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What do the readings mean that the PIP assessor takes with the thing you breathe in to?

MrFlicks profile image
57 Replies

I recently had my PIP assessment and during the assessment the assessor took a reading of my breathe exhaling and took three readings.

The best reading I got was 130 and the other two we're 125 or thereabouts.

I asked if that was good or bad and she (the PIP assessor) said it was not good and I then asked what would she have expected it to be and she said for someone my age (47) it should have been around 400.

I am not sure if she meant 400 for what was expected of my condition (COPD and a lung collapse in July 2013 seeing as I had been out of Hospital since the beginning of October but was unable to walk more thnen a few feet) or of someone my age with COPD.

Anyone any idea what the 130 reading means?

I might add I was awaiting a powerchair to be delivered and the council turned up to build a ramp whilst the PIP assessor was doing the assessment and she told me I should hear in 2 to 3 weeks, but after 3 weeks I phoned and was rudely told by someone with a condescending tone with a Liverpool accent (I have a southern accent they seemed to take offence to I think) I had been lied to and I would have to wait 4 to 6 more weeks to get a decision.

Is this normal for the new PIP assessment in your experience?

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MrFlicks
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57 Replies
Toci profile image
Toci

I wonder if this was a peak flow reading? A friend of mine was asked to do a peak flow test for an ATOS assessor and refused. As she pointed out to the assessor, peak flow is a measure for asthma, and she has COPD so should be tested with a spirometer. She said the assessor looked confused and put the machine away!

in reply to Toci

That is interesting Toci. Is that the case? I have had asthma for many years, diagnosed with copd around 5 years ago, and I haven't had a spiromety test for 7 years at least. I only get a peak flow one every 6 months. Should I ask for a spirometry one? x

Mollysdad profile image
Mollysdad in reply to

A spiromety test should be done annually. You should have been given a peak flow meter to " do ya own thang "?

I check mine when I need a new huffer, about once a month. Stay well !

Toci profile image
Toci in reply to Mollysdad

I have had COPD for a long, long time and been on oxygen since 2008 but I have never been given a peak flow meter or any other device. I have bought my own oximeter and spirometer to keep a check of myself.

Toci profile image
Toci in reply to

I saw a really good reply on here a while ago...... healthunlocked.com/blf/ques...

"Parvati

Peak flow meters are not much use for COPD, unlike Asthma, as they only measure Peak Expiratory Flow rates (PEF) - airflow is only measured from the upper large airways. This is fine for Asthma, which involves the large airways.

Also PEF doesn't differentiate between restrictive and obstructive airways disease, and so cannot be diagnostic as regards COPD.

In COPD, it is the smaller airways and their obstruction that is measured by spirometry, which is the 'gold standard' for accurately measuring airflow obstruction.

To demonstrate - someone could have severe COPD - with say severe obstruction of the small airways, poor 02 exchange due to alveolar damage, and yet not have much problem blowing a reasonable score on a Peak Flow Meter. Conversely, an asthmatic may have a very low score on a Peak flow, yet not have COPD.

To know your 'scores' for Emphysema and track your progress you need to ask your doctor for your spirometry results. Peak flow readings can underestimate the severity of COPD."

AND healthunlocked.com/blf/ques...

"Parvati

Peak Flow Meters only give information about narrowing of the larger airways therefore it can't give true evidence of copd. Copd is mainly about narrowing of medium and small airways, and damage to alveoli etc.

Peak Flow is meant for Asthma , which is mainly due to allergic type response that results in constriction of large airways. Some people with COPD may be given Peak Flow Meters if it suspected that they have a large asthma component as well as a level of 'true' copd."

Delahunt profile image
Delahunt in reply to Toci

Don't think it matters if cops & Adam or seperate if whatever reading shows gives a true reflection that it's low during the test . Refunding you would not do . Take the test

Toci profile image
Toci in reply to Delahunt

Why take a test which is used to measure something you do not have??????

MrFlicks profile image
MrFlicks in reply to Toci

I am replying after katieoxo60 was last poster below as have been sat outside in the sun in my new powerchair all of today so apologies for delay but am going through (slowly as typing too much at a time is tiring) and replying to posts .

