Unable to speak due to pulmonary fibrosis - any experience?

Alicat_23
Alicat_23 Online Community Member Posts: 2 Listener
in PIP, DLA, and AA

Hi

My husband has an autoimmune condition (sarcoidosis), pulmonary fibrosis and asthma. He's lived with this for a long time and has been fairly ok but he has recently deteriorated and is now having problems working. I was diagnosed with cancer last year and I get PIP but I was appalled as many people are, at the length of the phone call and I know my husband absolutely won't be able to do this. He struggles to talk for more than a few minutes and if he tried he'd be at serious risk of a flair up leading to an immediate A&E visit (this has happened several times in the last few months).

Has anyone had any experience or knowledge of dealing with this kind of problem?

Comments

  • Jimm_Scope
    Jimm_Scope Posts: 5,409 Scope Online Community Specialist

    Hi @Alicat_23, welcome to the community 😊

    I'm sorry to hear your husband's health has deteriorated lately, that must be a difficult change for you both. It really can be a difficult process to get PIP. You can be at the assessments and phone calls to support him, but if even that is too much you could look into becoming an appointee for him. We have some information on it here: Becoming an appointee | Disability charity Scope UK

    The page I just linked also has some information on reasonable adjustments you can ask for to make it easier for him during the application process.

    I hope this helps a little, let us know if you have any other questions or if there's something you aren't sure about

  • flour
    flour Online Community Member Posts: 91 Contributor

    Hi @Alicat_23

    I see that Jimm has suggested becoming an appointee but I'm not sure this would be appropriate if your husband hasn't got any mental difficulties.

    This is because you'll be taking control over his benefits for him which would be depriving him of independence when instead its up to the DWP to work around his inability to speak.

    The most important thing is that he starts a new claim for PIP today.

    If he can't call because of his disability then he needs to start a new claim by post. This is very, very easy to do. On the gov uk website there is a section on how to do this (link below).

    He sends a letter on a piece of A4 paper to a free post address with one sentence on it. Saying 'Dear DWP please send me a form to claim PIP to my home address which is 'Address, Town, Postcode', yours faithfully Mr First Name, Surname). The address to write to is 'Freepost DWP PIP 1.'

    https://www.gov.uk/pip/how-to-claim

    Once, they've posted the form to him he needs to fill out the form and send it back (presumably with your support). Later he'll get a second form 'how your disability affects you' (which no doubt your familiar with). Be clear to write the form that he has overwhelming difficulty around speaking to the point where he cannot speak and the risks if he tries to.

    It's important to note that not everyone has a telephone or face to face assessment for PIP and the DWP may decide he does not need one to get an award. Instead they may decide to do a paper based assessment where they work it out behind the scenes and he'll not be contacted at all.

    If however, they decide to do an in person/telephone assessment then he can attend and simply not speak as he's unable to do so and/or the health risk is too great. It's the DWP's problem to work around this and find solutions (such as doing a paper based assessment).

    If they want a telephone assessment then it'll just about 2 minutes long to simply confirm he little he can speak and then end the conversation and complete the assessment using his written answers on the form with an almost completely paper based assessment.

    Or, they may decide to do one in person and he can use aids/adaptions to communicate such as how he manages now (e.g. typing on a screen?). All this would do it further help his claim as it provides clear evidence of the trouble he has.

    If they decide they want an assessment and he's not well then Citizens Advice can support you with pushing back and insisting on a paper based assessment as an Equality Act 2010 reasonable adjustment.

    But, do not worry about the possibility of an assessment which may well not happen as DWP could decide he doesn't need one. The most important thing is to start the claim today by sending off the letter to 'Freepost DWP PIP 1'.

  • Alicat_23
    Alicat_23 Online Community Member Posts: 2 Listener

    Thank you so much, this is a huge help and makes me feel a little more confident. I think we both feel a little intimidated by the whole process so gaining as much knowledge before we start is important.

    We'll make a start today.

  • flour
    flour Online Community Member Posts: 91 Contributor

    Hi @Alicat_23

    Thanks for coming back on and I'm glad you're feeling more confident.

    Hope you've managed to make a start and please come back to this this thread if you have any more questions.

  • Bydand
    Bydand Online Community Member Posts: 193 Empowering
    https://forum.scope.org.uk/discussion/comment/901346#Comment_901346

    Hi,

    I also have pulmonary fibrosis and I know well the difficulties that the disease can have on a persons ability to regulate the breathing cycle during conversation. Even when calm and relaxed (which is hard to achieve when really short of breath) it can get too much… if like me my disrupted breathing and difficulty in regulating oxygen levels causes me to start coughing uncontrollably , which just leads to a vicious circle of shortness of breath and gasping.

    I am in Scotland so I claim The PIP equivalent called ADP. The two are fairly similar I believe.

    I manage to do a paper based application which was easy enough. I had a fairly brief telephone call on the back of this asking me a few questions and that was that.

    At the start of the telephone conversation I stated straight away to the lady that I may have difficulty in regulating my breathing during conversation and it may take me a little longer to finish a complete sentence. I stated I may stop speaking all together but would resume after a few breaths and I wasn’t being rude.

    The lady was very kind and said knowing that was helpful

    I hope you get on ok and things work out for you both.

    I don’t know the ins and outs of your husbands line of work but eventually my symptoms got progressively worse to the point where I was unable to be at work. I applied for ill health retirement at the age of 54 after a very long and protracted period of forcing myself to be at work but was eventually awarded the higher tier award from the civil service.
    Again I realise the difficulties your husband will be facing and the real worry to both of you. If he hasn’t already he should maybe look into IHR. Pulmonary fibrosis is fairly straight forward to evidence due to the inevitable scarring of the lungs and the likely poor or very poor results from any lung function testing, let alone the eventual likely outcome. The disease also meets the usual IHR criteria for being both permanent in nature and symptoms with no known cure. In any IHR application proving permanency is the biggest challenge to most folk that apply. With Pulmonary fibrosis you meet the criteria threshold just by being diagnosed with PF….as it it both progressive and permanent.

    Please reach out if you think I can help with advice in any way.

    Kindest to both of you

    Scott

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