Cystic Fibrosis

Disability Living allowance and #CysticFibrosis

Recently we reapplied for disability living allowance for Joseph, I found it quite a difficult task and we had to go through mandatory reconsideration in order to get the result we needed. I did a lot of research on line as to how to fill out the forms and what information to include so I thought I’d share with other people who are in a similar situation the kind of things we mentioned or you could mention on the DLA form.

Applying for disability benefit for your child can be quite a fraught process. People experience a multitude of different emotions when they apply or are considering applying. I found, when researching online, that a lot of parents took a long time to apply for DLA for their child because they felt like it was admitting their child was different and they found it took a long time to come to terms with the fact that their child was disabled and would be managing this condition their whole lives.

Other people felt guilty about applying for benefits, especially if they earned a decent wage, even though disability benefit is not means tested and your earning potential as parents has nothing to do with DLA. Or they were made to feel guilty by outside parties.

I found it very emotionally exhausting writing about my son’s illness and the day to day struggles with CF, it brought the whole diagnosis back to the forefront of my mind, almost like he had just been diagnosed all over again. It’s hard to write about your childs difficulties and needs, in everyday life you deal with each individual problem as it arises, but seeing everything written down in its entirety can be shocking and emotional.

I too felt guilty about applying for DLA for my son, even though I know we are entitled to it and that it will make a big difference to my sons life.

A lot of this has to do with Cystic Fibrosis being an “invisible” illness. To all intents and purposes Joe looks and acts like a “normal” little boy. When people think of people who are disabled they tend to think of severe learning difficulties, or people in a wheelchair unable to feed themselves for example. But although you can’t see Cystic Fibrosis it still has a huge impact on Joe’s life and on ours. The extra things we have to do every day as a family to ensure he stays well turns out to be a significant amount of care, especially when he is suffering from a viral or chest infection.

So here are some things to think about including on your form if they relate to your child- each child with CF is different and will have varying levels of needs, so this is just an idea about the type of things you could include. It’s easy to forget what “extra” tasks you do everyday to care for your child when you just do them as a matter of course.

So firstly take these things into consideration:

  1. Include some information about what Cystic Fibrosis is. The person who will be assessing your claim is not a disability expert. They may not know a lot about CF and they may not have up to date knowledge about the condition. For example :

    Cystic fibrosis is an inherited disease caused by a faulty gene. This gene controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food. It is a incurable and life shortening disability. It is very complex and involves a intensive, exhausting and permanent treatment programme of drugs, weight management and physiotherapy.

  2. Include any related disabilities or problems such as diabetes, osteoporosis, sinus problems etc. We included Joseph’s gastroesophageal reflux disease and food anxiety as they are related to Joe’s Cystic Fibrosis and affect his day to day care.
  3.  Do a detailed diary of a days care- include what happens on an average day and what happens on a day where the condition is worst. Include times for everything, even if it’s only a few minutes extra to your routine, it all counts.
  4. Get help if you need it from the Cystic Fibrosis Trust, a social worker, lung specialist nurse or the citizens advice Bureau.
  5. If you get turned down initially make sure you apply for a mandatory reconsideration and then an appeal if necessary. It’s definitely worth it.

Things you could include are:

  • Medications: a list of medications, pharmacy records etc. Make sure you write out how many times a day you admit dosage, how long it takes to administer medication, how long it takes to encourage your child to take the medication and also include extra courses of antibiotics and IV medications that they may have when their condition is worse, plus inhalers and nebulisers if used.
  • Physiotherapy: again make sure you include how often you administer physio, how long it takes including encouraging your child to participate, setting up equipment and tidying equipment away.
  • Other breathing exercises- make sure you include the time it takes doing extra breathing activities such as huffing and blowing sessions.
  • Extra physical activity- make sure you include that your child needs to do more physical activity than other children of the same age to improve lung function and shift mucus- they will need to be supervised during these times in case they become breathless or over heated or need help coughing up mucus or recovering from coughing fits
  • Include monitoring salt intake and loss especially during heat and physical activity and include needing to add salt to foods, give salty snacks or give salt solution.
  • Nappy changes and bowel movement problems- include if you need to change nappies more regularly or child needs help with bowel movements due to constipation, stomach pain or loose stools due to pancreatic insufficiency.
  • Mention how much time you take preparing nutritionally dense, high calories food and snacks throughout the day, particularly if your child is pancreatic insufficient and struggles with weight gain- obviously mention feeding tubes and medicated drinks if they are appropriate to you and how long it takes you to prepare for these and maintain the feeding tubes function and cleanliness etc
  • Mention the time it takes to administer and calculate creon micro dosages- sometimes repeating dosages several times depending on the speed of your childs eating.
  • Mention how long you have to take to encourage your child to eat if he/she takes longer than the normal child or if they suffer with vomiting and reflux.
  • Include extra time needed for sterilising toys and medical equipment and extra cleaning to prevent spread of disease.
  • Include extra time spent washing their hands to stop spread of disease.
  • Include extra time spent supervising  and planning to ensure they don’t share utensils/cups etc with others, go near stagnant water, go near soil, go near people with colds, go near others with CF, go near hay etc etc
  • Include time consoling them after coughing fits- which includes administering inhalers, cleaning up sputum or vomit
  • Mention all the specialist people you see on a regular basis including consultants, physios, dieticians, nurses, lung specialists etc.
  • Include any extra care you do during the night including repositioning to prevent coughing, administering inhalers at night, helping when they wake coughing, time spent checking they are not vomiting at night, nappy changes at night/ clothes changes after diarrhea etc, oxygen administration at night etc.
  • Include to extra costs incurred to you by managing the condition e.g time taken from work to look after sick child, extra food costs, hospital parking charges, costs for extra physical activities etc etc.

Those are just a few ideas of the type of things you can include on your claim form. Be honest about how it affects your child but remember to include not just the day to day care, but the extra care you need to give when they are experiencing a worsening of the condition.

Hope this helps someone else who is claiming for the first time or is renewing their claim.


4 thoughts on “Disability Living allowance and #CysticFibrosis”

  1. It can be a nightmare and one actually had a judge say during an appeal, he doesn’t look sick to me. So I’d add to not have the child in court if it’s not necessary. I had it for my son from 4-10yrs and then received a letter one day taking it all away. He’s 23 now and just went through 2 painstaking years to get it as an adult. It is a ridiculous system and so difficult to navigate. I’m sure your lists will definitely help another family xo

    1. Thanks so much for your response, so sorry to hear that you and your son had such a difficult time. It’s a very crazy system and having to ‘prove’ your child is ill is not something any parent wants to do. Hope all is well with you and your son at the moment, thanks for reading x

  2. Thank you for posting this, the DLA are proving to be a nightmare (my son only just got diagnosed after 13 years of us going back and forth to hospital unable to pinpoint why he is so sick) and its hard to ‘ask’ for something, when actually it exhausts you day and night trying to help your child

  3. So sorry to hear you’re having a difficult time Yasmin, just keep persevering with the DLA until you get what your son is entitled to, I know it sucks having to “prove” how ill your son is and justifying yourself constantly is exhausting but know that you are doing a great job and although it doesn’t feel like it, you’re not alone. I hope the DLA get there act together for you and your son starts getting the treatment he requires for his health x

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