I think it was a "peak flow" test yes Toci as it was definaately to see how much puff I have breathing out (exhaling).

I was asked to breathe in and take a good hard breathe out. Rather like the alchohol tests you see the Police giving drivers on TV when they stop them (though not to keep blowing - if you get my drift -as I would have been unable anyway). However this was nothing like that device the Police use and looked nowhere near as sophisticated but as I said I was asked to breathe out as hard as I could after taking a deep breathe. My best of 3 was 130 but I am not sure just how bad this is and nor do I understand what the 130 reading means.

Though I am now going to read through posts below...

@coughalot1 I wondering about this now to as didn't know there we're two types of test.

@MollysDad Who should have given me these things to do my own testing do you know by any chance please?

droo32 profile image
droo32 in reply to MrFlicks

This was surely a peak flow test. You can read more about peak flow testing here as well as see a graph of what peak flow is expected for you age and height.

en.wikipedia.org/wiki/Peak_...

The number she referred to, 400, was probably 400 liters/minute, which is probably the lower limit of normal (which is the lowest value that would be expected in a person that did not have significant pulmonary disease) for your age and height. You can use the following handy reference calculator to get the exact value you should have blow as well as the lower limit of normal you you. Just remember that when referencing the results you want to look at the values for liters per minute since this seems to be what was used in your test.

dynamicmt.com/PEFform.html

As others ave said, peak flow is not a good measurement to test for COPD and COPD is by definition diagnosed with spirometry. This is because someone can have a bad peak flow and not necessarily have COPD, RE asthma, whilst someone with COPD will always have a reduced peak flow but it will not provide any reliable indication of how severe their COPD is.

If you don't mind me asking, what do you presume were the leading risk factors for your COPD MrFlicks?

helingmic profile image
helingmic in reply to Toci

Hi Toci, What I think happens during these interviews, unless it is a specialist doctor that sees you, it can only be a generalist who may have scant knowledge of lung disease. They check themselves against charts and declare that you should have whatever the number they see on their chart.

I would rely on your consultant's assessment rather than on officials of the Civil Service.

Hopefully, you've impressed her enough for her to process your PIP!

I went to an assessment a long time ago. I was coughing like mad. He hummed! said, ah yes, typical! It's a progressive disease, nothing you can do about it! So I got through! But I disagree with these pat answers, because you take charge of yourself and you can significantly improve your condition by exercising, and keeping the spirit up.

I hope you get your PIP soon. - the form probably will lie on some desk in a pile with others and in time will be seen to!

Toci profile image
Toci in reply to helingmic

It wasn't me Mic, I am not being assessed for PIP but was relating the experience of a friend of mine, but thanks for your good wishes.

helingmic profile image
helingmic in reply to Toci

I understand. Still, hope your friend gets it (I don't know why there's so much obstacle to have to overcome as a disabled person, although we shouldn't exist) (Once an official from whom I was trying to have my benefits reinstated. The official told me that I had taken enough money from them! - Fortunately, he wasn't the judge and I did get my benefits! and retrospectively paid to!)

Toci profile image
Toci in reply to helingmic

Well done! x

MrFlicks profile image
MrFlicks in reply to helingmic

That's outrageous and sounds reminiscent of Nazi rationality.

I must admit though I wonder how much I will be able to put up with and just how long this will all remain bearable. If it wasn't for my 7 year old daughter I think a one way trip to Switzerland wouldn't be far off (perhaps 2 years away or so if I am lucky).

HeatherS-UK profile image
HeatherS-UK

I had my PIP assessment Wednesday and I had a peak flow reading of 200.... And it should be around 400.... I am 51 and have emphysema... Lots of other things too but mine was low so yours is a lot lower... I have aids for the home and have a wheelchair assessment on 23rd may..

MrFlicks profile image
MrFlicks in reply to HeatherS-UK

HeatherS If you have a reading of 200 how far are you able to walk without getting breatheless if you don't mine me asking please?

