PIP ....Oxygen

[cazza34]

Hello I have been on ambultory oxygen for 6 months now. My sats drop very low when k move around if I climb the stairs with no oxygen it drops to 66...my question I'm thinking of applying for pip will my oxygen be seen as an aid or therapy...and what is the difference in terms of a pip application. I have hypersensitivity pnemintus, had it 3 years. Now on Methotrexate and steriods daily...get very breathless and I'm working less as just don't have the energy. Any help appreciated.

[Damon1864 Volunteer]

Hi your oxygen is needed in your every day and is part of your medication. You have no need to worry about it affecting your pip. Hope this helps let us know how things go.😊 Bernadette xx

[pippan]

Hi cazza, what you need to keep in mind about PIP is that it is not so much about what you condition is but how your condition impacts your daily life, the difficulties it causes you caring for yourself and how it inhibits your ability to get around. You should definitely apply and good luck.

[Linnie13]

hi cazza i to have same condition as you ,my sats drop very low also you shouldn't have any problems with pip ,I got mine first time ,as it impacts dreadfully on our lives , im on mychopenolate and steroids daily ,I have a oxygen imogen concentrator that is easier to go out with than the canister I started with a bad cough 8 years ago, and hos out it down to reflux ,I was up and down to hos for 5 years then dec 2017 ,I went to out patients ,and they wouldn't let me leave ,was put on ix immediately,as my lungs were full of carbon dioxide ,they treated me for pneumonia,was in hos for two weeks ,when I came out the hos that had been treating me for reflux sent me to another hos that is known for research in lungs ,and doc told me I had H P like you , yes it does tire you and without ox get breathless ,let me know how u get on ,think your the only person i have spoken to that has this x

[cazza34 in reply to Linnie13]

Hi Linnie13...ah we messages b4....yes on new drugs now had intravenous methotreate n steriods over 3 days at hospital a month ago no climbing up the dose until I get on 2 x tablets twice a day...I take 15mg prednisolone also daily but the plan is to get me off those. This drug is an immunosuppresent so means I can get more infections. My hubby works in a library so I do pick up colds from him..currently have one! I'm being nosey.. do u receive pip and what components.....do u have a blue badge....did they come to ur house to do assessment? Sorry for questions

[Linnie13 in reply to cazza34]

email me (email address removed by admin) I will give u my phone number x

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[Lesarmstrong in reply to Linnie13]

I was first diagnosed with hp in 2014 I also take mycophenolate along with prednisone. They won't give me an imogen as I need 6-8 ltrs when moving around so I have the canisters which are heavy and run out very quickly which means I cannot go out as often as I would like. I get full rate pip and the enhanced rate since I started on permanent oxygen last year this was because I had more lung removed due to lung cancer returning. I sometimes find the medication makes me more short of breath

[cazza34 in reply to Lesarmstrong]

Hi Lesarmstrong thanks for ur reply. Can I ask did it HP progress or has it always stayed the same since 2014? I'm on at the moment r tablets myco let day and 15mg pred. I've sort of got 2 things going on 1. The HP and lung inflammation that comes with this and 2. My oxygen levels drop a lot when I'm mobile...both make me breathless and cough...I also see this is a side effect of the myco.....my family think I cough less but I'm.using more oxygen on a day to day basis...so it's confusing. I have the bloody oxygen canister ha ha so big and heavy. I've got an oxygen assessment 19th March so hoping to get a concentrator. Do u think it's the myco or reduced lung that makes u cough? Do you get enhanced rate pip for mobility and personal. I think I'll apply as I'm self employed and have cut back on work lots this year, and envisage the same for next year.

[Lesarmstrong in reply to cazza34]

Hi, fortunately the hp hasn't moved since 2014. I get full enhanced rate on pip, both carers and mobility allowance because I'm prescribed oxygen 18 hours per day, I have a concentrator. They tell me the cough is just consistent with the disease although since they prescribed me 10mg of MST twice per day its reduced my cough by about 80%, I sometimes wonder if the mycophenolate adds to my breathlessness although consultant says no. I have been on 30mg of Prednisone daily and have recently started to reduce it, I'm now taking 15/10 alternative days. I also found that Co-codamol surpresed the cough as well but MSD turns of that part of the brain that makes you cough apperently, it works for me and I'd recommend you ask your GP for it. My oxygen levels are around 92 if I'm just sitting around but go down to 80s if I'm mobile. Hope this helps. Les

[Linnie13 in reply to Lesarmstrong]

hi les what does msd stand for as my cough is awful

[Linnie13 in reply to Linnie13]

sorry you dont have a concentrator i dread my condition getting worse 😏

[Queenbean]

The oxygen is medication and if you receive any help managing that medication ie someone helping you with holding the cyclinders or setting them up that counts under support with managing medications .... few bits of advice take a look at the points allocated for pip a quick google. Secondly check out the guidance notes for pip assessors on the government site another quick google, those together gives you a good insight into the criteria and how your needs for mobility and daily living will fit into them... please request a home assessment they have provision for this with ppl with mobility issues .... good luck let us know how you get on !

