Friday, 2 November 2012

NHS is a dirty word

Right. Get the kettle on, grab a cuppa and go on, you might as well get a biscuit too as this is going to be a right tale and a half. This is a cautionary tale and I hope by sharing it I can raise awareness of an issue that I don't think many parents with little boys really know much about.

Lets Start At The Very Beginning . . .
The day JC left hospital he was given the once over by the lovely midwife who had looked after me so well while I was in the hell hole that is our local maternity unit.

"He is absolutely perfect!" she told me. "The only thing is, he has undescended testes but don't worry they will probably drop down themselves in the next few months" she reassured me.

Over the next year we kept checking for them and mentioning the lack of them to the doctor and health visitor at each check up/vaccination. Each time we were told "Don't worry we'll keep an eye out for them, it'll get picked up at his check up."

The feeling of the issue being unresolved would fleet into my consciousness from time to time but I would discuss it with my health visitor and would trust her advice that there was nothing to worry about. Even when we moved to a different area, I brought it to the attention of my new Health Visitor who seemed unperturbed.

The Shit Hits The Fan . . .

After his 2nd birthday I started to get a bit 'ancy' about it. So I decided to push and made another appointment with my GP (despite being told by my Health Visitor to just wait until his 2.5 year check up). The GP examined him and confirmed that neither testicle had dropped down and that she would refer him to the hospital for a scan but that he would need an operation as the testes are most likely in the abdomen.

I did some research. Yes, I admit, I googled it. Yes, yes, yes, I know, you shouldn't google it, it's always bad news. According to various sites, including the NHS health advice site, if they are not operated on by the time they are 2 years old, there is a high chance that the testicles will need to be removed depending on the condition they are in (the heat of the body causes them to be malformed and kills of the viable sperm). Should they be able to save them and move them down into the scrotum, there is a high chance that the patient will be infertile. There is also a risk of testicular cancer, both as a child and as an adult. WHAT!?!

I am lucky enough to have a friend whose hubby is a urologist, not with little boy bits but the biology is the same. He confirmed my fears that yes, my google search was accurate and that if it was his own child he would be demanding a referral to a specialist asap.

At this point, I'm not only worried and anxious but I'm extremely annoyed. It could be forgiven if they'd missed it and only just discovered that he was missing his testes but they knew about it from birth. All it would have taken was a referral a year ago. A letter to the right person a year prior to this point could have made the difference between my boy having his own babies in the future or not.

I'm raging. I go into the doctors and she placates me with 'he's well, he's healthy, let's try to stay positive, let's not jump the gun' mixed in amongst the carefully worded 'if I had to stand up in court and defend myself against negligence I could but I can't speak for the previous GP or the Health Visitors, there has been some failings, if I were you I'd be keeping a timeline of evidence, it's hard to tell what the long term impact of this will be so it's best to keep notes'.

Are you still with me? I apologise for the length of this post but as many of my readers know, blogging is a type of therapy for me and this is really helping me get it all out!

So she sent off the referral to the hospital. I've phoned a few times to chase it up. The scan is really the important bit because the seriousness of the implications will vary depending on the location of the testes within his body. The timescales we've been given for this scan keep changing. Firstly we were told 4 weeks, then 6 weeks, then 8 weeks and now we've be told 12 weeks from the date of the letter informing us he was on the list (which in total would be 18 weeks). There are no private clinics in Scotland that will scan children and even if they did it's hundreds of pounds for the scan and would be thousands for the op.

I've tried contacting my GP to ask her to rush it through but she has refused. She told me that at the moment he appears healthy so there is nothing to worry about. I think she has missed the point. That's like saying 'you might have cancerous cells on your testicles, you might be infertile but until we scan you we won't know so lets not scan you and just think everything is fine'. What a load of utter bullshit.
The Outlook
I'm trying to keep positive and calm. I'm trying not to blame myself for not being a pushier mum. I'm trying to do all that I can to move him up the list. I'm trying not to panic. I'm trying to be patient but I am finding this whole situation extremely trying.

Thanks for listening and letting me ramble. xoxo

*disclaimer- I hate it when people slag off teachers. It's really irritating when I feel like everyone is against the profession I work in. I don't mean to cause any offence to any health professionals who may read this post. There are a lot of good health care providers out there and I am aware that budget and staff cuts contribute to a lot of the problems people are experiencing at the moment. I don't expect Health Visitors and GPs to be specialists in all areas and I appreciate we all make errors in judgement. It just sucks when it your child at the other end of someone's incompetence. 


  1. Hope you get some joy soon and that all's ok with JC.  Our HV told me to keep an eye on N's early on and by 1 he might need to be checked.  Luckily his dropped, but otherwise, lots of people don't know what they're looking for or don't get the support and advice.

  2. Thanks Emma, I'm glad things worked out for your little one. X

  3. I can totally understand why you're so upset. It's not on that it's gone on this long without it being properly addressed. I'm upset for you honey. I really hope that it all gets sorted and all is okay with JC so you can move on. I'm a big fan of the NHS but sometimes it sadly fails - I've been there myself when it's let me down. Big hugs to you x

  4. Thanks Heather, I've never been anti NHS but since I fell pregnant I've had one bad experience after another repeatedly. My next step is writing a begging letter to the hospital cc in my GP and hope a bit of scaremongering will move him through the system a bit quicker. He has been complaining on pain in his groin and lower abdomen and it really worries me. I would really just love a worry free Christmas x

  5. Claire, you have everyt right to be worried, anxious and angry about the situation but the one thing you shouldnt be doing is beating yourself up about it.  You  listened to the advice you were given and believed it to be correct.  Hopefully there will be a positive outcome from this.  I'll be thinking of you.  Keep us informed x

  6. Just read this and wish I had read it sooner.  Oh you poor poor darling and poor JC.
    I will add you to my prayers
    All my love
    Liska xx

  7. Thanks Liska, he has finally been given a scan for the 19th Dec so hopefully it will be good news x

  8. Thanks Sarah! I thought I'd replied to this two weeks ago but my comments have been disappearing. We now have a pre surgical appointment on the 19th of December so at least we will know before Christmas what the outcome is likely to be. Thanks for your support xx


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