Please don't be complacent about Swin... - Asthma Community ...

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Please don't be complacent about Swine Flu

31 Replies

I am writing this because I read some of the posts in the other discussion on Swine Flu and was a bit concerned at the lack of concern. Swine flu, in its current form, is quite a mild illness for most. However, it can be and has been fatal to some and there are no guarantees as to how it will proceed.

I find it very interesting that people see swine flu as a product of 'media hype', when actually some of the more frightening facts about swine flu are very difficult to come by (to be discussed below!). Actually, the opposite has been the case: people have been told, time and time again, NOT to worry in the face of very limited evidence that this virus is innocuous. The virus is currently following models of a predicted pandemic very closely, suggesting that it is indeed quite likely that this virus will affect 50% of the population within a relatively short space of time. What does this mean for you and me?

Many people believe that the swine flu pandemic is no more prevalent than seasonal flu e.g. the 'thousands die from seasonal flu every year and only a few have died from swine flu'. Actually, if you read the DoH documents, the concern was never that swine flu would be more deadly in the first wave.. just that, because of low community immunity to a new virus, more people would get it. And if more people got it, the thinking went, more people would be likely to become poorly and die from it working on the premise that a certain number of people always become poorly and die from any flu that happens to be going around. That really shouldn't be a source of comfort to anyone. Also, as of last week, seasonal flu numbers have been overshot by Swine Flu. In pandemics, it would be expected that a virulent pandemic virus would also 'overtake' seasonal flu in flu season - again, increasing the numbers affected because of the lack of community or 'herd' immunity.

It must be remembered that in comparing the two, awine flu differs from seasonal flu in a number of important ways. It affects a different age range of people, for a start. Almost most half of the people who have died from it internationally did not have the famous 'underlying health conditions' either. Normal seasonal flu binds (sticks to/lives in) the nasal passages. Swine flu binds further down the respiratory tract, and often deep in the bronchioles. This is not good news for asthmatics. This 'binding' in the lungs can lead to sudden onset of a viral pneumonia which is, like all viral pneumonia, very difficult to treat. In the second and deadliest wave of the 1918 Spanish influenza, there were reports of people dying from this pneumonia within 45 minutes! People argue that 'there were no drugs' then, but actually, there are no drugs now that can deal with that type of illness. Again, not good news - not for asthmatics, not for anyone else.

In terms of Tamiflu.. well, sorry to tell you, but it does very little, actually. Antivirals can lessen the course of an illness by one day and can guard against some complications, but their role is primarily prophylactic (e.g. to stop you getting the flu in the first place, following contact). If you don't treat within 48 hours of first symptoms, quite frankly, you could be taking smarties.

Another frightening fact is that it is estimated from research recently done that as few as 15% of NHS workers will come to work in the event of the flu becoming epidemic. That has implications for any of us prone to serious asthma attacks whether or not we get the flu. Flu will 'take over' and put serious pressure on all NHS services, and you may find your 'treatment' being given out by admin workers from office bases whose training for the role has been a day or two in the run up to crisis mode being implemented in the NHS.

People's complacency is driven by half-facts. I hear people say things like 'Oh, remember SARS? What became of that?'. Nothing.. because adequate social distancing measures were taken which thankfully quashed the bug. SARS died out rapidly BECAUSE it was taken seriously.. BECAUSE of people's fears. Unfortunately, swine flu has not been afforded that kind of respect precisely because the people it has affected in the UK are are seen as 'only' people with underlying health conditions. ""Oh, it's okay, it only affects people with underlying health conditions"".

Truthfully, the risk is quite, quite small BUT it would be a good degree smaller if people were following the recommended infection control advice (catch it, bin it, kill it). Most people aren't following this advice, as they listen to the government and the media and our Chief Medical Officer urge us not to panic.

HOWEVER, in NOT panicking, we don't seem to follow basic advice we've been given. Do you carry alcohol gel with you? Do you wash your hands properly, following the 6-step handwashing technique? Do you wash your hands with soap and water once an hour? Do you clean handles etc on your doors etc? Do you know the signs and symptoms of swine flu, and have a thermometer in your house so you can act when your temperature rises? Do you have paracetamol in your house to self-medicate? Do you have two flu friends to pick up your prescriptions if you become ill? Is your asthma plan up to date? Will you avoid the doctor if and when you get ill, if you are not having serious difficulties? How will you alert someone if you are having difficulties so that you don't infect others?

Don't ignore this. Keep calm, carry on BY ALL MEANS but let's not kid ourselves that this is NO threat. If we all followed the advice, maybe it would be less of one. Instead, people laugh and scoff at the 'media hype' which actually, proves to be very little at all. Don't risk your life and your health over somethng as simple as keeping your hands clean. Please.

And spare a thought for those of us in multiple risk categories. I don't want your germs either.

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31 Replies

My son is on tamiflu as he has auto immune disorders and a class mate has swine flu. I am in the RBH where the Dr's are certainly not being complacent, last I heard on Friday it would be safe for me to go home. No-one is complacent but your post is scare mongouring amoungst a group of people who are all to aware how dangerous swine flu can be.

