Sunday, 23 October 2011

Six things every parent should know about meningitis

Go on.  Admit it. You don't really want to read this post do you?

It's like turning over that stone. You know there's going to be something gross under it. You know that you don't really want to get whatever it is out and deal with it.  Wouldn't life be much easier if you just left it there and pretended you never saw it anyway?

Well of course it would.  Life's often easier if you ignore the stuff that scares you. And meningitis scares us, especially as parents; apparently more than any other disease.

But ignoring the things that scare us doesn't make them go away, and it doesn't make them easier to face when we do have to, so it was with that in mind that I agreed (actually I was enormously flattered to have been asked*) to attend the UK Blogger forum Unfolding the complexities of meningitis last Thursday.

Faced with representatives of the three UK meningitis charities and a GP, Dr Rob Hicks, we bloggers were informed, enlightened and able to ask as many pathetic, stupid and worried questions as we liked.  I came away, not with my fears allayed (how could they be?) but determined that as many people as possible should learn what I had. 

Who knows? We might save a life.  Just read the blue bits... honest, it won't take long.  And if you've got questions, put them in the comments - the charities have promised to provide an answer to every question. 

Meningitis isn't that common

The good news first.  On average, a GP in the UK will see two cases of meningitis in his or her career.  That's it.  Two in a career of, what, forty years, seeing say fifty patients a week.  It's not common.  It's a horrible, terrifying, life-threatening disease, but the chances are you and your children will never get it, or even come into contact with it.

That said, what that means is that most GPs won't have that much experience of meningitis.  They also don't know your child as well as you do.  If you're worried, and you think your GP isn't taking you seriously, call Call NHS Direct or NHS 24.  Or even 999.
Don't wait for the rash

The charity representatives said to us that they had been victims of their own success.  Everyone knows about the meningitis rash, but this is a late stage symptom and doesn't appear in every case.  The rash is actually a symptom of the onset of septicaemia: the body is shutting down, poisoned by its own blood.  By the time it gets to that stage the disease is very, very serious.  Don't look at a sick child thinking "It can't be meningitis, there's no rash".  It could be. Get help.

Oh, and practice the tumbler test too.  It sounds awfully simple in theory, but it's much less so in a panic.  Get a glass, put it on its side over the rash. Press.  If the rash goes, it's not septicaemia.  If it doesn't, ring 999.

Three symptoms you should worry about before then

The difficulty with meningitis from a parental or indeed medical professional, point of view is that there's no one distinct symptom that you can look at and say "Phew, it's not" or "Panic, it is".   It can often appear as flu-like, and there are a number of different symptoms that can appear.  Click here for a full list from the Meningitis Trust, or here for their smart phone app or call 0800 028 18 28 to get a free credit card sized symptoms card to keep in your wallet, or on the fridge, or anywhere you'll know where it is when (if) you need it. 

That said, Rob Hicks said that he, as a GP, would be particularly worried by the following signs, any or all of which might appear before the rash:

  • Cold hands and feet even though the child (or indeed adult) is hot and feverish
  • Muscle, joint and limb pain such that the child can't stand up
  • Pale, blotchy skin and blue lips
Got those? Get help.  Now.

If your child is fully vaccinated he or she still might get meningitis
This is why I started with the good news.  Even if your child has had all their NHS prescribed vaccines, and their red book is fully up to date with a big gold star on the front, your child (or indeed you, your cousin or your friend) might still get meningitis.

This is because there are multiple different sorts of meningitits and only some of them can be vaccinated against.

Briefly, meningitis is an inflamation of the lining of the brain which can lead to blood poisoning (septicaemia) but which, crucially, can be caused by a number of different bacteria (or viruses or fungi, but these are less common and generally less serious), each of which responds (or doesn't where none is available) to a different vaccine.  

Children in the UK are vaccinated against pneumoccoal disease, which can cause meningitis as well as pneumonia, HiB (another cause of meningitis) and meningococcal disease type C.  That's it, and it doesn't cover the biggie.

The biggest infectious killer of children under 5 in the UK is meningococcal disease type B.  There is, at present, no vaccination for this disease, although one is in development. 

In addition there are three other types of meningococcal disease, A, Y and W135 (no, I don't know why it has a number either), which tend to occur in other parts of the world and are very uncommon in the UK.  We're not vaccinated against those either.

Where to get help fast

If left untreated 90% of people who catch meningoccal disease type B will die.  Even if diagnosed early and treated, 5-10% will die and up to 1 in 7 of the survivors (and new research by the meningitis charities suggests that this may be an under-estimate) will be permanently disabled.

Speed is absolutely of the essence.  And this is why all the charities and the doctor were unanimous.  If you think it might be meningitis, get help. 