[cazza34 in reply to Queenbean]

Thank you for your reply...I carry the big tanks on my back....heavy but I still work and exercise. I get back pain sometimes...but I need my hands to work so I can't pull a trolley. Yes thank you I'll look into this.

[Guy59 in reply to Queenbean]

that is interesting Queenbean i never took it as medication , i am now on oxygen too cylinders etc and do need help with it, i am on pips on the lower level on the personal care side got 11 points 2 years ago , with this info i would imagine can get me over the 12 point mark, been on oxygen 2 months now , thanks

[Piperava in reply to Guy59]

Of course oxygen is medication. The consultant has to make out a prescription before you can get it.

[Lesarmstrong in reply to Guy59]

Remember also that you cannot go near naked flames so you can't cook whilst wearing oxygen permanently so you need someone to cook your daily meals

[Spacecat1]

I applied for pip and they checked I was using oxygen via doctor and consultant and I have copd they were very helpful.i would say after about 5 weeks ring them the lady who was looking after me forgot to send my paperwork to the other department. But the phone call made the difference telling me I had got pip. Always talk about the problems you are having especially getting up and down stairs. But yes its worth applying. Also if you had to give up work apply for universal credit

[Hidden]

The point to make cazza34 that you can’t always carry those heavy tanks on your back because of back pain. For PIP, they need to know what you can’t do, the opposite what the likes of us strive to avoid talking about. I’m sure a lot of deserving cases miss out because brave souls don’t admit the difficulties that they have to live with.😟 I’m glad that I don’t have to deal with those sometimes unfeeling people.

[Hidden]

Hi cazza, your oxygen is definitely an aid, it could also be seen as a therepy. I called it an aid all through my pip form and got it first time. Make sure you write it in as many boxes as necessary, even if you feel you've said it before! The person reading the will be looking for an answer to each question, they don't want to have to look back at your previous answers. Tell them how it is on your Bad days!!

Hope this helps, Mandy

[Spacecat1]

Pippen. Is right it's how it impacts on your daily life. Can you go without oxygen etc. Have a look at groups like age concern they and also citizen advice can help you with forms etc helping with what to say etc they really helped me. And if you have problems walking request a home visit they came to m house more relaxed.and you ca have a friend or relative there to support you.

[alanloddington]

It appears we suffer with the same condition, I applied for PIP and there was no problem, got the full amount after filling in the second questionnaire.

Good luck xx

[cazza34]

Hi Alan....did you get for mobility or personal care? What level standard or enhanced....

[Offcut]

I have IPAH, RLD, COPD, AF and a few other things but not on Oxygen? I got Enhanced on both parts of PIP. It is important that you backup all you say with consultant/gp letters regarding your conditions. Do not try and big yourself up talk about your bad days as that is when you need the support and it affects your life the most. Never say on a good day use "a better day" Mobility question states can you walk 20 metres? But if you can but are in severe discomfort then you should get points. Have a good look around at what you use to help you do your everyday things. When I looked I was amazed on how many things I used to to get up go out etc. that I have built up over time and seen something and thought that would help me do such and such?

good luck

Be Well

[Tarapup5]

I too am on oxygen and when I was required to re apply for PIP I did not have to go for an interview enhanced rate of PIP was awarded so go for it and write what you put on this post i.e. explain how this disease makes you feel, unable to get out, unable to walk 20 metres without stopping for breath and any other health problems you have. You must phone PIP for a form if you have a special nurse or social worker then they can help you.

Good luck contact me if I can help

[goat-lady]

Hello I have HP to. Can I ask how rapidly it your HP progressed? I was diagnosed just over 2 years ago. Managing without ambulatory oxygen at the moment but seem to get tired v easily. Best wishes. M

[cazza34 in reply to goat-lady]

Hello goat-lady. I was diagnosed Nov 2015...no symptoms before. I was on holiday in Japan I got I'll with fever cough bit like flu....then breathlessness thought it was asthma or bad chest infection. So HP diagnosed. It was ok for 2 years then started feeling more tired and 8breathless than usual. My sats dropped on walking to 66 then come back up if I sit down. I bought a sats monitor and monitored it myself. It dropped every time I moved. I asked for an oxygen assessment ...that was 6 months ago. It's made a difference I can walk anywhere as long as I have oxygen.

[goat-lady]

Thanks for your reply. My oxygen sat drop to high 80's when I move about and I really notice it. Hope I can keep going for a butt yet. M

[cazza34 in reply to goat-lady]

I'm sure you will be fine...it affects us all diffefently...do you get PIP?

[goat-lady]

Not tried applying for pip- can't face the paper work ! Went thro the process for my husband when he was alive.

[Elvisajc]

What is pip

[cazza34 in reply to Elvisajc]

Personal independant paynents