Also they are not that far from a vacination.

I am shocked and appalled by your post.

Scaremongering is a more virulent virus than swine flu itself.

Panic achieves nothing other than to spread panic. If you are up to date, you will know that, as Bex says, plans are currently underway to vaccinate the whole UK population beginning with those of us in high risk groups.

Rather than 'please don't be complacent', please don't cause unnecessary anxiety to people who are already at times battling with sometimes difficult medical conditions.

yaf_user681_34383 profile image
yaf_user681_34383

Alot of places aren't even testing people for swine flu anymore just treating them, so the true numbers affected is missleading, as a blood test is needed to establish the diagnosis.

Also the last time i was at work which was a while ago now 2 yrs there were very good plans in place for anykind of flu pandemic, the nhs has been ready for years. Each trust has a list of staff and their individual skills,office staff will not be looking after patients. The trust where i worked had a list of all staff skills. In the eveny of a flu pandemic people may be re-deployed elsewhere to areas which are most in need ie I may have gone to icu as i worked on picu for a while. NHS staff are ready and have been for a while.

Yes take swine flu seriously (am sure most are) but don't uneccesarily scare people.

I think that everyone on here knows how to take things like this seriously, don't think anyone is complacent.

I agree with sadwheezer, the NHS trust that I work for also has a 'flu pandemic' plan in place where evryone in the trust has had to fill in a sheet of paper listing everything from their specialist skills to how long it would take them to get into work etc etc.

I have been in contact with people who have had close contact with people who have swine flu or who have been suspected of having it, and I am yes of course worried in case I get it, or it makes me really ill because I have brittle asthma, but I know that the first signs of me being ill I will go and get something done about it, ie.. speak to my GP or asthma nurse and ask for advice etc. I think everyone on here is sensible enough to understand the complications of it and when seek advice.

I don't think other people should be scaring others with things like this, it is already widely broadcast in the media.

KateMoss profile image
KateMoss

You seem to be the one scare mongering!

Of course we are taking it seriously! A lot of us here have severe / brittle / difficult to managed asthma, have home nebs, O2, s/c infusions.

We are not being complacent! Yes, I carry gel with me all the time anyway, for public loos mainly!

I am fully aware of what flu can do to someone who has severe asthma and on steroids. Alot of us here have multiple problems too along side the asthma.

I am following advice but it is not ruling my life!

Worry not the NHS has issued all staff with a small packet of tissues, a small bottle of hand gel and a mask. Some surgeries have been sent too many though and some not enough, the masks are non adjustable too so if you have a small face they are ill fitting and therefore afford little protection lol.

However i am not worried, what will be, will be and worrying about it or responding negatively to scaremongering won't change anything. Take good care everyone and if you get symptoms of swine flu ring your GP, Lois

Interesting reaction here..

As I mentioned, I posted this because I am sick to the back teeth of people acting as if this is not a threat. I am not only a brittle asthmatic, but diabetic and 22 weeks pregnant. So I am not 'scaremongering' people 'with serious conditions', I am someone with a serious condition who is particularly anxious and concerned at this time, something which is not helped by the general 'what will be, will be' attitude of a whole lot of people.

I am finding it particularly difficult that everyone laughs this off, or dismisses the concerns of those who are - like me - very, very frightened by the facts of this situation. If you want to know why I posted, read the other post on swine flu - it is quite clear that a lot of ignorance abounds about this virus and how serious it might prove to be.

There is undoubtedly complacency about this virus in the general population. That complacency is a danger to each and every one of us who is at risk. So the general, prevailing attitude terrifies me. You may be appalled by my fear, so be it, but don't be so self-righteous as to assume I don't have a right to my fears or to air them on a discussion board of an organisation that purports to serve my interests.

It's nice that you are all being so exclusive.

You are 'a group of people' who are not complacent? Read what has been written in the other post about swine flu. Ignorance still abounds.

I am not only a brittle asthmatic, I am diabetic and 22 weeks pregnant. I am in an occupation where I am exposed to the public and I am a public transport user. As such, I 'scare monger' because I am scared. The people who have posted in response are not the only people who have serious conditions so it is not justified to assume that I do not have similar serious conditions.

I am very upset at what I perceive to potentially be a tone of self-righteousness implied in statements e.g. that people are 'appalled' by my post, which really is just my fear and my anxiety. I felt that has been an element of posters looking down your noses at me because I am genuinely concerned that this threat is not being well-publicised to the extent where those members of the public who don't care about swine flu because they don't have an 'underlying health condition' do not follow basic precautions to keep us all safe. It is fantastic that there are so many people who are 'above' fear, but I am not. Perhaps it is because I am pregnant and need to think beyond myself this time.. perhaps it is because my midwife and my consultant have had nothing to say and were unaware e.g. of an impending vaccine.. perhaps it is because my occupational health department (in the health sector) have no advice to offer other than 'continue to come to work until you have symptoms' (when surely it will be too late??) or perhaps it is because I have researched this exhaustively and I am deeply concerned.

