What the article ignores is that a lot of suggestions made by the asthma death panel have been ignored (some which are really easy/simple), and it glosses over that 2/3 deaths are preventable if proper care was carried out.
Yes pollution has made asthma worse in a lot of people, and yes more and more people are being diagnosed, but generally it’s the poor management/care once diagnosed that leads to death.
It also ends up with the air of asthma being a minor issue despite the title. Kind of like ‘yes asthma kills, but it’s nothing to worry about and there’s nothing we can do to help anyway’. There is a funding problem in the NHS, there is a doctor shortage, but it doesn’t take much to make sure GPs/ED docs are more aware of how rarely textbook asthma is, and that it does frequently cause death (something I feel they don’t know). How many people have gone to a&e, been told you’re just anxious, then rapidly spiralled to resus levels when they’ve finally applied guidelines (which not everybody does)? I’ve personally had to fight to get to majors from minors due to this ‘it’s anxiety’ diagnosis... and then I was under the crit care nurse for a day or 2. Had I gone home when I was told too, who knows what state I would be in now!
A little bit more knowledge would probably go a very long way in reducing the stats, but NHS England says ‘a big part of the challenge can’t be met by the NHS alone’... erm yes it can, if the suggestions put forwards by the ADP were followed you’d probably find that 3 a day dropped to 1-2 a day.
Gah sorry. Rant over! I hate how asthma can be portrayed in the media... and this is one on the better articles about asthma!
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EmmaF91
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Emma, spot on as always! Maybe someone high up in the NHS should be made to read some of the posts in HealthUnlocked to get a better understanding?! Sadly common sense is just not common enough!
Agreed! It’s so frustrating how many misconceptions there are about asthma in the medical profession. Education around it does seem to be improving but it’s very slow and there is still a lot of incorrect information kicking around!
I think part of the issue is that it’s only at a really specialist level that there’s a decent understanding of the disease and there’s still a lot that they don’t know too. So the “asthma lite” version that filters down to non-specialists is missing a lot of important stuff
Also agreed! And some of the misunderstandings are so basic and damaging - I'm thinking here of the persistent belief that asthma must have a wheeze and the way some drs will go on that whatever you tell them, and the tendency to treat it like COPD and/or assume that if you're young and don't 'look that bad' you're fine. I have frequently been judged against the standard of a bed bound geriatric patient, because they can't seem to grasp that it is concerning when someone my age with normal mobility can't get to the bathroom without being very SOB.
Would it really kill 'them' to train staff a bit better on asthma? I get that medics can't know everything about everything, but at least to have more basic awareness that it can be serious, and know what they don't know and how to find out more.
I’ve had this on going argument with my GP about a racing heart rate hours before an asthma attack. My GP has said “we don’t know why your heart rate is high, asthma doesn’t have that effect”. I’ve heard from so many users that this is exactly what happens to them before or during an attack. Also that medics have said this isn’t caused by asthma. It’s also interesting that since my meds where switched up from Clenil 100 to Seretide 500, I’ve had no problems with a racing heart. Surely this must tell the medical profession that asthma can present its self differently to what it says in the medical books. The profession doesn’t seem to embrace the idea that we don’t know every thing about every condition.
I had the same argument with an A and E registrar earlier this week. She said my HR was due to the neb I had that morning. I said well it was about 6 hours ago now so probably any HR increase is due to asthma. 'Asthma doesn't increase your HR'.
Rather tactlessly blurted out "yes it does' and she gave me a right look (met this woman before, she knows nothing about asthma and is not the most pleasant). Amended it to 'well it does for me' but only because she was still treating me and I didn't want to annoy her too much. She has a constant air that you are annoying her and taking up her valuable time - or maybe that's just me after she recognised me and my summary (which she again refused to read).
Asthma increasing HR is not an obscure physiological effect. It is right there in the guidelines (>110 is part of a severe asthma attack), yet almost no one medical seems to know this and they will always blame it on the medication, even when I show them that it increases when I move and will often decrease once I respond to meds.
Last time I saw this Dr she was insistent it wasn't asthma and gave me magnesium IV because she thought it treated sinus tachycardia. It doesn't but did bring my HR down because it treated the asthma she said I didn't have...). This time she tried to claim I told her nothing helps me. I said nicely no, most usual things do help me, it's just an unusual presentation.
