Fighting to get help

karategirl
karategirl Online Community Member Posts: 13 Listener
in Families and carers
Our 20 month old son had his mri scan for us to be told over the phone he had pvl damage and so there saying cerebral palsy. Well i feel really let down with the nhs we waited 6 weeks foe his walking frame and only got it due to complaining and then me picking it up. Still waiting 6 months down the line for a referral for the eye dr and ent. Was meant to have an urgent referral to the dietician as he has constant diarrhoea and they wanted to give us an appointment end of june. 
I understand fully the state of our nhs ( our hospital has bee  shut at night). But its so frustrating to have to fight everything. His physio stopped while we was waiting for his walking frame so these delays have a knock on effect with other appointment 

Comments

  • [Deleted User]
    [Deleted User] Posts: 728 Listener
    edited April 2017
    The user and all related content has been deleted.
  • AliceS
    AliceS Online Community Member Posts: 14 Contributor
    edited August 2017
    @karategirl Sadly, everything in regard to support in the SEN world is a battle or a fight. I document our route to finding the correct support for my son on a blog - www.livingwithajude.co.uk or find us on Facebook - livingwithajude. I write a great deal about out dealings with the council and it isn't always pretty. My only advice is persevere but don't expect everything to happen within days. 
    My son had to wait a year and a half for an autism assessment for example. It's a complete nightmare.
    My son was turned down for physio on the grounds that he can walk and turned down for OT because his concentration isn't good enough! It's like any excuse possible.
    Happy to answer any specific questions you may have but support generally varies county to county.

    All the best to you and your family.
  • anaqi
    anaqi Online Community Member Posts: 52 Contributor
    The NHS is stretched to braking point and I think everyone is having to fight for the help they are entitled to.  I've had to wait up to 12 months to see specialists and I had to apply for a Personal Health Budget to get physio as you can only have 6 sessions on one body part and I need 12- 18 months.  The application took 11 months.  

    My son was told to wait 6 months until he turned 16 before the doctor could refer him to a gastroenterologist because they don't see patients under 16 and he couldn't see a paediatrician because by the time we got an appointment he would be too old and they would discharge him.  

    It's tough getting the help you need but don't give up the fight.  
  • karategirl
    karategirl Online Community Member Posts: 13 Listener
    Its just terrible it really is and the scary thing is i really can not see it getting any better. I know we are not the only ones its just so frustrating and mentally draining. 
  • nanof6
    nanof6 Online Community Member Posts: 199 Empowering
    i don.t no weather you have read the post, the wheelchair referals from the hospitals is going to stop, and a few other things.the way its looking i think it wont be a free NHealth much longer.
  • kat251979
    kat251979 Online Community Member Posts: 6 Listener
    I'm currently fight with Edinburgh Council to get adaptions and a extension for my 2 children that have hurlers syndrome. The answer from council was raise the funds yourself. I was told to give up my job within recruitment and car dealers. I've also serviced queen n country for what to get nothing back when I need help. Please share it mj n codys funding page for adaptions & extension to be built so they've got the rooms on ground level.https://crowdfunding.justgiving.com/kathleen-duncan-1

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