Myself if I walk about half a mile an hour perhaps one mile an hour (EG extremely slowly) I can get about 6 to 8 feet b4 I need to stop and try and take some deep breathes through my nose and outg through my mouth and then I can make it the next 8 feet to get to the bathroom but by the time I then take the next few steps to sit down in the bathroom I have to sit and relax a while taking breathes through my nose and try to get two blasts on my blue "Salamol" inhaler. However it can sometimes take me a few breathes between the first blast on the inhaler b4 I can get the right rhythm to take the second blast.

I would have though with a 200 reading if it is the same thing as mine you should be very well entitled to the issue of a powerchair IMHO.

HeatherS-UK profile image
HeatherS-UK in reply to MrFlicks

Hi MrFlicks.... I cannot walk more than a few feet and sometimes have problems just standing up.... I have POTS, arrythmias, orthostatic hypotension and VVS, aswell as fibromyalgia and cervical spondylosis amongst other things .... I am having a wheelchair assessment 23rd may but I doubt I will get a powerchair.... I get fed up of not being able to go places but I have lost the confidence to go anywhere alone as I can also feel ill whilst just sitting or lying down.... 130 is quite low I would say

MrFlicks profile image
MrFlicks in reply to HeatherS-UK

HeatherS

It sounds to me you could very much do with a Powerchair.

I very nearly didn't get one due to something I had said to a Nurse about mostly wanting it to use outside.

The point being that in order to be regarded as in need of one you must have need of it for indoor as well as outdoor use. I very quickly got that corrected as it was all due to just one sentence I had said about my wanting to try and work and not give up and that one of the main reasons I wanted the powerchair was so I can get out and about to give out leaflets for a web design and SEO business/work from home job I was desperately trying to cling to and set up to give me soemthing to work towards and so I was not just trying to live off benefits only if I was able to go out and find businesses who neeed modern websites built or their businesses being found on top of Google as I am particularly good at SEO. I was however unable to go and find clients and get any business or any work to make it work.

Once I had clarified that I did indeed also need the powerchair to get around indoors at times as I was unable to walk to the bathroom without stopping twice to sit down on the way to get my breathe back and also use my inhaler twice (so four puffs in all) it was then that I becaome eligible for the indoor/outdoor powerchair which they would not have issued without the need for use indoors which needed to be established or I would not be eligible.

I am also deteriorating week by week and so this need is increasing as each month goes by but as the specialists that put the drains in my lung admitted to me one day my outlook was perhaps 4 years to live (if I was lucky) left if I didn't get a lung transplant which is now out of the question as I am unable to have a general anaesthetic due to my series of heart attacks as they do not think I would resucitate.

You may also find the inormation in the following link regarding the points system they are usig for PIP's assessment is based upon to as it relates to being able to get the Mobilty component should you not be able to prove you need a pwerchair > benefitsandwork.co.uk/perso...

I hope that helps you out Heather.

HeatherS-UK profile image
HeatherS-UK in reply to MrFlicks

MrFlicks.... It sounds like you are having a terrible time.... It must be hard for you and your family to come to terms with the situation... I will see what they say when I have my assessment thank you for your help and advice

I use one for monitoring when more out of breath. Normal for me is 100 and over that makes me smile.

MrFlicks profile image
MrFlicks in reply to

Juliekkay you really must be struggling if 100 is a good reading for you as I know with my reading of 130 (if we are talking the same thing) how breatheless I get and how easily and I would not wish it on anyone...

in reply to MrFlicks

Yes...sometimes worse than others ... ooh 130 ... I remember that and could do so much more then. Had severe exacerbation when snowbound and could get no help...no antibiotics or steroids ... never got back to 130 after that damaging time...wish I had known about having emergency pack of mens at home then. X

PollyP profile image
PollyP

My, this is an interesting discussion. I have COPD with an asthma component and was diagnosed over 10 years ago. An average peak flow for me when I do it, which not often and is between 200-250. This has not changed over the years. However my ability to get up stairs and how out of breath I am at the top is a more reliable level of lung function for me! I can still do every thing I used to do years ago only a little slower. Walking a couple of flat miles with the dog, PR exercises, housework, work now and again, gardening, shopping, yoga, a bit of work at the gym too. I would agree about the use of spirometry as a better measure for COPD than peak flow reading. Take care y'all and wish you a great weekend.