Salbutamol will bring down my heart rate too. Before my last attack I had only taken Clenil, 10 hours previously so there is no way that caused a heart rate spike. Also I had felt very poorly that day although I wasn’t able to put my finger on why. I actually spoke to an asthma uk nurse who said that an increase in heart rate is a perfectly normal symptom of an asthma attack. If Asthma uk nurses know this, why doesn’t the rest of the medical profession. I’m quite harsh on the medical profession but I still believe that modern medicine has saved my life on numerous occasions. If I had lived 150 years ago, i know I wouldn’t have lived past 5 years.
My heart races when my asthma starts before i have taken any reliever and i start to feel hot and sweaty. My asthma has totally changed recently from the last 20 years i have had it and they have no clue what is happening. I having blood test and meds for hay fever and acid reflux as they have no clue what is causing my attacks. It's pollution that is the cause.
They are saying that poor management is to blame, but in my experience, doctors have always been as helpful as they can be and try their best with a disease they still don't understand. Do not underestimate the effects pollution is having on peoples lungs. I am convinced my asthma is caused by pollution. and it stands to reason that pollution is causing climate change and killing the planet and peoples health is getting worse. It's not rocket science.
I'm glad you've had such positive experiences with healthcare for your asthma, but many people here and in the general public have had bad ones, and there are plenty of examples of poor care behind the figures (try googling Tamara Mills). Even when doctors want to help - and I agree they generally do - they cannot help properly if they haven't been properly trained and don't have the resources, or are not fully aware of the dangers of not providing good care. As EmmaF91 said, there were a number of relatively simple recommendations in the asthma deaths report which could have been implemented and were not.
Yes, there is plenty we still need to understand about asthma, but even what we do understand which is already in guidelines gets ignored too much. I agree that pollution needs to be reduced but it shouldn't be an either/or - doctors and the system need to make changes too, and not blame it all on pollution or lack of understanding.
Fair enough, but why do i have asthma or anyone for that matter and what causes it or causes it to trigger. No one knows and they can't stop it. All they can do is give me a preventer and a reliever to manage it. I have to do the rest such as super healthy diet and life style which i had anyway, but that does not even work now. I get asthma every day now and they don't know why and they don't know what to do to stop it.
When i first got asthma a doctor gave me a neutraliser, he said just in case i might need it. It saved my life i would of died no doubt. The medication they gave me i was allergic to , but they had no idea at the time and it was never proved. It was changed to a powder in the end and i started to improve. Asthma is deadly and still so very much not understood.
I’m not saying pollution doesn’t play a part in the worsening of asthma (mine worsened whilst living in the 5th most polluted town outside of London). What I am saying is that a lot of mistakes happen from medical professionals. Misdiagnosis and undertreatment in a&e, because they aren’t aware of the variety of asthma. GPs not knowing when to refer, or to up meds etc. It’s AUK/ADP that discovered that 2/3 of deaths were preventable and caused by medics not being aware/treating inappropriately. I have had some really brilliant experiences but some also truly shocking ones! It’s the bad ones which I’m concerned about and are easily preventable... if docs knew that no wheeze doesn’t mean no asthma, or know to used PB PF not the average, or that you don’t have to look bad to be bad, or to apply asthma guidelines not COPD ones it wouldn’t be as bad. As I said this is not difficult things for docs to know but an awful lot struggle with it. There is a general ‘it’s just asthma’ thought, until that ‘just asthma’ has stopped breathing and is in resus/ICU/intubated/dead.
Well there is a lot there for me I have learnt. I was at my GP. Notes Fast pulse 124 due to too much ventolin...Not true. as i had only used 4 doses. Anxiety eh well i was having trouble breathing. No wheeze...I don't always wheeze. Calm down yep I was trying. I did get put on a neb given steroids and cover antibiotics. Two days later Im in a pickle I now can't even talk. Back to the GP Straight on a neb steroids at the surgery and sent to casualty Pulse 138 straight to resus. So it looks like i need to let My GP know that Tachicardia is part of my asthma as well as no wheeze...happy days.
I'm almost bemused by this... I live in Scotland (Lothians) where GP practices are effectively back-door privatised (have been for a long time) and therefore entirely profit-centred... I was diagnosed as asthmatic 30 years ago, been on various inhalers ever since. But last December, I lost all access to a GP and to prescription medicines...
