financial support

[kareniliff2002]

I have read on the PCD support website that I could be entitled to Disability Living Allowance (PIP). Its never been something I have thought about and not really sure how to go about it. Has anybody applied for this and been successful?

[Sylviejp]

Hi Karen, if you are applying as an adult with PCD it is unlikely you will get it unless you are severely disabled, i.e. unable to walk 50 metres, and need help with daily functions. They have tightened up the rules and even though the application form is shorter than it used to be, its still long and complicated.

If applying for a child, I'd advise getting help from Citizens Advice or someone who has successfully applied, for guidance on filling the form in. You have to imagine the worst day, and fill in detail of how things are done, and what help is needed. It can be a bit depressing to look at the worst day, but that is what the "decision makers" at PIP need to know about.

All that said, there's no harm in trying, let us know how you get on!

[kareniliff2002 in reply to Sylviejp]

Thank you. It's never been something I have thought about but I have been finding my condition more and more difficult manage recently. I had a really bad chest infection with pleurisy oct-nov last year and has just not felt the same since. I will let you. X

[Sylviejp in reply to kareniliff2002]

As Karen says, worth trying, if you can get an appointment with the local Citizens Advice Bureau they can help with the form filling!

[Leocat]

Hi Karen. I am 57 and was born with kartageners syndrome. PCD is one of a triad of symptoms. In 2014 my specialist clinic advised to reduce working hours and apply for PIP. Like you I had no idea about this. As a result I applied, was assessed and awarded and was able to reduce my hours. However one year later DWP sent the same form to complete (they said it was to check the correct benefit was being paid) I returned the form advising the questions remained as per the previous application, although I was now having IV treatment 4 times a year as opposed to 3 the previous year, and that my condition had slightly deteriorated and that there was no cure for this disease. Despite this i was reassessed and told I no longer qualified as I did not meet the descriptor scores, although previously I had! To cut a long story short I intend to take the case to tribunal with the help of CAB. This is a very real disease, with debilitating daily symptoms and which is progressive with no cure, so I would say as an adult with this illness, although a hassle, apply, and let's not just roll over and die and let this condition go unnoticed by these bodies with no knowledge or understanding, when we also require the help. It is a disability! Good luck Karen whatever you decide to do X

[TerryBun Administrator]

Hello Karen,

Further to the two very useful replies you have received, I have been looking online to see if there is anything useful out there.

This website, Benefits and Work, appears to have some useful information and also gives a link where you can do a PIP self test form, just to see how likely it will be for you to qualify. Unfortunately it appears that when applying for PIP, they do not take much into account with regards respiratory problems and all that goes with it.

I've mentioned previously in another post, that it appears they don't particularly even want to know know what is wrong with you or what condition you have, they just want to know what you can or can't do on their list of criteria, with yes/no tick boxes to statements, such as, 'Can take nutrition unaided'.

Here's the link, it might be worth checking it out, just so you can see what it's all about.

benefitsandwork.co.uk/perso...

All the best,

T

[Lizmcg0]

Hi I am an adult currently on DLA and have been for sometime. However I am concerned that when the DWP review me to put me on to PIP I will no longer qualify. The whole PIP system seems to be flawed. Would it be worth getting some professional advice about this for adults with PCD?

[fionac66]

Liz

Not sure who could give professional advice.... Citizen's Advice are quite helpful. I personally think it is going to get more difficult to get DLA/PIP for PCD adults as needs fluctuate so much.

Fiona

[PCDWIFE]

Hi, Im new to this site but I just wanted to say that my Husband qualified for higher rate DLA all his life and has now been assessed for pip and he has got it, it will be reviewed in 2021 and the adviser that came to the house to see him was really sympathetic so i think it depends on who you see. As people have said, it such a rare disease no-one knows about it and find it hard to understand just how difficult it is for the people with it to manage day to day.

If you can get an appointment with a disability adviser at your local job centre that may be a good start. We live in South Wales so unsure what the procedures are in England.

Tasha