Hi new to this pip assessment at home sat

I contracted meningococcal meningitis at 16 years old spent a lot of time in intensive care and went onto a Ecmo machine and a iron lung intensive machinery and ventilation let me with idiopathic intersistual lung disease (pulmonary fibrosis) I'm now almost 32 and use oxygen (ambularty) on any movement ... I have a pip assessment Saturday due to being moved from Dla which I have claimed since 2002 I'm terrified I will loose out now and don't know what to do I really on my notability car to have a little life any thing that requires me to move I need 6ltr of oxygen ... please help worried x

24 Replies

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  • Thank you

  • Hi Claire please try not to worry to much they came last year to me .and like u I was worried I wouldn't get it,but I found the lady very understanding .best wishes j x

  • Try not to worry, I think in your circumstances you will still get it so good luck.x

  • Good luck for Saturday, Clai51.

  • I had a home assessment three years ago. I found it helpful to make a few bullet point notes, making sure to put down everything no matter how small you need to relay to the assessor. Before you start ask what their medical qualifications are, at my home PIP he was a paramedic. I had another assessment in February this year, at their centre and she was a psychiatric nurse, didn't really understand how Bronchiectis can affect you, said she would Google it!! . Remember that they can't possibly know everything about everyone's illness. Don't take anything for granted,treat them as is they know nothing and make sure you tell them everything, no matter how insignificant you may think it is. Don't let them rush you, this is your chance to speak. I kept my enhanced mobility and care. I know it's terrifying, try to keep as calm as you can, have someone with you if it helps. Good luck!! X

  • Best to remember that the rules on walking have changed from the DLA 50 Mtrs to PIP 20 Mtrs Which is a total disgrace. It does not mean you can walk more than this but below that you are in severe discomfort. I am in the throws of this and even though I could make that distance I am in constant pain and do not know when my breathing will fail me?

  • The thing is oxygen allows me to walk distances .. later on in the day tho once I'm sat down is when the discomfort starts... headaches restless legs ... with out my oxygen my levels drop I'm prescribed 6ltres on movement :)

  • That is you severe discomfort moment if it was not for the Oxygen then you would not have any quality of life without it would make you house bound! They will look at you sitting explain how you just did for that as well.

    One of the biggest problems is most peeps do not want to tell people they are not well! It is important that you do not say "On a Good Day" You need to say "On a better day"

    Hope it all goes well and tell us your experience!

  • Thank you for the advise , on sitting my levels r as good as the next person it's as soon as I'm mobile that my levels drop , I'd do anything to be able to take my children on full days out etc but with the ambulatory canisters they just don't last long enough :( .... I have issues with people seeing me with my cannula in aswell seem trivial after everything I've been threw so my house is rammed with the latest toys computers etc and my hildren want for nothing luckily I have great family and my children get taken out with them like this weekend there off on holiday I'll be home some waiting for them to come back ... I don't want anybody else present at the assessment will this go against me xx

  • I understand why you may not want someone else there but it can be very usefull to have a witness/support? One thing to remember is they cannot force you to do anything! If they ask you to do something you cannot or could be too difficult you have the right to refuse and give them the reason why! I had one kept on saying "Just try to then."

    As for latest tech etc. why not?

    I have had a fight with all the differant bodies and get fed up with the "Well you do not look ill?" Brigade.

  • I'm quite a private person to be honest and wouldn't want some one speaking for me see how I feel be glad when it's over and done with x

  • I don't think you'll have any problems but make sure you ring the DWP the following day and ask for a copy of the assessors report. Just so you are aware of what has been said and in case you need to appeal.

  • Thank you for this advise xx

  • Hello Clai31 , Please don't worry I'm sure you'll be fine. It's good to have copies of your respiratory nurses report and your doctor could write a letter for you that supports your claim. Doctors have all of your Consultants reports.

    I had my home assessment at the end of last Summer ,I had sent with my form some of my reports the nurses have sent to my doctors and they all said how active I was and that I have an excessive use of oxygen...I'm on 3 litres a minute but think they'll put me up to 4 on my next evaluation because my sats are in the 80's on 3 litres... the bottles don't last long and you must use yours up quickly on 6 litres? I have a concentrator I use when I'm gardening , do you have one that can give you that amount?

    Hope it goes well for you , my assessment went well , good luck with yours! huff xx

  • My concentrator goes upto 8lt I am able to have the liquid oxygen which last a lot longer than usual canisters but with young children at home I think it will be to dangerous as u have to have the huge canister in the back garden thanks for the reply xx

  • On my DLA to PIP Assessment I learnt that you don't have to do what they ask you to do ... if it will cause pain/discomfort or some other problem. "Stand on your right leg only, please" she said. Osteoarthritis means that I would (assuming I'd succeeded) have been in agony so I refused explaining why. They seemed to phrase the requests as instructions, if they do this think before you act and, if there is a problem then politely decline explaining why you declined (or they will say you were being obstructive)

    Good luck (by the way mine was INCREASED!!)

  • I have no issue doin as they please aslong as they don't expect me to do it with out my oxygen lol xx

  • I don't know what to expect them to ask me etc x

  • Join a group called benefits and you , you pay a subscription but it is definitely worthwhile as they tell u how to interpret the questions , with pip mobility part they have changed the walking parameters , they have put it down to less than 20 metres, but I'm guessing if your on 6litres of 02 you probably struggle to walk that far , you have to put down how you are in your words day

  • It's a hard one becouse the oxygen improves my life so much it's without it I can't do anything xx

  • I'm so nervous for the interview I'm scared at what's going to happen if I'm refused it I'm on higher rate Dla at the min with a motabilty car without my motabilty car I'd be house bound :( xx

  • Sorry,I can't remember all the questions but they generally follow the old DLA form about cooking, moving around the house, sleeping, washing/bathing, outside mobility then the extra bit (as I remember) are:

    Can you stand / walk / stand on one leg / stand on the other leg / touch your toes / arms out / look up etc, etc.

    Rightly or wrongly I answered all the questions by comparing my current physical condition against me without the issues. I mostly use a stick to walk so "How far can you walk" (what a sly question that is ... they leave off "without significant pain or discomfort") I respond based on walking WITHOUT a stick as I see this as part of my disability.

    Hope this helps

  • It's all confusing me I know for sure I'd rather be answering yes to everything rather than yes I can do that if I have my oxygen maybe a day in our shoes they wud realise it's not just a illness we have it's a controlled life x

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