The story? For about 10 years I've been registered with a GP practice where it's all but impossible to see a doctor - they make it that way. I live 6 miles from the surgery. You cannot phone for an appointment; they simply won't give you one! - You need to turn up on the morning and join a queue that would not be out of place as a scene in a film based on one of Orwell's novels! Hit and miss of course if you'll be seen at all... this isn't something I can cope with - emotionally or physically...
Asthma reviews? Yes, you'll get called in to see someone dressed as a nurse (I doubt they are!) who will take your blood pressure, get you to blow into a peak-flow meter and fill in a tick-box form. Not sure where they 'record' this (nor what the point of this is other than to massage some stats) but it's apparently not in your notes!
So... Ten or so years of filling in an online 'repeat request form' without incident or query. My asthma has got worse over the years, but being left to 'self dose' and with no questions ever asked as to the amount of medication I was ordering, life just rolled on, and on, and on...
I got a Jury summons towards the end of last year; a previous attendance had resulted in a coughing fit (stress is a trigger) and I was sent home. So this time around I thought it best to apply for exemption... I wrote to the surgery requesting a letter...
They phoned one day - quite close to the court date saying they couldn't write me an exemption letter as the doctor hadn't seen me in years (of course they hadn't, they go out of their way to make that practically impossible!) and I 'hadn't attended asthma reviews'; which was simply untrue... I had! As I had them on the phone, would they grant be an audience with a Doctor to remedy this? No! - I'd have to join the Orwellian queues and take my chances; something I could never cope with!
I wrote to the health board and asked to be assigned to another surgery... They refused to do this it was up to ME to find a doctor! Eventually I found my way to the main NHS Scotland clerical department that deals with GP records! - They were of some help... It was them I should have been directed to by the local board in the first place - but wasn't .
Now.. You'd think that would be the problem solved... but no! All the Lothian GP practices work as cabal of quasi-NHS privatised businesses. And I'd rocked the boat! I'd been a very naughty little Prole and the GP practice I'd been newly foisted upon resented me upsetting their chums...
So, they sent me a letter saying I'd have to present myself at the surgery (7 miles away) by a certain date otherwise my assignment to that surgery would be cancelled...
Which would have been fine if the deadline hadn't been the next day and they didn't operate the same Orwellian scheme that the surgery I'd just left ran, and maybe they answered their phones every now and again! - I was over two hours trying to call them to no avail...
Back to the NHS GP services/records department... Someone there apparently spoke to the 'director of GP services' at NHS Lothian who said 'it would be in my best interests to stay registered where I was' which was, by this time, NOWHERE AT ALL! I was no longer a patient at my own surgery, and my 'new' registration' was cancelled! - Not that I could have had any confidence in either of these infantilised, mercenary 'cowboy outfits' anyway...
GP services couldn't suggest anything at this point - so there I was and here I am... a long-term chronic Asthma patient with absolutely no access to medication or medical help at all!! - And the authorities KNOW this!!!
I raised my (obvious) concerns with the Scottish Health minister at Holyrood... She had an 'NHS Official' write me a letter some weeks later extolling the virtues of NHS-Scotland, explaining how patient-oriented it all was, and enthusing about some sort of 'benefits workers' they're installing in GP surgeries....
I don't get benefits... Nothing this clown-shoed idiot was relevant to the concerns I'd raised!
I struggle to work (self employed) but I don't get any benefits or help of any kind; there seems not to be any unless you're missing a leg or something... So why the heck I'd be interested in this spiffing new scheme of theirs I do not know! I did write back, pointing out the irrelevance of this waffle and how it helped nothing... And that I was still without a doctor and still suffering from a long-term life-threatening ilness etc. etc. etc. etc...
But have heard nothing back!
And here I remain... My asthma is fairly serious, I'm almost out of Ventolin (ran out of Symbicort months ago). GP Services in Edinburgh know fine-well I'm without a GP... As does the Scottish Health Minister... As does the Director of GP Services for Lothian...
I have absolutely nowhere to turn...
A collapse is inevitable in the long term. And I can only hope I'm lucky enough to be picked up by an ambulance and hospitalised in time. But otherwise I have absolutely no way of accessing NHS services! - I can't afford the £100+ necessary to see a private GP... Struggle to get through the day etc.
