Sunday, 21 August 2011

What Do You Do When the NHS Let's Your Child Down?

Apologies if this ends up as rather a ranty post, but I didn't get any sleep last night and the reason will become apparent.

Yesterday, we had a normal day, did a bit of shopping, got some nice food in, ready for the start of the X Factor. Anyone who has followed me on Twitter for the last year or two knows that I look forward to the X Factor, and generally join in with the banter that ensues. Last year I went to Twitter jail 3 times, and my follows went up week after week- even being retweeted by MSN.

But at 5pm, sat at the computer, Littlest started to cough.

This is nothing unusual for him- a tiny bit of running around, or even laughing, makes him cough. Its become something we have mentioned until we're horse with talking to doctors and Consultants. But it falls on either deaf, or in my opinion, uninterested ears.

Yesterday, though, he couldn't stop coughing. He could barely breathe for coughing. Concern turned to panic.

First we tried his inhaler. For a while now I've firmly believed and voiced that his inhaler does nothing. Again, that was true yesterday. I tried his other "reliever" inhaler. Again, still no use. I may as well have  given the inhaler to the sofa for the lack of effect it had.

By now, petrified as to why he wouldn't stop coughing, Elder grabbed him and put him on his lap. We tried to give him a cup of water, but he couldn't drink it.

Then, he went floppy. He couldn't hold his head up, his eyes were rolling. I screamed. Then I rang 999.

The operator asked me for my address, which I gave clearly- years of first aid training dictates that however frightened or upset you are, your address is vital, so you say it clearly, spelling any awkward words.

5 minutes turned to ten, Littlest getting worse and worse. I cannot put into words how frightened I was. The operator told me the Ambulance Rapid Response Car was outside the house, but I looked in the street- there were no cars, let alone a paramedic one, outside the house. She said "Its probably on your road, it wont be long". 

Ten minutes turned to 15, and still no ambulance. By this time I asked her where this "on our road" ambulance team was- they had actioned an ambulance and a rapid response car, and neither were there.

"They're just at the roundabout at the corner of your road" she said. "What roundabout?" I asked, "there is no roadabout near my house, nowhere near it". "The Great Missenden Roundabout". 

So, we had wasted nearly 15 minutes, whilst my son struggled for breath, waiting for two emergency vehicles which this woman had, inexplicably sent to the wrong town. A wrong town 12 miles away, 38 minutes (when not rush hour), and which does not sound, whatever way you say it, like Maidenhead. 

I told her my address. Twice. I gave my Postcode. Twice. Our postcode starts SL6. A Great Missenden one, I checked this morning via Royal Mail, starts HP16.

They hardly sound alike do they?

I passed the phone to Elder, I was speechless, angry, disbelieving that we had wasted 15 vital minutes. That this idiot who I plan on getting sacked wasted 15 vital minutes. 

What makes it worse was that Elder then had to repeatedly correct her on what number we live at. 

Five minutes later, an ambulance finally arrived.

Littlest was carried to the Ambulance, and was put straight on a nebuliser. I rushed around, picking up night clothes, shoes, pants and trousers for him. He had been playing after dinner and so his trousers from the daytime had been thrown off (he never wears trousers indoors, rips them straight off the minute he gets home), so I made sure he had those.

Then I jumped in the back, leaving Elder with a crying Mini.

You will not believe how ignorant Berkshire drivers are, refusing to move for an ambulance with the sirens blaring- one guy even had a go at the driver out his window for daring to overtake him.

Littlest's monitor showed his pulse and blood pressure was all wrong, something like 154 over 80 (or maybe I heard that wrong). By the time we reached the hospital, it was more normal, and he was telling the Paramedic about his birthday and his new playschool.

We saw a Doctor after an hour, and were free to go.

I am just beside myself. For years we have said he needs more help then we are given. For years we have said, pleaded that inhalers do nothing, that he cannot lead a normal life as he cannot run or laugh without coughing. Its plain unfair, considering the ignorance of a Consultant before he was born led to me not being monitored as I should have been and the inevitable born at 28 weeks happening. 

As he was born at 28 weeks, he has Chronic Lung Disease, but not one Consultant seems prepared to adequately monitor our child. The Doctor we saw in A+E last night was baffled as to why he has never, since leaving Neonatal care in December 2008, had a chest x-ray. But that doesn't surprise me.

