher rate back in 2016, he has congenital heart disease. At 6 months old his hole in his heart was repaired however he still has Mitral valve stenosis plus a few other issues.

They send us a form to fill out again now he is two and I assumed that it was to adjust his care needed etc. Filled it out with documentation from the London hospital he attends in jan and sent it off and heard both from them, I decided to ring up to see what was going on and they told me his case had been denied on the 9th January 2 days after they had received the form !!!128545; but hadn’t thought to write and tell me this!!
The reason they gave was the after my sons operation he has the same care needs of that of a normal child his ages!
Firstly it’s clear the person reading the form and letters have no medical knowledge as they would know that mitral stenosis is a narrowing of the heart's mitral valve and that it doesn't open properly, blocking blood flow into the main pumping chamber of your heart. My son could go into heart failure at any time and to help my son I was given a defibrillator machine just in case, this is stated on the form how many “normal “ walk around with those every day??
Now I have to ask them to look at the decision again once I receive this stupid letter. Can anyone help me in writing a letter as I am too angry at the moment and words fail me.

Just to add we where refused the first time we applied back in 2016 and was given the exact same reason.

w06 · 16 March 2018 at 9:08AM

As _ shel says, it's not baed on a diagnosis, or a possibility, it's based on whether and what extra care a child needs over and above a healthy child of the same age

kingfisherblue · 16 March 2018 at 9:30AM

Does your child need any physiotherapy on a daily basis, or take medication? Do you have to attach him to a machine for any reason? Can he feed in the same way as other children or does he need a pump?

As previous posters have said, DLA is based on the care needs above those of a child without any health conditions. It is not based on diagnosis alone. Even if there are some extra care needs, there might not be enough to warrant an award, so if, for example, the only additional care need is medication three times a day, an award is unlikely because it doesn't take much extra time.

What are the other issues that you mention? Do they result in extra care needs?

Having an operation often means that the care needs are reduced, so it is a reasonable assumption if you have not detailed any additional care needs on the form. Carrying a defib or knowing that your child might go into heart failure, whilst distressing, are not additional care needs. If he needed you to use the machine regularly, it would be taken into account, but medical evidence would also be needed.

It's very difficult to have a child who has health conditions and/or disabilities. I know - my son had his first surgery at nine hours old, when he had to have four operations to save his life. Although he had surgery, my son was left with lifelong problems as a result of his medical history, as well as having Down's Syndrome and the associated learning disability. For him, it was the care needed as a result of his health problems that meant he was awarded DLA, because his needs are so significant. If he had been born with 'just' Down's Syndrome, he probably wouldn't have received an award as a baby, as all babies need constant care. I've added in a small part of my own story to demonstrate both that I do understand from personal experience, and to illustrate why a condition itself does not qualify for DLA.

If you feel that your son has additional care needs as a result of his condition, you need to illustrate those needs and show how they are above the needs of another child of the same age. As he has other issues, you can include any additional care needs for those as well. But as I said earlier, carrying a machine, giving medication, and being aware that your son could go into heart failure at any time does not mean that an award is due. Care needs have to be reasonably significant compared to another child of the same age.

Sncjw · 16 March 2018 at 7:23PM

Hi I have aortic stenosis although it!!!8217;s aortic and not mitral it has affected me from birth also.

I have been told mine is mild but I did not need extra care to a child that doesn!!!8217;t have the condition for my heart.

I may require surgery to replace the valve in the future but very much doubt it will meet dla or pip standards.

I tried to claim for my deafness and despite that causing more issues than my heart I was denied.

Pip is based on care and mobility.

swingaloo · 16 March 2018 at 9:36PM

My son has Congenital Complete Heart Block and his heart could stop at any time, he has grown up with it and now works full time with it. Never been entitled to any benefits because of it.

Congenital heart disease DLA no approved

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