The key to successfully claiming DLA is being able to demonstrate how you or your child's needs are greater than a comparable person without P.C.D.

As a person with P.C.D. under the age of 65 you are entitled to make a claim for Disability Living Allowance – DLA or Personal Independence Payments PIP. The same applies to parents of children with P.C.D. – you are entitled to make a claim on behalf of your child or children.

Am I eligible to claim Disability Living Allowance/PIP?

DLA/PIP is a social security benefit for people who have an illness or disability. It is a tax free benefit, does not reduce the amount of any other benefits which you may get and is not based on how much money you earn or have. It is intended to provide extra money for people who need:

  • Help with personal care – this is the care component
  • Help with or when walking – this is the mobility component

It can be hard to fill in the claim forms for DLA because you have to focus on all the extra or difficult things, which you or your child need because of PCD. For example:

  • Do you/they have hearing loss?
  • Do you/they have limited mobility because of reduced lung function?
  • What are you/your child unable to do because of PCD?
  • How often do you have to attend hospital/clinics?
  • How often do you wake in the night due to coughing? Do you need help to go back to sleep?
  • What medications do you have to take and how long do they take to administer?
  • Do you have any side effects from the medication? e.g. nappy rash from antibiotics or having to use extra sun screen because your skins goes orange when on particular medication!
  • How often and for how long do you have to have physio? Can you do it for yourself?
  • Try to demonstrate in the form how your day-to-day routine revolves around what you need to do keep well e.g. physiotherapy, nebulisers, taking medication etc

The key to a successful claim is demonstrating how you or your child’s needs are greater than a comparable person without P.C.D. It is a good idea to get specialised help to complete the forms as it is difficult to know what facts are relevant – ask you specialist respiratory nurse or visit the Citizens Advice Bureau. If you don’t already claim DLA, an application pack can be obtained by calling the Benefits Agency on 0845 712 3456 (voice) or 0845 722 4433 (text only). You need to ask for forms DLA1. If the claim is for a child under 16 remember to ask for a child pack. If you prefer you can request a pack from: Disability Living Allowance, Warbreck House, Warbreck Hill, Blackpool FY2 OYJ Alternatively, you can print off an application form or find out more information from the Department for Work and Pensions website.

Once you have submitted your form it will be assessed and you will be notified about which rate you will be awarded. Occasionally people have had their applications turned down or are awarded a lower rate than they think they are entitled to – if this happens do not despair. Ask the Benefits Agency for a decision in writing and appeal. Please note that the time to record your appeal is time limited to a month. Help can be obtained in how to fill out the forms and how to appeal from the Benefits Inquiry Line on 0800 88 22 00. Further helpful information about benefits can be found on the Contact A Family website.

Personal independence payment (PIP) is a benefit for people who need help taking part in everyday life or who find it difficult to get around. It replaces disability living allowance for people between the ages of 16 and 64 inclusive. Like DLA, it can sometimes be difficult to fill in the claim forms for PIP. If you require support and guidance you can visit the Citizens Advice Bureau page. You can also visit the Disability Rights UK support page for further information and support.

Keeping ahead of COVID-19

Covid-19 is very unsettling for all of our PCD community – we will be regularly updating this page with latest information and ideas on how to keep yourselves entertained whilst self-isolating.