Suzy6 profile image
Suzy6 in reply to PollyP

I agree Polly my peak flow is lucky to be 120/150 so I have put it in the drawer never to see daylight. I judge myself by how much I can still achieve in my everyday activities. You take care too and have a wonderful week-end.

MrFlicks profile image
MrFlicks in reply to PollyP

It seems there must be quite a difference between 130 and 200 to 250 PollyP as I couldn't walk upstairs without sitting down to take a rest after every second or third step. Until you lose all of the abilities you mention you don't know how lucky you are to be able to do them so I wish you the best ih keeping able to do all those things as I must say I am a little jealous and miss those things so much :)

I am however very lucky in that I have a very strong faith (Non denominational & non church going) that keeps me going and able to crack a joke and not let things get me down too much if I can do anything to fight off feelings of sadness of what I was once able to do and what I have lost. I know that no matter how bad things might get this is not all there is and just wish I could help others (especially loved ones) understand that this is not all there is.

@Suzy6 every blessing is something to cherish, be it now or whenever...

PollyP profile image
PollyP in reply to MrFlicks

Mr Flicks, bless you and yes I get there is a lot of variation in levels of function and different peak flow rates. I do really hope that you get good treatment and support for your condition. Have you been offered Pulmonary Rehabilitation? That can help in so many ways and your GP or Practice Nurse can refer you and do use the BLF help line they are great! Take care and stay well :-)

MrFlicks profile image
MrFlicks in reply to PollyP

Hey Pollyp

I was put forward for Pulmonary Rehabilitation but after assessment was told this would be of no use to me as I was beyond any help this could provide and that they could not provide me with Pulmonary Rehabilitation as my body could not handle it.

Instead they trained me to do various breathing teachniques and taught me how to clear my airways without coughing to try and make day to day things a little easier.

I now have a powerchair and am hoping I get a positive outcome RE PIP's as I will then be eligible for mobility allowace and I will then be able to improve the quality of my life as I will be able to take my wife shopping and my 7 years old daughter on educational trips out to try and make the most of the little time I have left.

I have a mobilty scooter as well as a powerchair which does 8mph which I built up by buying and seling a number of them until I am happy the one I now have should last until I die. I started off with a £200 one and now have one that is worth about £700 that I managed to get by buying and selling certain scooters I knew a few people preferred due to their hill climbing abilities (Karelma Hercules) and if I get PIP's I may have a couple of good years of pretty good quaity of life. Without a "Yes" from PIP's I am stuck to a max 9 mile radius of home for the remaing time I have left as borrowing my Mum's car for more than half hour at any convenient time is pretty much out of the question.

I am on my Mum's insurance and found driving is much easier and less tiring than driving a mobility scoter so am hoping to get the chance to make the most of at least the next 2 years before I deteriorate too much to spend any quality time outside of my home with my wife and daughter.

The most I can manage exercise wise is planting a few seeds in pots to grow fruit and veg to try and save money on grocery bills. :)

It has all been a very eye opening and interesting experience to go through which I hope is very character building for some purpose of some sort and is certainly teaching me a lot.

PollyP profile image
PollyP in reply to MrFlicks

Well, well, well Mr Flicks! What is to be done with you eh ? He,he! I am assuming that because you are so poorly you are on oxygen, tho I have read through all the posts and can't see that you are! The only thing that I cam suggest then given they won't give you a PR course is a DVD, with very gentle exercises on it, which can be done whilst you are sitting. It is called Functional Fitness for COPD and Asthma. It is by Suzanne Andrews and I got my copy from Amazon.co.uk. I use the usual PR exercises when I am feeling ok and then these on the DVD when not so good. You might like to try it or some of the COPD exercises on YouTube.? Good luck!

MrFlicks profile image
MrFlicks in reply to PollyP

Hi PollyP

If I ever get my PIP's sorted I might take a look but sadly money is too tight for such frivolities preaently as I have a wife and 7 year old and am struggling to try and make ends meet but I will add it to my list of things to think about buying.