EmmaF91 wrote:
"What I am saying is that a lot of mistakes happen from medical professionals. "
My personal experience is that many calling themselves that are an affront to the concept of medical professionalism... It may well be down to the practices and mentalities of one particular health board; but this is what back-door privatisation of the NHS achieves... Surgeries are run by 'practice managers' there to maximise profit, penny pinching at every turn; and mainly interested in pauchling 'tail wags the dog' statistics - even to the extent they're quite happy to lie, bully and put people's lives at risk...
Mistakes? - Mistakes are genuine errors, not the result of sharp practice...
I don't know what the situation is in England but here in Scotland, where our government makes so much hoo-haa about how much better 'our NHS' is than 'theirs'? - The system is simply not fit for purpose! - And, rather than mistakes or honest errors being made, how likely is it that the 'crisis' that made the headlines in this story is more the result of systmatic failure?
I strongly suspect I'm not the only Scotsman, Welshman, Irishman or Englishman left high and dry without access to services that should be ours of right!
I’m sorry to hear of the situation your in right now. I have no experience on NHS Scotland (being a Southerner n all 😉) but all I can say is keep an eye on things and if/when you do start to spiral seek help early from A&E and hope that they can help on the GP front... sounds like you’ve got a really shoddy CCG, but hopefully hosp docs will hold some sway for you. Not sure if you can/want too but maybe a news article about it would help in you particular situation esp as you’ve gone through the usual, legitimate methods of trying to get help/support with the situation.
I think it’s safe to say that across the board asthma care needs to improve, and that as the NHS is privatised more and more, these sort of issues may start to crop up.
Look after yourself and stay as safe as you can... it sounds bad but can you insist old surgery takes you back as it’s your nearest surgery? Cause at least then you will have access to meds, if nothing else
TBH I'd not feel able to trust either surgery... And neither is particularly close to my home (nor, for that matter is A&E). They're obviously 'out of control' as far as any kind of regulation or answerability are concerned. - And how high can you go beyond the Scottish Government Health Minister? - I'm not naive enough to believe she reads or deals with her own mail of course; but the buck does stop with her... Likewise the executive at NHS Lothian who I know HAS been made personally aware of the situation. - Obviously there is nothing unusual in patients being bullied or left to suffer chronic illness without access to medical care!!!
NHS Scotland seems to be blowing a lot of smoke and spinning a lot of mirrors; and I strongly suspect I'm not the only one stuck in this sort of trap... If that mentality prevails across the UK? Well no wonder we have headlines such as today's! And my main point would be then that this isn't so much about lack of understanding but profit-driven mismanagement! - Exactly the sort of thing that makes (for example) the American system such a nightmare!
I see this headline as an indicator of the NHS being sold off by the pound!
By strange co-incidence, since becoming 'Cast Adrift' by the NHS, I've received three or four 'flyers' (sent directly to me by post) from 'Private Health Centres' in the posh parts of Edinburgh! - Which raises another question; how did they get that data!
I think the education of clinical staff needs improving dramatically! One example was today, when i sat in a lecture about bowel disease where the nurse stated "bowel disease is an awful invisible illness, unlike an illness like asthma or a cold for example". The attitude was shocking! I am sure bowel disease is awful but to completly belittle asthma and compare it in the same category as a cold is horrendous!
I think treating the patient and not the numbers is a good place to start to. Clinicians unfortunatly have set ideas of what asthma is and refuse understand how individual it is!
It's sad that it takes so many deaths to occur, before anyone starts to question things.
It’s difficult because I think the stuff being taught about asthma to new HCPs coming through is improving (recently I had a nose through the asthma lectures being given at my medical school to the pre-clinical students now 😂 and it is starting to highlight important things, and outcomes of the asthma deaths review etc) BUT it’s not doing anything to combat the really bad misconceptions already out there. So not only do those misconceptions stay around, but they still get passed on through comments like that! 😞
Ive got to the point now where I firmly believe all respiratory issues should be taken away from GPs and local asthma nurses. Straight to a clinic or pulmonologist or specialist. That would cut the deaths in half straight away. It needs to be individualised. You can't just hand out inhalers and hope for the best. I also believe the drug companies could fix asthma if they really tried, but the profit is better with people using your drugs to help the symptoms for the rest of their lives. Cynical but hey..
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