Dear Mr S.

I am writing this letter to my daughter’s paedatric neurosurgeon. I felt the need to write it down and share. Whether I actually send the letter to him I don’t know yet.

Dear Mr S.

I called your office today to ask your secretary to give you a little reminder that you promised to call me last week. I know you are an incredibly busy man, but my daughter is eight years old and has been suffering for more than eight months and is very much in need of your care and attention. Also, I am a very stressed out mother who has barely slept for the last week.

Constantly on my mind is how my daughter’s condition has become so bad. I really can’t help thinking that if she had been treated properly and promptly in the beginning we would not now be facing surgery. For two weeks I brought her into the Accident and Emergency Department and was constantly told it was nothing to worry about and it would fix it self. It didn’t and she was offered a CT scan of her neck. The scan showed a subluxation of the atlanto occipital joint and she was admitted to your ward.

For a week she was treated with muscle relaxants while we waited for a traction bed for her. The bed arrived but the decision was made not to go ahead with traction and to try physio therapy instead.

I was happy to go along with this. Of course, the less distress to my daughter the better and if it could be put right by physio therapy then I was happy to bring her to the hospital twice a week.

It soon became apparent, however, that the physio therapy was not working. Her nurse was really concerned but had to push for another CT scan. After the scan the physio therapy was stopped, we were not told why, but we were then left in limbo. For weeks I waited for a call to come and see you and find out what was going on, what the next step was going to be. I was told that you were busy, that there were no appointments in your clinic, that I had to wait. 

I became impatient and called the Patient Liason team at the hospital who finally managed to get me a clinic appointment. First my girl had to have another CT scan. At the appointment we were told she was going to be admitted for a manipulation as the subluxation had become worse and it needing correcting. So my daughter was taken to theatre and the manipulation performed and a halo traction brace fitted.

She wore the halo for thirteen weeks and on removal we believed that she would now be fixed. This was not the case, her neck began to slip back the very same day. At her halo removal check it was obvious that something was wrong so I was told she would need another CT scan. After the scan we were left in limbo again, not knowing what was going to happen next. I called your secretary who then managed to fit me in for an appointment.
The scan showed that a piece of my daughter’s bone had deteriorated and it was unlikely that it would hold her neck up without further intervention. 

Then, well, we are still waiting to hear from you. 

The questions going around in my mind are, how, when and why has her bone deteriorated? Was it in the beginning when her neck was so twisted the bones were grinding against each other? Did it happen while she was having physio therapy trying to make the bones go back into place? Maybe it happened during the manipulation? Why has it only just been detected, did it happen very recently? My daughter has had many scans and xrays (I have the dates and times of every one written down) why wasn’t it noticed sooner? 

More importantly, what are you going to do for her now, and how much longer will we be waiting.

Yours Sincerely,

A Distressed Mum of a Beautiful, Brave Little Girl who deserves to be treated better.

This post will be duplicated on my other blog ZebraHooves 
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  1. Julie Tomkins
    April 7, 2014 / 10:56 am

    Send it. Many many questions unanswered here. I didn't realise the extent of you being fobbed off. My opinion? Total lack of communication between staff. Again opinion only but yes the manipulation COULD have made matters worse. If a consultant says that you will be contacted then you should be, especially in Lucy's condition and pain she has endured. Lack again of communication in the admn dept. This is a children's hospital they should have every child's best interest at heart especially those in severe pain, as there is obviously nerve involvement here. Also being close to the spinal cord!… You have not just been fobbed off once here. But time after time. Once is possibly excusable, many times is unforgiveable. I personally wouldn't let it rest there. Write to MP and even send notes to BMA.

  2. Anonymous
    April 7, 2014 / 11:28 am

    I agree & can't put it any better than Julie x T x

  3. April 7, 2014 / 11:41 am

    I agree also, SEND IT, make sure it is recorded and signed for, and I would also put a note at the bottom of the letter saying that this letter has also been sent to Central News and the Birmingham Evening Mail !!!! Massive hugs babes xxxx

  4. April 7, 2014 / 11:52 am

    Totally agree, you should send it and get answers. I agree with Julie also write to your MP. You can't be fobbed off and your daughter should be treated immediately.

  5. April 7, 2014 / 12:00 pm

    Oh Anne what a difficult situation. So hard to have a child go through this and then to have to fight just to get her seen when she should be is a complete nightmare for you. When I was 10 I was in and out of hospital with (what was then an undiagnosed condition) and my poor mum had to deal with the battles of why things were missed / not spotted sooner / the right course of action etc etc. If you trust the consultant then i would say just try to get to see him ASAP (which i know you are doing) and voice your questions to him face to face otherwise I am guessing they could get defensive and become unhelpful (and it may not be his fault that you are not getting seen but the secretary or whoever is supposed to be arranging the appointments). If you don't feel they are doing the right thing in terms of the decisions they are making, then perhaps complaints etc might work but is there an alternative consultant she could see? We'll be thinking of you and praying for you this week for a quick outcome to getting that appointment! x

  6. April 7, 2014 / 12:10 pm

    I would send it. How worrying for you and your family.I agree too that there is a total lack of communication here.
    I am hope your daughter gets the treatment she deserves. Hugs xxx

  7. April 7, 2014 / 12:18 pm

    I agree with all of the above and wish you the best of luck at getting some speedy answers and action.

  8. April 7, 2014 / 12:38 pm

    Send it but also add in that as Lucy was atbthe appointment with you and knows about the missing bone etc etc she is extremely distressed and in need of reassurance and answers

    praying for you yo have the strength you need to get through the next steps and hope you get some answers soon.

    Much love gentle hugs and plenty of prayers xxx

  9. April 7, 2014 / 12:51 pm

    I agree I would definitely send it. How worrying and stressful for your family. I hope you get an answer and your daughter gets the treatment she deserves

  10. April 7, 2014 / 3:43 pm

    I think you should definitely send it, you need answers! I really do hope you get them as she deserves the treatment x

  11. April 7, 2014 / 7:01 pm

    I agree with the other commenters please do send this. It brings tears to my eyes to read what you have been through and you really need some answers. I hope that you get both the answers and necessary treatment very soon.

  12. April 8, 2014 / 5:53 am

    It sounds like you need answers so I would send the letter. The NHS is over-stretched, but I don't think that's an excuse for leaving you in limbo like this. There must be better communication between doctors and patients. I'd hold off sending the letter to the media / your MP / the Health Ombudsman though until you've given them a chance to respond. But, if you're not satisfied by their answer, definitely take it as far as you think it needs to go.

  13. April 8, 2014 / 9:14 pm

    Sounds awful treatment with the lack of communication being a big issue. Might be worth sending it to PAL as well,you mentioned you'd already spoken to them, but they should be able to get somewhere with communication from the consultant via a complaint.

    Hope you get it solved soon for her.

  14. April 11, 2014 / 12:22 pm

    Send it. I dont know how I can help to make your voice heard but if theres anything that i can do just say it. This is something serious and your daugter needs attention. Goodness! #pocolo

  15. April 13, 2014 / 5:32 pm

    You need to send this. No doubt whatsoever. You are her Mum, you know her best and this man NEEDS to listen to you. You need answers. I hope this works and you get the answers.Sometimes you need to shout really loud to get them. All the best my lovely, this must be such a worry for you. Thank you for linking to PoCoLo 🙂 x

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