I am presdently trying to save for a shed to put my mobilty scooter in so it doesn't get stolen though so it will have to wait a while LOL :)

But Yes I am on Oxygen 24hours a day though can cope with the odd few mins off and even manage a couple of hours on the odd morning or evening but I have to remain very still or I get out of breathe almost immediately.

It's quite frustrating.

It is getting a little more frustrating since I got my powerchair as I can't use it with my indoor oxygen and have to use the canisters but I feel awfully guilty about costing the health service extra money to keep filling my oxygen tanks which only last about 7 hours with the thing connected that stops the oxygen just pouring out if you get my drift.

I am not going to be able to avoid this soon though as once it warms up I will have to go outside as it is too hot indoors to stay inside. It was evening heat build up last year (when we lived in a top floor flat) that caused me to have series of heart attacks.

I didn't know I was having heart attacks as it was not until about the fifth or sixth time it happened that I went to hospital and they told me I had had a "myocardial infarction" that it dawned on me that was what had been happening.

I don't like going to hospital so used to just brush it off and carry on regardless (which is a good old Carry on Film) LOL

PollyP profile image
PollyP

Wahoooooo! Suzy6, wishing you sunshine and laughter.

hazel101 profile image
hazel101

Hi, I've put the peak flow away permanently, doctor decided the asthma component has been over taken by the COPD. I'm still waiting for PIP assessment, applied last Nov.

I'm concerned as although I have severe COPD I walk/exercise as much as possible, I consider myself as healthy, if I'm not having an exacerbation and can do most things albeit slowly. I don't think this 'can do attitude' is going to help my case any. That is if they ever get round to an assessment.

Good luck with your's MrFlicks.

MrFlicks profile image
MrFlicks in reply to hazel101

hazel101

I was told they had a backlog but according to what they told me (I put in my application at the beginning of October) they should be assessing November applicants this month EG May and going by the information I was given you should get your assessment this month. However I would chase it up if I we're you.

When I chased mine up I somehow got two appointment forms arrive the same day not long afterwards. One was one they claimed they had already sent, but I mysteriously did not recieve, the other was a new one with an assessment appointment the third following week.

They had clearly lied about the first letter being sent out but tried to cover their tracks. There is nothing I can do about that but hope these people realise that treating those who are the most in need and vulnerable this way is inhumane and their karma will come back and bite them, just as any wrong doings I have done has rightly come back to bite me.

Offcut profile image
Offcut

I would say that was a peak flow meter. I was told by my GP that asthma and COPD are both Obtsructive lung problems?

I am on a few forums and it seems that the PIP is in a bigger meltdown than ESA. Sorry to be a bearer of bad news but some have been waiting 7 months or more. Those that get their MP involved do seem to get results after they pass the 13 week recommended time to reply.

My concern is if they are looking at peak flow for the decision I am stuffed. I can blow 350 on a good day but I have Restrictive Lung Disease. Which means from what the consultant told me when I blow in a peak flow that blow is all of the air in my lungs and I have nothing left. I process the O2 well but I do not get enough in to process! Sitting down I am fine but once I get to my limit which is not much I am out of breath. I carried an old small portable TV up stairs recently and blacked out.

It took me nearly 2 years to get my GP's to take my breathing problems seriously even after a long spell in ICU with Lung failure and severe infection in 2008 plus double pneumonia in 2010.

After all that I wish you the best of luck and the decision goes all your way.

Be Well

MrFlicks profile image
MrFlicks in reply to Offcut

Hey Offcut

I am in month 7 since my application to but I don't think this reading is the only factor they make their decsions on. I am inclined after the above to agree it is likely a peak flow reading they took during my assessment.

There are many criteria they take into account along wiht that reading. There is a points sytem for various things the full list can be seen in the following link > benefitsandwork.co.uk/perso...

I had a similar problem with my GP's one of whom has recently repeatedly proved herself to be completely incompetent and lacking in any clear insight and having a very limited knowledge of not only my condition but also the way the drugs I had been prescribed by the Hospital actually worked.