Call your doctor.  If you get fobbed off or ignored, insist, or call someone else.
Call NHS direct on 0845 4647  or NHS 24 (in Scotland) on 08454 24 24 24 (I've actually rung both from Scotland, and they don't turn you away if you're the wrong side of the Border.)
Call 0800 028 18 28 for the Meningitis Trust's 24 hour helpline to talk the symptoms through with someone who knows.
Or 0800 8800 3344 for the Meningitis Research Foundation's helpline.
Call 999.

Don't feel stupid or guilty, feel relieved and proud

If you're like me, you'll be thinking "Yes, but if it turns out just to be one of those non-specified viral infections it was last time, they'll be looking at me like I'm neurotic and then I'll feel stupid and guilty for wasting the doctor's, or worse, the paramedics', time".  But we were told, again and again, that that's wrong.  If you see the doctor and it's not meningitis, you should feel relieved, obviously, and proud that you have taken action that could have saved your child's life, even if it turned out not to be necessary.

You are your child's advocate.  If you don't fight for them, no one else will.

The Meningitis Forum was an amazing thing to have taken part in. I don't tweet, but apparently tweets from those taking part reached over 21,000 people on Thursday alone.  This is important information and should be disseminated.  Please pass it on.   The Meningitis Trust wants symptoms information in every house in the UK;  I really hope that it is now in yours...

The three charities who attended the forum were

The Meningitis Trust - which supports people affected by Meningitis in the UK
Meningitis UK - which does pure research into finding vaccines to prevent against all forms of meningitis
The Meningitis Research Foundation - which funds research, supports those affected and raises awareness.  They are currently, in advance of the new vaccine, running a campaign called Counting the Cost: weighing up the cost of caring for a meningitis sufferer against the costs of vaccination.  You can sign their petition here asking the Government to do all it can to support immunisation against meningitis.

All of them have agreed to answer any questions, any at all, on meningitis that you put in the comments of this post.  Now is your chance....

Thank you.

*In the interests of full disclosure, Novartis, the drug company that is, you guessed it, behind one of the two new vaccines against meningoccal disease B currently in development, set up the forum and paid for me (and M, who throroughly enjoyed his trip to Birmingham) to go.  Thank you to them.


  1. Well, I hadn't heard any of those symptoms from the GP. I feel a little angry that the medics have taught us so well to look out for a symptom that means you've left it too late. Probably not their fault, but I've been through two rounds of being taught about that rash. First time round, we were taught "press the dots, and if they don't disappear, then it could be meningitis", but then someone obviously worked out that if you're pressing the dots, you can't actually see if they disappear. That's when round two, the glass test, came into being.

    What about the "stiff neck" symptom? Is that important? Mind you, whenever I've had a sick child and I've asked "does your neck hurt?" the answer is usually yes.

    And what should you DO, while you're waiting for help to arrive? Give maximum dose of calpol and ibuprofen? Sponge down with tepid water?

  2. Its always good to keep highlighting these symptoms. It can be easy to forget some of the lesser known ones.

  3. Very useful posts, it's good to know all the contact details, the possible symptoms but just hoping that I will never have to use them.
    My sister, a teacher, caught meningitis last summer. It was finally diagnostised as a viral form, thus less life threatening but still it was very painful for her and scary for all her relatives.

    Still could not manage to get a feed from your blog but it does not really matter, I am checking it out regularly :-)
    Me&The Girls.

  4. Iota - I have asked the experts and will write a post with the answers, but I think the point about those particular symptoms was that they are the ones to look out for if your child is just fevery and ill but with nothing else that you can put your finger on (so no stiff neck, no dislike of lights, no headache, no vomiting etc etc) and you're trying to work out if it's a "non-specific virus" or something more ominous. The stiff neck is absolutely significant and we asked about that - apparently they physically can't put their chin on their chest, not just that it's a bit achy. The photophobia is another definite sign to watch out for.

    As for what you do, I will find out.

    Mum of All Trades - it was really useful. A bit like a first aid refresher course. You sort of think you know it but would you in a crisis....

    Me&the Girls, sorry about the feed. Will see what I can do, but am so un-techy I'm not sure I'll manage anything. So sorry (and pleased, if you see what I mean) to hear about your sister. A mate of mine at university had it (classic time to get it too) and he was fine as well, but like your sister it was viral. I've still never seen anyone quite that ill though.


I know. I'm sorry. I hate these word recognition, are you a robot, guff things too, but having just got rid of a large number of ungrammatical and poorly spelt adverts for all sorts of things I don't want, and especially don't want on my blog, I'm hoping that this will mean that only lovely people, of the actually a person variety, will comment.

So please do. Comments are great...