For every person out there who does not ignore the advice (e.g. those who are so lucky to be as supremely well-educated and well-informed as your good selves) there will be many more who will sneeze in your face and put you at risk. Fair enough if you are not bothered by that, fair enough. I would have expected people on here to know what was what but I was bothered by what I read in the other post which suggested otherwise. Hence my post.

Also, the sad fact is you can wash your hands all you want but while the general public doesn't bother to cover its sneezes, you are protecting them from your germs and not you from theirs (read European CDC info on evidence in relation to stopping swine flu - very little evidence of much transmission via hard surfaces)

References you may wish to pursue if you are concerned:

nhsblogdoc.blogspot.com/

newscientist.com/search?doS...

PS: definition for scaremongering:

scaremonger - Someone who spreads worrying rumours or needlessly alarms people; To spread worrying rumours

All of that implies that what I said isn't true. Rumour implies lies. There was also the strong implication that someone came on here to 'scare the poor asthmatics', which suggests to me you all spend lots of time on here and assume that anyone who comes to the board isn't a 'real' asthmatic and is coming with the intention of scaremongering. It would be nice if you checked this out before setting up a 'them' vs 'us' response that assumed I was not in the same situation as most of you.

I did not feel that you gave me your time, respect or consideration re: my concerns, my fears and the hours I have spent trying to find out about this and fretting at the lack of information in the media. It has been a deeply upsetting experience to post on here and get such a strong, negative reaction. I cannot understand why nobody is genuinely deeply concerned about this, or why nobody questions how it is being handled by the government, the media or the NHS.

Let's just hope that my concerns are in fact 'needless'.

Fiona, I think you will find ""flaming"" is not allowed on this site.

yaf_user681_34383 profile image
yaf_user681_34383

Sorry if I upset you it wasn't intended.

Flaming is defined a hostile and insulting interaction between Internet users. I certainly felt that some responses to my post came under this category so I am pleased to hear that 'flaming' is not allowed, Bex.

I apologise if it came across as though I was 'trying to scare' initially, and at my own hostile reactions to the posts I had in response but I was very shocked and insulted and upset (to the point of wanting to cry) by some of the reactions so I responded accordingly. I have edited some of these posts now that I am feeling slightly less upset.

Thanks very much for your sincere reply, sadwheezer.

I am absolutely terrified by this virus. Absolutely terrified. As I said, it may be because I am pregnant, and I am very, very concerned that I will lose my baby (which actually has been far more upsetting to me than previous occasions when I have been very unwell, which I am sure mothers on this site will appreciate). This is something very serious and it upset and angered me to be dismissed so liberally. I would rather have been ignored than dismissed. I am sure we have all been in situations where asthma is not taken very seriously even when it is clearly a major threat to our health and wellbeing - sometimes even by medical professionals. My concern when I read the swine flu post was that people were not very well informed and potentially at risk. So I posted.. not to scare, but to inform.

I genuinely worry that this is being underplayed vs overplayed in the media. Maybe I am wrong but it doesn't seem to occupy a lot of space in the headlines and there does seem to be a sense that it's 'okay' as long as people who die are those in risk categories. I don't find this very comforting at present. I am also not very comforted by some of the pandemic plans, as when I approached front-line professionals, they were very unaware of the pandemic plans. My obstetric consultant didn't know if the vaccine was suitable for asthmatics or pregnant women. My midwife didn't think swine flu affected pregnant women any more than other people. My GP thought that it was very mild for asthmatics and only affected people with COPD. It seems that the NHS 'preparedness' relates to a lot of people in boardrooms and a lot of admin staff being trained to hand out antivirals with needless layers of bureaucracy.. some of the information on NHS choices doesn't even match current evidence. I am not reassured that I would not be seen by a GP but just given a voucher if my symptoms 'sounded' like swine flu. I have written to the HPA, the DoH, the HSE, my MP and have had much contradictory advice in response which makes me think that just trusting is not enough. I want to know everything I can in case I come across someone who doesn't know what they're doing..

So it's not about panic from my point of view, it's about being REALLY informed - not just believing what's piped out in soundbytes on the media (who I don't trust as far as I can throw on this)

fiona,

congratulations on your pregnancy, but you are worrying about a virus that has only mild symptoms in the majority of cases, and OK the underlying health issues are to be considered, but then their are all the rest with asthma, thyroid, cancer etc whom all should be concerned, but I don't really know anyone who is as worried as you are, the fact that you are pregnant means you are concerned for your child and I can understand that, but you with the health issues and the pregnancy will get the medical attention probably more so than 'joe public'. Yes there are no drugs at present to control the virus, but that is being worked on and soon to be available.

Then again the possibility of a new virus over the winter is something that could happen, what then. Something as simple as the common cold can have a serious impact on those with stressed immune systems. The information through the post, and the TV adds did make the point, but it's not news anymore, and until the second wave comes later it will stay that way, but the vaccine will be available at that stage.

