Child DLA renewal refused

justine09x

Hi everyone,

Just a bit of help please my son is coming up to his 3rd birthday and was diagnosed with severe asthma at 6 months old by a hospital consultant. He has been receiving dla care high rate for two years and was up for renewal which has been refused. This year had been his worse year he has had 32 chest infections since birth and needs constant care especially at night as he coughs so much he vomits and I regularly have to reassure him administer mess and clear up vomit. I basically survive with no sleep as I'm scared to death he will choke on vomit. Also I have another major concern in that I currently save some money each month from dla to find taxis to and from hospital if he needs to be nebulised or admitted as I don't drive. The local a and e department is threatened with closure and the nearest one is over 30 miles away and I don't know how I will bring a seriously ill child home from that far away without having dla to help with costs?

Basically I don't know what to do his current award runs to end of September which stated on letter rate awarded due to needing help with bodily functions throughout the night. This hasn't changed so why have they done this and what can I do?

Many thanks

GlasweJen

Child DLA is comparing care with a child of equivalent age, there's also the expectation that the family will learn to cope with the illness/disability.

Asthma is one of these conditions that's very variable. 2 years after diagnosis most people can expect to be under control with medication, it sounds like this isn't what's happened with your son.

When was he last admitted to hospital, how often does it happen and when did he last have an asthma attack at night? Do you see an asthma specialist/ asthma nurse who could support an appeal?

HB58

You ask 'What can I do?'.

You options are 1) do nothing 2) appeal or 3) reapply.

It might be worth you seeking individual advice from somewhere like CAB.

andrea_louise

It is also worth bearing in mind, that if you are on means tested benefits, or in receipt of working tax credits, there may be the opportunity to claim back travel costs for hospital appointments. See here for details of the England scheme. http://www.nhs.uk/NHSEngland/Healthcosts/Pages/Travelcosts.aspx
hth

rogerblack

The first thing to do is to write, or phone DLA, and get a 'written statement of reasons' on the decision.
This will explain in more detail why they made their decision, and extend the time to appeal by at least 2 weeks.

This will help you decide what arguments you should make in the appeal.
Have you kept a diary of what's happening?
How much you have to take care of him, when he vomits, hospital visits, ...
Starting one now may be useful.
It can be submitted both with the appeal in a couple of weeks or so, and with any later submission to the tribunal in a more extended form.

(A tribunal is likely to take around 6 months to arrange. Do go to the tribunal, yo have a much better chance. http://www.youtube.com/watch?v=2pNKg6diFh0 is an outline of the tribunal process for ESA. For DLA it is similar.)

kingfisherblue

A couple of practical points;

* have you tried propping your son up at night? If he is in a semi upright position, it can help with both breathing and vomiting. Try a couple of pillows under his mattress, or bricks under the head end of his bed. To stop him slipping down in the night, use a narrow pillow under his knees.

* have you spoken to your son's consultant about the force of the coughing causing vomiting? He may need his medication reviewed. My son's medication was reviewed several times before we managed to sort out something that is fairly decent for his condition - in addition to seretide and ventolin inhalers, he has cetirizine and montelukast daily (plus various other medicatios for other conditions).

* Is the vomiting definitely because of his asthma? Could he also have another medical condition such as reflux? Ask the consultant if further tests are advisable. Frequent vomiting can cause pain and damage to the oesophagus, but there are medications that can help to prevent this.

* is your son's bedroom too dry or too damp? My son cannot breathe properly in a damp or cold atmosphere, so we never have wet washing hanging around - if I can't dry it outside, it is put into the tumble dryer. Also, in colder weather, the heating comes on automatically overnight if the temperature falls. This helps to prevent asthma attacks for my son. Some children cannot cope with dry atmospheres, so a bowl of water on the radiator can help to keep the air moistened.

* Do you have a baby monitor? This might help you to relax a little more, as you are likely to hear your son if there are any problems overnight.

* Can you catch up on sleep during the day? My kids see their dad and grandparents at the weekend and I go to sleep then (I'm off to bed in a minute!) Being overtired doesn't help you or your son, and can make you feel more anxious.

* Have you been in touch with http://www.asthma.org.uk/ for further help and advice? They might be able to help, especially with your worries about your son choking.