It seems that, with the NHS struggling, paperwork takes precedent over patient care and proper investigation into a patients illness. 

I now am unsure whether I want him to start playschool, couldn't sleep last night for fear it would happen again, am unsure what the hell I'm meant to do- go see more uninterested consultants?

One recently on seeing Littlest for under ten minutes with none of his notes spent the whole appointment not writing down any concerns, and then was so well informed he filled out a Disability Allowance update form claiming my son "previously had" Chronic Lung Disease. CLD does not go away, ever. It can be managed, where Consultants can be bothered, but he had it for life. So, Littlest's money was stopped, and I now face up to 22 weeks of appeal. When I questioned the Consultant on his slip up, he said that he hadn't meant to imply that Littlest no longer has CLD. Yet that's exactly how "previously had" reads. When I questioned his knowledge of written English, he gave me a mouthful of abuse, and told me to "challenge him" by way of complaint. Yes, me, his Mum, who sees him 24/7. Over a idiot misinformed and obviously lacking basic written skills Consultant, puffed up with a few letters after his name who saw him for under ten minutes with no previous knowledge of him, and who showed not one iota of interest in our concerns. He then had his secretary ring and tell me he was now refusing to see Littlest again.

This is a two year old boy. My son, who not one NHS person seems to care about. Not one.


  1. Truly shameful u were treated this way. Hope u get the help needed for your child. X

  2. Awww, flower, this is a disgrace. It is absolutely shameful as Jontybabe states. To have a consultant refusing to see your son is bad enough but to have to put up with ignorant medical staff as well is simply not on. I wouldn't blame you for lodging an official complaint about this treatment. It's happening too often and something has to be done.

    Good luck with whatever you decide to do, but don't leave it too long if you do complain because you'll need to state the facts to the letter.

    I moaned about NHS treatment on my blog a while ago and one comment I received was from an American person who virtually told me "your service is free, what do you expect." It wasn't in those exact words but it's what they meant. We expect our children and ourselves to be taken care of properly, whether we're paying privately or going on the NHS. Makes you wonder if the doctors with all those letters after their name really care about human life at all, and aren't just simply interested in their bank balance.

    CJ xx

  3. What a terrifying experience : ( Thankfully it turned out well but it's shocking that your son is being let slip through the NHS cracks like this. I hope you and him can get the help you need. x

  4. oh hun, thats disgusting!!

    i have a little boy who has cerbral palsy, it was a cock up by the NHS, negligence on their part, which they had admitted and waht Pi**es me of fthe most is that, now even after their screw up caused th problem, they cant provide the help and care he needs!!!

    as for the DLA, we too had to appeal for Will's DLA, yt some guy down the road with a 'bad back' can get it?!! nightmare!!

    i would be demandning some sort of help, further investigation into his condition, to make sure what happened last night wasnt able to happen again. also, complain about the person on the end of the 999 call!

    hope hes feeling better today and you get some sleep!

    please dont keep him from playschool, he will com on no end being there. i sent will, and it was the hardest thing, iw anted to be there all the time, protecting him from all the things otehr people dont notice, but i guess he has to grow up some day :( ((huge hugs)) xx

  5. That is awful. Reading your post made me go cold all over describing your wait :(
    Was it Wexham Park Hospital you went to? I hadnt realised you lived near me, i am quite near Slough, over by Uxbridge in a place called Denham if you have heard of it.

  6. I am sympathetic with your sons condition, but I find the fact that you are having a pop at somebody else about their use of the English language somewhat ironic.

  7. I am appalled - what a catalogue of errors.

    People are always saying the NHS is free but it is not - we pay for it with taxes and you have every right to complain.

    In the meantime, if you can afford it (I know not easy in the current climate) get a private referral to a specialist from your NHS doctor. I did this with my son who has allergy problems. It cost £150 but he spent an hour with us going through his whole medical history and our concerns - then he said he was happy to treat him on the NHS and things got better. You need to see your GP and ask him to identify the most suitable consultant and target him to treat your son. There are good doctors and bad doctors - as in any profession, so go to your GP, cry if you have to, and make sure you get another referral. (Either private or NHS.) In fact - demand it. It is not acceptable for a small boy like this to be so badly treated.

    Good Luck:)


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