The worry of something that may not happen is likely to cause your asthma to become unstable, and problems for your pregnancy. If your really concerned about the virus then by all means keep washing your hands etc, but it's air-borne and people do have to breath, so if your in a confined space there isn't much you can do to prevent it's spread, and the same is true for the common cold.

I think that you will find people here will be well informed and have the sense not to beleive media soundbites. I am mother of 4 children one of whom has a progressive auto-immune disorder I love them dearly and would do anything to ensure I am around for a good many years yet, I have given up a great deal already. However, I can not and will not let fear rule my life, I am not going to live in a bubble. I was given life to live, people have saved my life so I might live. I will not hole myself up for the duration of swine flu I will take sensible precautions and I will trust my asthma team who would never ever expose me to undue risk quite opposite they constantly er on the side of caution.

I think perhaps you need to respect that we are adults and are able to make our own choices I have yet to see anyone who is complacent and some of your facts regarding tamiflu are presented in such a way as to make it seem it is not effective, this is untrue. I am sorry you are clearly living in a great deal of fear, I would urge you to talk to your consultant or GP about how you can practically avoid putting yourself at risk.

Bex

Fiona - I would hate for someone to feel that i am being complacent about this illness, i carry hand gel, tissues and follow the rules etc as do all my 3 kids. I know of 2 friends who also have complicated medical histories and are pregnant and neither seem to be getting as paranoid as yourself- yes they are worried but they certainly aren't doing all the 'research' as you are. I was in hospital on a resp ward when the swine flu first emerged in the UK back in April and as i am almost part of the furniture the ward sister invited me into one of the staff training sessions so i would be fairly confident in saying that i know what to and not to worry about eg masks - these are pointless if you are trying to avoid catching it but useful in containing spread by the ill people wearing one but they need to be replaced every 24 hrs max.

I have 3 kids but i have also lost 3 babies so i can understand your added fear but im afraid i really do think that you are probably making yourself extra stressed by spending too much time looking it all up.

Im sorry but I also feel your attack on both Bex and ratty was uncalled for as both have had more than their fair share of health problems but certainly dont go on about it. There are many of us here with very complicated medical histories(myself included) and many of us here have either had very close calls with death and/or have lost a friend or family member to asthma and would certainly prefer not to have these problems so please think a bit more before you post.

On a more positive note i hope you do avoid the flu and that you pregnancy progresses smoothly.

With due respect hopalong, you don't know my history any more than I know yours. As my name is not exactly confidential (which means I am ruing ever posting here), I am not going to go into the more distressing aspects of my own family history.. but it is highly unfair, and exclusive, to assume that I wouldn't understand the suffering that can be brought by asthma. People choose to deal with their feelings about long term conditions in different ways. I am very academic and to my mind, the best ammunition is lots and lots of information. I appreciate that for other people this may be overloading - but then, as someone pointed out, we are adults and we can choose to 'switch off' if a certain type of information is personally distressing to us. My comments about Ratty and Bex (which, as I explained below, I removed when I had calmed down a little) were because I felt upset that there was this apparent suggestion that I shouldn't be 'causing anxiety' to people with complex medical histories, as if this was something I was not 'qualified' to comment on. I sense this in your post too.. you are obviously a good and loyal friend, and that's great, but it isn't actually reasonable to expect all comers to this site to investigate the backstory of all users. I am not a regular forum user but that really doesn't mean any user of this forum can assume that they understand my various illnesses (of which asthma is really only a small part in my case, but perhaps more worrisome to me at present) - surely you can see that my comments about Ratty and Bex were because I couldn't understand the assumption being made that 'my story' was less serious etc than theirs when neither poster had ANY information about me?

I appreciate that my anxiety may be a bit out of control and that made me react in anger to comments that I found dismissive, hurtful and 'flaming' ('scaremongering' is a really strong word, people, and it implies something malicious and unkind on my part, which was really unfair). I appreciate that comments about my anxiety are fair. And I thank you, worrysom, for making helpful suggestions to me about how I can manage that. I am considering hypnosis. Some people have told me that it is common to be more anxious in pregnancy, especially when there have been previous complications, and I guess I am fairly anxious anyway, but I appreciate your thoughtful comments.

In the same way that some of you found my comments anxiety-provoking, I find the dismissal of my concerns anxiety-provoking. I really have been very concerned by the lack of responsiveness from my own occupational health team, my own medical professional team etc and it is this dismissal that causes me the greatest concern of all. If it was straight down the line e.g. 'okay, there's a 10% chance that this could kill you but here's what you can do to say safe and here's exactly what will happen in the event that you do become ill', I feel more comforted than when I hear something generic like 'oh, we're well prepared' or 'it's probably nothing to worry about it'. That's just me. I appreciate other people feel differently but it isn't really fair or okay to say that my way of coping or sharing information is 'wrong' and attack me for it.