One of her comments was that 12 hourly morphine took 3 to 4 days to wear off and that I shouldn't feel any pain four hours after forgetting to take an evenings dose.

I have a list of equally frightening things this GP has said.

I would consider changing GP if I we're you as I am certainly going to refuse to see one at the practice I go to and will probably move soon to once I get my PIP's thing sorted and would now if doing so wouldn't just complicate things further..

Sounds to me 2008 and 2010 we're not good for you so I hope things have improved as being in ICU and having double pnumonia must have been awful.

I would take a good read of that link so you know what points system they are using but also bear in mind that they use your GP and Hospital notes and that Capita should have requested access to your medical records during this process and if they have not done so you ought to find out why.

Best of luck to you to!

jimmymumu profile image
jimmymumu

the average reading for an adult at 47 with no problems is around 560-580. don't know why he said 400

MrFlicks profile image
MrFlicks in reply to jimmymumu

Hey jimmymumu

In that case perhaps it was for someone with COPD of my age that she was referring to as then it would make sense. Presumably my Lung Collapse at the beginning of July and my Heart Attack at the end of June and suspected series of heart attacks leading up to the one I actually went to hospital for adding to thingsw that have contributed to make my reading far worse...

droo32 profile image
droo32 in reply to jimmymumu

400 was likely the lower limit of normal.

"Lung function parameters vary considerably with age and body size, so that, unlike many laboratory tests, the normal range of expected values must be individualized. For spirometry [or peak flow], only low values are considered to be abnormal, so the lower limit of normal (LLN) is taken to be equal to the 5th percentile of a healthy, non-smoking population."

ncbi.nlm.nih.gov/pubmed/222...

calamity12 profile image
calamity12

  No that can do attitude won't help, you must tell them how it is on the worst days when you can't do anything. Good Luck

MrFlicks profile image
MrFlicks in reply to calamity12

Sadly this is true calamity12.

However I learnt this the hard way. You see it works in reverse as when you really are suffering you tend to not want to say how bad things are and try to put on a brave face and don't like to admit to your inadequecies as it is humiliating.

Whereas those out to scam the system are only too willing to exagerate to try and play the system and don't care that it is really humiliating to lose your functions and not be able to do things that others can do with ease.

It's a funny old world really.

onamission profile image
onamission

It does not surprise me now anything that come from Atos I put in a claim for ESA June 2013 and I'm still waiting I had my MP David Wright labour they were the ones who set up Atos in the first place he has made no difference I do believe they will continue with Atos and are well know for entering in to long contracts so if they get voted in next time we might see Atos for another 15 years. Yesterday on hear Plumbob set up a petition we all need to sign it if we are going to get changes made

MrFlicks profile image
MrFlicks in reply to onamission

As far as I am aware ATOS are finished in this regard onamission and they have backed off from their £14,000 per rejection contract arrangement and will not be continueing with any assessments hence Capita are now doing such things I think unless I have been misinformed.

onamission profile image
onamission in reply to MrFlicks

Lets hope they work at a better speed than Atos I have ask my MP David Wright to help me campaign and to get the rules changed people with lung conditions like COPD are not going to improve inhalers are not going to improve the lung capacity so why are people like us having to wait over a year to get a decision, the tests done at the GP's every year or 6 months are a true reading of our lungs.

I understand people are claiming all the benefits going when they are fit for work but our lung condition can not be '' put on '' and if we were to be political correct we would have a very good case for discrimination.

Day after day I read how people are so stressed out because they have an assessment for PIP or ESA they fear they will loose benefits they rely on to live, I would like to get a clamp and clamp David Camaron and tell him to go to work the problem is no one knows what its like to fight for breath like us or what its like to have a chest infection or live on antibiotics and steroids for months on end.

MrFlicks profile image
MrFlicks in reply to onamission

It's funny you mention "discimination" onamission as I deliebrately put in the part about the guy at the PIP dept having a condescending tone and a Liverpool accent and my having a "southern" (Aylesbury near Oxford) accent to see if anyone would comment that it was nothing to do with the North South divide and southerners coming across as "posh" sounding (even if brought up on a council estate) to some Northerners (like Scousers) and that it was merely a discrimination being experienced by all no matter where their acents came from.

