Treat the process like an exam
During the appeal hearing you are being evaluated and the criteria for PIP is strict, so take your time to properly prepare for it. Use your letter of appeal as a framework for your answers and arguments, making sure you know your case inside and out. You may be asked seemingly random questions and lots of preparation will help you to answer confidently and correctly.
Ask for help
Remember, you don’t have to go through this alone. There may be a Specialist Social Worker in your CF team. The Cystic Fibrosis Trust can also provide guidance and practical advice. Having the support of someone who has expert legal knowledge and a good understanding of CF will really help you to navigate smoothly through the appeal process and with evaluating and gathering evidence to support you.
Keep a diary
From as early on in the process as you can, keep a diary of your good and bad days. As CF can affect you differently from day to day, this will help to demonstrate what an average day is like for you. You can then make a note of exactly what you do on that day and choose the right descriptors* that apply. This will also help you on the hearing day itself. If you are feeling well, this diary will provide an accurate reflection of how the condition affects you overall.
Organise your paperwork
You will already have lots of paperwork about your appeal so keeping it organised is really important. The day before the hearing, read it all through and make sure you know all the details in the documents. One recommendation is to have a sheet of A4 paper written out with a summary of the support you need but especially the descriptors you have chosen.
Be clear about your condition or role as a carer
As CF is an invisible condition, it can be difficult for people to fully understand what it is and how it can affect people. You should assume that those involved in the hearing know little about CF so be very clear on how it affects you. Give real examples of the challenges you face or the extra work that is involved as a carer; such as meal preparation. Ellie described life with CF as a triangle where she could only choose one activity (ie cooking or work or treatment) which helped those present understand what living with the condition was like.
Use your own words
When you are in a stressful situation, such as an appeal hearing, it can be easy to let someone put words in your mouth. Before answering a question, take a deep breath, really think about your answer and use your own words to describe your experience. Ellie was asked: “You stated on your form that when you don't take your nebuliser you know you feel a lot worse. So when it makes you feel so much better, why wouldn’t you do it?” The Tribunal had assumed that using dornase had a short-term benefit. Ellie felt it was important to explain that dornase did not actually make her feel better immediately, and therefore motivating herself to take her nebuliser was a problem.
Keep notes throughout the tribunal
This is good practice in any hearing as it helps to keep track of key points people have raised that you are unsure of or would like to question. The mum we spoke to found this useful to keep a list of things she felt needed clarification to use when she was given her opportunity to speak at the end of the hearing.
Prepare a powerful summary
The end of the hearing is your chance to reinforce the reasons why you are appealing the decision so have a clear and concise summary prepared. This is a good tip for those of you attending your hearing alone as well as those providing support to others as you will need to explain the help you provide.
Remember, you are only asking for what you need to help live your life and there is no shame in this. So be confident, walk in with your head held high and ask for what you deserve!
*Ellie says know your descriptors inside out, and why you have chosen them. Ask for advice and information to help you to prepare. For more information (or a copy of the PIP descriptors) please contact your Specialist Social Worker or the Cystic Fibrosis Trust helpline on 0300 373 1000 or 020 3795 2184 or email: firstname.lastname@example.org.
Personal Independence Payment was introduced in 2013, replacing Disability Living Allowance as the benefit for people aged 16 and over with health conditions and disabilities. Find out more about PIP.
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