So you say I should think before posting.. I would say perhaps I should, but I'm not the only one.

I'm not really sure what the purpose of this 'discussion forum' is. It certainly doesn't seem to be discussion. Tomorrow I will remove these posts.. I actually just wanted to talk about this, not be told that a) I am over anxious; b) that I shouldn't let out my anxiety in front of others in case it makes them anxious when they've been through a lot though they 'don't go on about it' (unlike me, of course???) or c) that I am a 'scaremongerer'. I particularly find it hard to hear that no-one else is as anxious as me, as if I am some sort of freak. I feel very upset and very low that I have had such a crazy reaction to a post that initially, I (stupidly) assumed was supposed to be informative and a platform for 'discussion'. I also can't believe I have allowed an internet forum make me CRY. That has NEVER happened before.

Cold Light of Day...

Its a bit early for me to be posting, I have re-read the whole discussion. Fiona I don't think the moderators will remove this thread if nothing else it serves to show that swine flu has affected people in many different ways. Some of us choose to try to not let it, and the fear of it rule our lives others are clearly very frightened and ""doing their homework"" but please don't beleive all you read on the web! A very dear friend did not have the flu vaccine caught the flu and after many weeks of intubation is still recovering now I am all too well aware of the dangers of any flu virus. The thread and its effect on people was clearly playing on my mind as I had some very wierd and not so wonderful dreams last night. And as I am awake at this ungodly hour doing my IV's I thought I should add that a little flaming aside at least many things have been brought into the open and Fiona, at least you have brought out more in depth debate.

However you choose tackle this outbreak I hope everyone here gets through and stays well until a vaccine is available.

Bex

Modding Message

Oh dear. I think I'll have to wave a time-out flag here. No more mud-slinging please.

Some facts about Swine 'Flu:

- it's a pandemic. This is because of the *number* of cases worldwide, and has nothing to do with the severity of the illness. Pandemic 'flu, by definition, always affects different age groups and is expected (note I say *expected*, because at the moment we're still in the very early days) to cause more deaths than seasonal 'flu.

- it is likely to cause huge strain on the NHS. However there is a huge amount of work going on to ameliorate this, from workforce planning to the suspension of routine workloads *should this become necessary*. There is no way that clinical care will be given by admin staff - to suggest so is incorrect.

- viral pneumonia is indeed more difficult to treat, but thankfully medical care has come an awfully long way since 1918! We have antivirals which are the most effective if taken within 48 hours of the onset of the illness, but to say that it would be like taking smarties after that is incorrect. Particularly in more severe viral illnesses they can help to reduce the severity of the illness even if started later. Putting aside antivirals, general medical care in terms of physiological support - including ventilatory support and other vital organ support, both mechanical and drugs - is way ahead of anything 1918 could offer.

- if it follows previous pandemic patterns, we are likely to see a ""second wave"" later in the year. By which time the vaccine should be available and the programme already commenced.

- there was a huge amount of concern when Swine 'flu arrived in the UK because of the high death rate in Mexico. In the weeks following the UK spread, though, it became very clear that it was not going to cause the huge mortality that had occurred in Mexico, and that the illness was significantly milder than previously thought.

Unfortunately there is an awful lot of media ""hype"" surrounding this virus. As Dr Crippen says in his NHS Blog Doctor post that Fiona refers to, ""If this outbreak had been caused by a virus called the “really rather dull and boring” virus we might have heard little of it."" There are so many different illnesses that can cause severe illness and death in people with compromised immune systems - or even in those who aren't compromised. Athletes are advised to refrain from training if they have a cold, in case they develop viral myocarditis, for example. Unfortunately this has been portrayed by the media to be some kind of terrible mysterious deadly plague, but we need to get more context on it than that.

YES, Catch it, Bin it, Kill it and YES, take reasonable precautions, and YES, be prepared. But DON'T panic or worry yourselves silly, or live in fear, because that will not help.

CathBear

Moderator, front-line GP and asthmatic.

Hello again

Okay, no mud-slinging! :) Thanks for your comments Bex.

In a strange twist of fortune, I went to work today to be told there has been an outbreak of 'swine flu' in the school I am working in. I had to laugh.. fingers crossed..

I appreciate the commonsense advice given by Cathbear, but I remain reservedly concerned about current NHS plans. I'm not prepared to comment on where my reservations stem from due to the fact that my username is not confidential enough. However, to highlight my point about non-clinical staff providing clinical advice, I spoke to a receptionist at my GP surgery today about the fact that I now know that I have been in close and sustained contact with someone who is presumed to have been exposed to swine flu in a family member in the last three days, advising of my various risk factors etc. She told me that the advice was to continue to go to work until I was symptomatic. This may be 100% true, but I would have been much more comfortable hearing this advice from a GP or nurse practitioner. I wasn't really asked any questions about my own health etc.. Is this okay? Isn't the person infectious for 12 hours before symptoms show, and shouldn't Tamiflu be given in the first 6 - 48 hours? I'm not saying that I should have been given Tamiflu but I do feel the quality of advice could be a bit better, e.g. if you ring NHS direct and are directed to a pre-recorded line, it would be helpful to have a button for specific groups e.g. if you are in a high risk group, hit 6. This could outline what steps people in these groups need to take e.g. it seems unclear to me as to what I should do if I do become symptomatic and say, have trouble breathing? Get the antivirals - check. Self-medicate according to my care plan? Maybe? Go to hospital when it says so on my care plan? What about infecting others etc? Aside from my asthma, do I need to act differently because I am pregnant e.g. if I did get symptoms, I guess I would need to take a lot of care about dehydration/temporising - is there any advice out there on this?