Hence my last line >

"Is this normal for the new PIP assessment in your experience?"

Where I wasn't just talking about the "time" but the "treatment" factor in that it was discrimatory towards what are in reality those amongst the most vulnerable in society.

Nobody picked up on it though and I was a little surprised tbh.

I could show you a few things about Cameron and tell you things about what his ancestors have done to the lower classes that would leave you with little doubt that clever manipulation and dicrimination is indeed very much part of things when it comes to how the systems are presently being implemented.

ATOS we're however very quick to take me off of what was income support and on to Jobseekers just prior to my diagnosis of COPD and yet I doubt it would have been anywhere near as quick if it had been a decision the other way round.

Offcut profile image
Offcut in reply to MrFlicks

No ATOS want out so quick it makes your eyes ache. Gordon Brown extended their contract before he went?

katieoxo60 profile image
katieoxo60

Well MrFlicks, what the PIP examiner said does sound strange. Peak flow is usually used as a guide line as to how healthy your lungs are in Asthma and as said in your age group if you were healthy and fit you ought to have a peak flow of 500 or more, my peak flow is average between 250 and 350 with inhalers and I am twenty years your senior with COPD. I was lead to believe that anything under 250 was very bad, and needed further investigation. Don't know what to believe only that peak flow is not a diagnostic machine, spirometer is more reliable for diagnosis but not infallible either. Good luck in your search for more info on your illness and what figures mean, i would say listen to your body and what it is telling you.

MrFlicks profile image
MrFlicks

I think as you and others have said katieoxo60 it is clear 130 is not good and I shall certianly out of curiosity be looking into the other reading but as you say listening to your body is always a good idea.

It's just a pity sometimes that some Doctors don't think some us are capable of knowing ourselves that well to.

scrobbitty profile image
scrobbitty

Have read all the above with interest. My peak flow is 80. Yes 80. My GP and I have decided that it's pants and not bother any more with it LOL. I don't have asthma - COPD at very severe level of 19% lung function but I do function and apparently remarkably well mostly.

I think I would be most concerned that the assessor thought that the peak flow test would be an indicator of level of function with COPD because as others have said, it is only valid for asthma and that would make me question his ability and competance to conduct a true assessment of you.

Regards, Scrobbs xx

MrFlicks profile image
MrFlicks in reply to scrobbitty

80 scrobitty that is really low. How far are you able to walk if at all?

I don't think the assessor was most concerned about this it was just one of the many items on their list they do as general practice. I just wasn't sure what it meant and if 130 was bad which it seems clear is but on the same note your's is clearly far worse at 80 which must be very difficult to deal with if my own experience of breathlessness is anything to go by.

I am on oxygen and sometimes even after cleaning my nose out wiht syringes of water I don't have enough puff to dislodge any gunge that makes it very difficult to breathe through my nose and get oxygen.

I don't think it is a question of an asessors ability though as it is just something they are told they must do during the asessment.

scrobbitty profile image
scrobbitty in reply to MrFlicks

I can walk really well some days as long as it's like a snail. I refuse point blank to be totally immobilized unless I have a virus or an exacerbation. I'm not on oxygen because my SATS are very good for which I am grateful :)

Yes, the breathlessness can be quite worrying sometimes but as they said at PR, a bit of breathlessness ain't going to kill you - their words not mine and to a certain degree I agree with that.

As a side bar, have you tried the Olbas nose inhaler thing? Works wonders for me when the sinuses are poorly. :)

I do think that by the use of a peak flow meter for COPD patients, they are showing their ignorance and by that I mean the DWP since it is their format they are following but then again, I wonder how much experience a midwife can have of breathing problems (they have midwives as assessors - ridiculous in my opinion). As much as it is a tick box thing for them, like us the side details when we originally fill in the form is the difference between getting financial help or not.

MrFlicks profile image
MrFlicks

Yes scrobbitty it does seem very unfair that they can just make a list of measurements including the peak flow meter as set measures to make decisions on things by those who as you said may not be qualified in the correct field. It's quite bizarre when you think about it and very unfair. It really does make you wonder.

