Today (Tuesday, 28 March 2017) I received an email from the CF Trust help desk who replied:
"Hi Peter,A copy of all the guides I've used for making a PIP claim, information passed to me from the CF Trust and also a template letter requesting a Mandatory Reconsideration can be found here at this link.
Thank you for contacting the Cystic Fibrosis Trust helpline.
You mention that you feel because CF can be a hidden disability, or one which may not be obvious from the appearance of someone, that other people may perceive it differently or negatively. You say that these people may not see the daily struggles that someone with CF might face, and therefore may make assumptions or judgements.
I’m so sorry to hear that you feel this is an attitude which extends to both the general public and to professionals in the DWP. You mention that this all began when you were asked to move from DLA to PIP, and that you became anxious at this point, having heard worrying stories from others with CF who had gone through the process of applying for PIP. It sounds like the timing of the letter also added stress, as you weren’t able to call the DWP until some days later, and technical problems made it difficult to get through for some time.
You mentioned that the process of filling out the form was time consuming and frightening, in that there was lots about your health and about CF that you hadn’t necessarily thought much about until you had to write it down. We too recognise that it can be really difficult to put the difficulties and challenges faced down on paper, and can involve having to focus on things which you may not necessarily wish to think about or write about.
I’m so sorry to hear that while you felt the medical assessment had gone well, you were told that you would not be awarded PIP. I can hear your concern that the medical evidence you submitted wasn’t taken into account when looking at your application and that the DWP haven’t read the information properly.
You mention that in the time since the decision your health has been impacted, you have lost motivation and your appetite, and are struggling with panic attacks and anxiety- it sounds like things have been really difficult recently, and I want to assure you that we are here to support you however we can. We recognise that the process can be a real challenge, as the PIP criteria often may not seem easily applicable to all aspects of CF, and many people who are eligible do have to dispute decisions to get an award eventually. It’s something that we are working on policy-wise, as well as trying to make sure that people going through the process have as much advice and support as possible.
You mention that you have until 16th April to dispute the decision- would you like to challenge it? I have attached some information on asking for a Mandatory Reconsideration for you to have a look at if you wish. Sangeeta, our Welfare and Rights Advisor, can also support and advise you- would you like us to put you in touch with her?
I can hear that this is a really difficult time, and if you ever need to talk, we’re here to listen. You can give us a call any time between 9am-5pm, Monday to Friday, on 0300 373 1000 or 020 7795 2184, or send us an email on email@example.com.
PLEASE NOTE: the documents are guides to give you an idea what to do during PIP claims.
Please refer to your Social Worker for assistance.
Please don't attempt to do anything independently as the Social Worker will have processes you may have overlooked.