So, although (weirdly!) I feel a lot calmer today, I still have concerns about the quality of information that is getting through to those of us in 'at risk' groups despite the worrying lack of information about the outcomes for people in 'at risk' groups. When I wrote to the DoH and HPA I asked if it would be possible to have information that would really reassure - e.g. figures of people in risk groups who actually present with very mild symptoms. The HPA said it had no plans to release that information. Today, I found a figure somewhere that said that of 20 women who were pregnant, 4 were hospitalised and one died. I like that figure - it makes me feel better, because I was beginning to wonder if anyone who was pregnant could survive. The CDC in the States seems to offer this level of information and frankly, I think it's a lot more trustworthy than soundbyte information like 'people with asthma are no more likely to catch swine flu than anyone else' - is there evidence that this is true? Or is this based on seasonal flu? What's the research underpinning this assertion?

You see my issue, Cathbear? I just want quality information rather than generic stuff thrown out as fact when it based on probability and supposition in relaiton to a novel virus that not a lot is known about. I want to trust what I hear. I want my questions to be answered with cold, rational facts so that I don't worry myself into a tizzy. The lack of hard information is what makes me worry. I have been schooled to think in an 'evidence based' way and I don't see the evidence to back up some statements I read.

I received an email from my Occupational Health today saying that all workers would be expected to take up the vaccine when it was ready and they would then be expected to be moved to care for those with flu. Is there evidence that the vaccine is going to be safe for a) pregnant women or b) asthmatics? Where is this vaccine? Is the vaccine even ready? What kind of clinical trials has it been through? Isn't it being fast-tracked? I've been told that I could be subject to disciplinary action if I don't take it.. is this fair? Why did one GP tell a friend from antenatal care that the vaccine could never be given to pregnant women as they can't have live vaccines, while another told someone else that Tamiflu would 'cure' the flu? It is difficult to trust contradictory information.

I am not asking these questions to 'scaremonger' but because I think I need to know the answer to these questions - and a lot, lot more - to assuage my own anxiety. Information is power! I think people in all at-risk groups deserve proper, solid information on which to base their planning and preparation for any potential threat. I know that there is a crisis flu team in my PCT meeting round-the-clock daily emergency planning etc that has access to this information and more, but the culture seems to be that people are better off without information - I don't know if this is to prevent panic or because they think that we should believe everything that is said at face value. I do know that many front-line practitioners are not accessing this information either! Patients deserve proper, considered information - especially those in high risk situations - surely this should be a given in a 'patient-led NHS'?

Fiona, some advice on Pregnancy and Swine Flu has been put up on the HPA website. The NHS has purchased Relenza for expectant mums to use rather than Tamiflu. Try not to worry - it is early days so more time is probably needed for statistics.

Full section is at tinyurl.com/moloqs

(hpa.org.uk/web/HPAweb&HPAwe...

Excerpt pasted below:

""What do I have to do?

It is important that any woman who is pregnant and has the symptoms of a flu-like illness (headache, cough, sore throat and fever) should get advice from NHS Direct or their doctor as soon as possible. Woman who are diagnosed with any type of flu may require close monitoring.

Complications from flu can be serious for anyone and should they develop it is important that they are picked up quickly so that treatment can be given straight away.

If after assessing a woman's condition it is felt that flu is present and causing a problem then an antiviral may be offered. Relenza (zanamivir) is an antiviral that is inhaled into the lungs. This means that very little of it gets into the blood stream therefore this drug is recommended by the Department of Health for use in pregnant women rather than Tamiflu (oseltamivir).

The Department of Health has purchased Relenza (zanamivir), an inhaled antiviral drug that treats flu without reaching the developing fetus.

Quite possibly a lot of the kind of the information you are after at the moment is simply not available or not known - as you say, it's such early days that even the people studying it are still learning about the virus and are feeling their way.

Regarding you being given the advice you were given by the receptionist, this is simply not acceptable practice. I know that in some places receptionists seem ""allowed"" to give advice to patients (or try to whether they are or not!) but this is just not on. This is not in relation to Swine 'flu but to any medical matter - I have heard plenty of tales (and there will be some written about in threads on these boards) where people have been blocked from speaking or seeing a doctor. In our surgery receptionists are absolutely not allowed to give any form of clinical judgement or advice - if a patient says they need to see or speak to a doctor, or says it is an emergency, then they are put through/given an appointment, no further questions asked (other than basic triage details to pass to the doctor, for example, for when we call them back). At present we have a separate list for 'flu related enquiries which are all receiving telephone triage and advice. It's simply not fair or safe for patients to be dealt with by reception staff - as you say, you may have a million and one questions that cannot be answered by a non-medical person.

