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Concerns haven't been addressed

JancieJancie Member Posts: 5 Listener
edited January 23 in Disabled people
Hi everyone, not really sure what I'm hoping for posting this but here goes. 5 years ago I had a ruptured brain aneurysm which was coiled, they found 5 other aneurysms which have been left alone for now, a couple of months later I developed hydrocephalus and had a shunt fitted(with magnets) on the whole I have made a good recovery. I go every 2 years for an MRI scan to check that the other aneurysms haven't grown and I always have to phone beforehand to let them know that someone needs to be available to reset my shunt after the scan, when I phoned before my last scan in May 2018 the lady I spoke to said I was booked in to go in their new scanner but due to the type of shunt I had I could never go in that 1 as it was too powerful and could damage my shunt, she said she would make sure the MRI department knew about this. I had my scan and went to have my shunt reset which is a quick procedure and only takes about 10 seconds, I have never had a problem with the shunt being reset. 7 hours later I was still there because despite several people trying no-one could reset my shunt, the machine was deemed as faulty and I was asked to go back the following week(120 mile round trip) as they said they would have another machine by then I did this and again no joy, I told them what I had been told about not being able to go in the new scanner and asked for someone to confirm I hadn't been put in it and I have requested that information numerous times in the last 20 months without ever getting a reply. It now turns out that I need to have a new shunt put in on the other side of my head and because the faulty 1 is overdraining I have masses of tangled blood vessels on my spinal cord which is highly dangerous and will require surgery and radiation. I am furious that this has happened and even more annoyed that my concerns haven't been addressed. 

Replies

  • Tommyb92Tommyb92 Community champion Posts: 73 Courageous

    Hi There Janice, I'm sorry to read this, I work in the NHS Myself, I also have a Shunt and Hydrocephalus; however mines not programmable. Firstly I would suggest contacting the Patient Advise Liaison Service at the Trust to make them aware of this issue. I can understand how frustrated you are. I completely sympathise with you. They may be able to help you get some compensation for your transport costs but this will be something you would need to pick up with the team at the Trust.


    Please come back to me if you need any more advise.


    Thanks Tom

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  • Tommyb92Tommyb92 Community champion Posts: 73 Courageous
    I forgot to add that they will be able to raise the issues with the heads of department in the trust to make sure they are aware of whats happened.

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  • JancieJancie Member Posts: 5 Listener
    Thanks for your reply Tom, I actually went to the Pals office at the hospital to register my concerns but never heard anymore about it, I also got Headway involved who contacted 1 of the consultants but again nothing came of that, numerous consultants have been made aware of my problems and concerns yet not once has anyone acknowledged the matter. 
  • Tommyb92Tommyb92 Community champion Posts: 73 Courageous

    Hi Janice, in this instance I would follow up with PALS, see if they can get a response for you. They should be the first point of call, please let me know how you get on! Thanks Tom

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  • Tommyb92Tommyb92 Community champion Posts: 73 Courageous
    If all else fails you can contact NHS England on Telephone: 0300 311 22 33
    Email: [email protected] many thanks Tom

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  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Oh dear, what a palaver for you Jancie!

    I complained about an A & E problem some time ago and felt it was properly handled and dealt with and I was kept informed of the procedure.

    Your problem is much more serious and you should be given the courtesy of at least an acknowledgment.

    Hope things improve chick xxx
  • JancieJancie Member Posts: 5 Listener
    Thank you both for your replies, I have e-mailed Pals again and hopefully they will respond. 
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,251 Scope community team
    Hi @Jancie and a warm welcome to the community! I hope PALS are able to support you at all. Please do let us know how you get on and if there is anything else we can do.
    Community Partner
    Scope

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  • JancieJancie Member Posts: 5 Listener
    Thanks Chloe. 
  • CharlotteGCharlotteG Member Posts: 9 Connected
    If you don’t get any luck with PALS I have previously found an email directly to the chief executive often triggers a response. You can usually find name and email on trust websites or try linked in. 
  • JancieJancie Member Posts: 5 Listener
    Thanks Charlotte, may end up doing that. 
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