The whole system is not right really if you think about all the factors.

You also have to wonder if those taking the jobs worry at all that it might not be best for their own careers if they want to go back to their real vocation.

Do you have a link for that Olbas thing by any chance so I know what you mean as I am always getting a sore nose from time to time due to my oxygen and have had a very sore left nostril the past three days that is driving me potty as it happens.

scrobbitty profile image
scrobbitty in reply to MrFlicks

Link for the Olbas inhaler :- straight from the horses mouth LOL. You can get them in most supermarkets, Boots, Wilkinsons, etc. Really cheap - a couple of quid.

olbas.co.uk/products/olbas-...

There are reports of many health professionals who have resigned as assessors for ATOS because of the perceived unfairness but on balance I would suspect that would leave the less than scrupulous ones without conscious, although I wouldn't argue that all of them fall into that bracket. Whatever we think of those conducting the assessments, it is ultimately the DWP who have set the parameters so whoever takes over will be working to the same restrictions. Gulp. Hope the snozzle gets better soon! xx

MrFlicks profile image
MrFlicks in reply to scrobbitty

I have been using Otravine for that aspect scrobbitty but it's not good to use it much so will likely give that a go soon to so thanks.

I am not sure what to make of the whole ATOS thing tbh

But I think I need to have a think on this b4 saying more right now.

The whole way the system works seems troubling to me..

RE the soreness I met a guy in hospital that knew of some stuff that a person could put inside their nose to help stop the soreness caused by the Oxygen canula's but I have been unable to find what it is as know using vaseline is not supposed to be a good idea when on oxygen.

I change mine (the canula's) as Air Liquide will give fresh canula's but still can't stop the soreness happening from time to time like I have had the past 3 days but at the end of the day it is not exactly what you could call unbearable LOL.

scrobbitty profile image
scrobbitty in reply to MrFlicks

Loads of folk have recommended using KY Jelly for sore noses - I mean why only have bad lungs when you can have lots of other rotten things too eh? :D One has to joke otherwise the whole ill bit invades the soul and that's just not good, not one little bit.

MrFlicks profile image
MrFlicks in reply to scrobbitty

You're not wrong my Mrs gave me some lube yesterday thinking it was vaseline/ky jelly type stuff but I had to point out it was "Durex Play" which as you may know has some ingredients meant to stimulate so I had to use some "Proshield Plus" that I had for preventing or helping reduce bed sores that I got back in October the week I came out of Hospital after 3 months in much of which was spent on an air matress but we both had a good laugh at her mistake with the Durex Play "feel" "intimate lube" LOL :)

scrobbitty profile image
scrobbitty in reply to MrFlicks

Good job you didn't use it on the snozzle then cos I believe, allegedly, someone told me once, no really, that it would burn like ............. insert appropriate word here LOL.

The more you can laugh at the absurdities the better, it doesn't cure the poorlies but it does put it in the right box. I shall be poorly for three hours and then it can do one!

You deserve a bit of luck by the sounds of it chicken so just hold on to the fact that eventually it turns and comes out in your favour. :)

paul65 profile image
paul65

hi guys great forum first time replied to post I have copd emphysema had it now for 5 years getting worst now so have made a claim for pip I am 65 in a few weeks having read all the replies I am now so worried about the assessment that I might cancel it I know how bad it is but can I get them to see it what do they do/ask have filled in form with how it affects me daily well nearly daily some day I wake up felling good and if when I get a date for assessment if that day is a good day then what if you say I feel good today my breathing is stable you get nothing so what do you do become a actor and have people think you are a cheat any advice as to what happens and what pitfalls to look out for dreadful system have been out of work for 6 years after giving up work as I could not physically do the job and have not clamed anything for gov till now nearly finished my savings that where for retirement and now it is few weeks away and I am panicking but no one will look at the fact that I didn't claim before I am just not good at asking for help.

ps any help much appreciated .Paul

paul65 profile image
paul65 in reply to paul65

quite funny not good at asking for help then next line "Any help much appreciated" lol

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