At present, the action plan is NOT to treat contacts of Swine 'flu unless there are severe underlying health problems, or unless they are household contacts in high-risk groups. I do agree, however, that a blanket standard answer given by a receptionist with no questions about your general health/history is not acceptable (see above ;))

I can completely appreciate your desire for the cold facts - like yourself, if I'm told something, I like to see the ""figures behind the words"" rather than just accepting the top line or the conclusions. Critical reading of scientific papers often teaches us that the conclusions that the authors draw - or the headlines the papers write - can be completely misleading or irrelevant.

Regarding the vaccine, it is still in production - until the pandemic occurred, the exact virus causing it would always be unknown and hence it would be impossible to produce a vaccine to counter it. I understand the vaccine is being fast-tracked and is likely to be similar in terms of production and excipients to the seasonal 'flu vaccine, so safety should not necessarily be an issue. However, I don't have the full information to be able to answer beyond that. Regarding the information given to your friends, though, it's just plain wrong - the 'flu vaccine is not a live vaccine, and as we know Tamiflu serves to reduce the severity and duration of illness rather than truely effect a cure.

Giving information is a constant balance between informing and causing harm by worrying. However, I do agree with you that the best person the determine the information they are given should be the patient themselves.

Right to be scared

Fiona:

I am sorry that you are living in fear of H1N1, but I agree with you that your fears are well founded. Unfortunately, sometimes you can only protect yourself so much and hope for the best, I'm afraid.

Here in Barbados you cannot get Tamiflu as the government has commandeered all available antivirals back in April, on the day that I was due to pick up a dose of it for private use in case of emergency. Rotten luck for me. And there is no fear of it here as no one is being diagnosed with it, and the government is stockpiling and holding onto it. Funny that. So swine flu is being treated as regular flu here, there is no hype.

I have just been diagnosed with asthma last month after a bout of flu (hummmmm) and I am a long distance runner. I have only now started back running and have to deal with asthma attacks that seem to be triggered by my soapmaking, which is how I earn my living. Yikes. That aside, I now have to worry about my new asthma and now H1N1. What a scary feeling. I got sick so quickly at the beginning of June, and even ran a 10km race on June 20th whilst having chest tightness and shallow breathing, not realizing that I was dealing with asthma. I got much sicker after the race and spent almost 2 weeks in bed every afternoon as I couldn't control the severe exhaustion and feeling terrible. I'm now on the mend but still not as strong as I was just 5 weeks ago. I am so scared of getting swine flu now that i have seen how quickly I have been felled by a simple flu. Does anyone else feel this way due to their asthma?

I agree there should be some concern. It does seem to be the case that this strain of H1N1 (Swine flu is something of a misnomer) can do more damage to the respiratory system than regular seasonal flu - I think we should be aware of that and do what we can to avoid getting this disease until a vaccine is available.

news.bbc.co.uk/1/hi/england...

this tinyurl.com/mlvrbp report suggests that the virus may be more serious than first thought, but does conclude with the statement that modern antivirals are effective, and the vaccine in production should be sufficient, so be sensible is probably the best advice, and don't worry.

Well, thanks to cathbear's message, I phoned the GP and asked for a telephone consultation today as I felt this might assuage my fears a bit. In some ways it did - my GP is a very rational man! - and in some ways it didn't.

GP's points were as follows: many people currently being diagnosed with 'swine flu' or having 'confirmed' swine flu, actually have no such thing. Very few people are being seen by GP now so if they ring and advise of cold/flu symptoms they may be prescribed antivirals with no real proof that they have anything more than allergies or a Summer cold. GP said that he felt that the government had 'stockpiled antivirals for nothing in most cases', as most people recover very quickly and with no real side effects. He said this would be most likely true even given my risk factors etc.

However, he also advised against (!!) getting the antivirals if I did become ill because the side-effects in pregnancy are not well known etc..

And so, what am I supposed to believe now? GP was quite strongly against antivirals (which I KNOW is against current recommendations) and absolutely against vaccination (which I feel more mixed about). Needless to say, the GP wasn't actually looking at my record when we had this little discussion, just having a quick chat with another swine-flu obsessed patient that I'm sure he's sick of having to advise.

I have come to appreciate over the last few days that actually, very little is known about this virus.. and so a lot of what the majority of people - even front-line practitioners - say, is based on gut instinct or supposition etc, and not on those cold, hard facts I would dearly love to lay my hands on. As such, it's a bit subjective.. and a bit varibale. I think I just have to accept this but it does worry me, because I feel that inconsistent responses from medical professionals will be likely to cause difficulties to vulnerable patients e.g. being turned away. (I once collapsed in a high street because a receptionist refused to let me see the doctor when I was attacking, and ended up in a very grave situation indeed..).

Even today, my Occupational Health nurse advised me to put up notices re: Swine Flu in the clinics I work in (there are none, right now) and my manager said that it has to be cleared 'through the Board' which doesn't have a current policy on what information to disseminate in community e.g. on notices etc. The Hospital Trust is doing much better with clear, printed information to LEAVE the wards if suffering cold/flu like symptoms. It angers me that there are daily board meetings on emergency planning/flu preparedness and yet something as simple as putting up a poster advising people NOT to attend their (non-essential) appointments in community healthcare has not been decided on, or advised on, at a national level. I know we've moved to 'treatment' phase, but surely a bit of containment is still advisable?

I don't know. I am exasperated by it all! I think I have pushed for as much information as I am likely to get, and I am just keeping my fingers crossed that this is being handled well, and handled effectively, and I don't find out otherwise as the situation progressed.

I don't post here much anymore but I wanted to reply to this.

I don't have asthma, I suffer from end stage interstitial lung disease. Am I worried that I may catch swine flu? No, I'm not, it's not that I don't think it should be taken seriously it's just I don't live my life wrapped up in cotton wool, I never have and I never will. I heard from elsewhere that the NHS have ordered 32 million face masks, knowing full well that standard face masks aren't even fully affective at protecting you from the virus. Will I be wearing one? Absolutely not. The vaccine should be available from August I've heard, I'll get that like I do my usual flu jab. If I catch swine flu, wrong place, wrong time I'll either get through it or I won't, like everything else I catch.

Tks

The area i live in has sent out information packs on Swine Flu to all the people who are registed with the NHS who have long term conditions. So information has been sent out in my area (west Yorkshire) to all people with long term conditions telling them all about swine flu and what to watch for and what to do and what not to do and i personally feel very informed. And i know what to do if i get ill but meanwhile i am just continuiong with managing my long term conditions (yes multiple).

plumie

That sounds pretty good plumie! There's that old postcode lottery at work again though.. I am in your region (work in one Trust, live in another) and I know neither of the Trusts I know of have done this so hats off to yours - they've been v organised!

I am not complacent about Swine Flu, but neither am I worried about catching it, used to have the normal flu vaccine every autumn, and was once unfortunate having had the flu vaccine that season to catch a dose of flu that obviously wasn't the one I had been vaccinated against. The flu, aggravated the Asthma and I came near to having a stay in the local ICU. These days I don't bother with the normal flu vaccine every autumn, and I have never had flu since. Why? Well probably because I wash my hands regularly, if I don't have access to water use hand gel cleansers, and keep away from people I know who have nasty viruses. This doesn't totally protect me, I still pick up the odd virus or bug, but I am sure I would be worse if I didn't cleanse my hands regularly.

This morning a neighbour informs me her partner has ""Swine Flu,"" the GP has prescribed him medication, yet I saw him walking down the street this morning, okay he looked unwell, either his GP was being overly cautious or Swine Flu isn't as bad as the media is hyping it up to be.

Personally I am going to use my own common sense, and not let the media hype bother me. Swine Flu is in Herefordshire, but apart from the original government leaflets that were sent out a few months ago, a bit in the local papers from our own health authority, I haven't been personally contacted and advised to do anything else. So life as normal for me!

GOOD NEWS DOESN'T SELL PAPERS, BUT PEOPLE WILL ALWAYS READ THE NEGATIVE, AND GET DRAWN INTO THE HYPE!

Don't forget everyone, it wasn't so long ago that Turkeys were slaughtered because they had Bird Flu, they were originally destinated for Bernard Matthews Turkey Products. And as far as I know Bernard Matthews is still a successful business and the great British public are buying his products and feeding their families with it!

I haven't read the rest of this because i got to the middle and decided don't have the energy so not sure how relevant this post is

My kids and I have been ill since Friday High temps/flu like symptoms. I have been offered tamiflu (if thats the name) by Gp but have refused it due to allergy risks ( I have anaphylaxis to various drugs) We are now all on antibiotics due to chest problems as everyone is asthmatic.

Don't be complacent but don't stress out either. We feel no worse than if we were ill with any other flu like bug and are keeping fluids up/regular calpol increased pred for me and regular ventolin for the littlies. We have been told it is swine flu as i am a teacher and have been in contact with a previously confirmed case however we have not been swabbed so how they can be sure i don't know. The only difference was how fast the littlies(age 4) got ill one minute fine the next temp of 39.7 and 40 and floppy hence immediatly rang dr.

I'm sure in a few days we'll be back to normal in meantime we are flopping about relying on grandparent help and doing nothing - Just like any other bug and if anyones breathing gets worse as advised I will take them to hospital.

I am not complacent. I know it is ""out there"" but you know I could go out tomorrow and be run over by a bus! Just cross the bridges as you come to them.

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