At risk of Sepsis, but no medical support - Urgent advice needed please! — Scope | Disability forum
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At risk of Sepsis, but no medical support - Urgent advice needed please!

My 16 year old daughter is awaiting an autism diagnosis, is already diagnosed with ADHD, Dyspraxia, SpLD, Sensory Processing Difficulties, and Anxiety. She has developed a severe phobia of needles and medical procedures as a result of previous, poorly handled, healthcare. She also has a severely ingrown toenail, which was due to be operated on last winter.
The operation was finally planned for may (just gone), and I tried to discuss my concerns with the surgeon, with our GP, with CAMHS and the local Autism service... also with the nurse, the anaesthetist, PALS. No one really took much notice, and the operation had to be cancelled because she was too terrified to go to the hospital.
I have submitted a formal complaint, and had a very detailed response about why this has happened, and absolutely nothing about how we resolve it. It has been escalated to the ombudsman, but my daughter is at constant risk of sepsis, has already had several courses of antibiotics, and I still haven't managed to get anyone to move this forward at all. Even the Health Liaison Manager for the Local Authority Learning Disabilities Team has tried to sort it out for the past two months without any success even though her plan sounds realistic and will possibly work. I paid for a private paediatrician (apparently 16-18 year olds cannot access the local paediatricians), who has written to advise the GP to prescribe Lorazepam for the day of the surgery. Still nothing at all from the hospital.
Even if she wasn't at risk of sepsis, she has already had to change college courses because her mobility is limited, and it's too painful for her to be moving about a lot (she wanted to do animal care). Her anxiety levels are through the roof, and she has become much more withdrawn and inactive.
What on earth can I do to progress this? It seems like blatant discrimination to me... is there a solicitor who could threaten them with legal action? Should I go to the papers? (my daughter would really really hate that!) does anyone have any suggestions please?


  • woodbine
    woodbine Community Co-Production Group Posts: 5,251 Disability Gamechanger
    edited September 19
    Offering PIP advice to people with epilepsy.
  • kiwi_1706
    kiwi_1706 Member Posts: 28 Connected
    Well, as I said, I am trying to find a way forward. I'm not really looking to blame anyone, but it would be helpful to be able to get the reasonable adjustments in place which would allow her to access the procedure. The Adult LD Health Liason Manager who has been trying to help, has suggested desensitisation support, a mild sedative from the gp in the run up, a stronger sedative at the hospital, and then GA via a mask, amongst other things. So far, there isn't even any conversation happening. No one at the hospital is getting back to her, or me.

    Not in my wildest dreams could I afford to pay privately for the operation.

    I must admit I didn't find your response at all supportive - perhaps it would be better to refrain next time. 
  • poppy123456
    poppy123456 Member Posts: 23,694 Disability Gamechanger
     I definitely don’t think that going to the paper’s is going to help your daughter here. In fact it could make her even worse and you’ve already said she would hate it if you did. 
    I don’t have any advice for you but I wish you good luck going forward.

  • woodbine
    woodbine Community Co-Production Group Posts: 5,251 Disability Gamechanger
    I have removed my comment, as it seems to have caused offence and that was not my intention, what I will say is it seems that people are trying to help, its a difficult time for the NHS.
    But I will consider myself told off and refrain from further comment  :'(
    Offering PIP advice to people with epilepsy.
  • kiwi_1706
    kiwi_1706 Member Posts: 28 Connected
    I totally agree... I doubt I would ever go to the papers about anything, tbh. Stupid thing to write, really. 
  • Teddybear12
    Teddybear12 Member Posts: 752 Pioneering
    edited September 19
    Hi @kiwi_1706 Would a mild sedative from your GP be enough to get your daughter to go to the hospital ? I do understand your frustration as you are only trying to do your best for your daughter. Unfortunately with Covid 19 and operations being cancelled your daughter would not be classed as a priority. Also would the hospital want to give a strong sedative and the GA. How would she be with a mask?  Is your daughter's GP monitoring any infection in her toe? Sorry too many questions just my thoughts. You are stronger than you think, good luck.     
  • kiwi_1706
    kiwi_1706 Member Posts: 28 Connected
    Hi Teddybear12. 

    Thanks! I don't mind the questions... 
    I'm not sure about the sedative... My preference would be to put her on a sedative for a few days beforehand... But I am content to try whatever they will agree to. 

    The Adult LD Healthy Liaison Manager supports adults with LD going into hospital, and she reckons the medazolam is often administered before a GA in that cohort. Daughter is not good with the mask, but medazolam is sedating, and prevents good memory recall of the procedure, so prevents further traumatized memories. Apparently. 

    GP isn't monitoring. We're waiting for a month or more for routine appointments atm. They will see us same day when I see signs of worsening infection though. 

    Her op wasn't canceled because of the waiting list... It was canceled because they didn't address her needs. Water under the bridge now, and she's not even on a waiting list at the moment because they just haven't considered her issues at all. I'm not trying to jump the queue... I'm trying to get her into the queue.

    We just managed to enroll her on a specialist college course for autistic teens, and she really needs to be developing some independence while she's there with the right support.... But she'll miss a lot of that if she doesn't get mobile... And of course, if she ends up in A&E she'll end up more traumatized again. 
  • Teddybear12
    Teddybear12 Member Posts: 752 Pioneering
    edited September 19
    @kiwi_1706 Just had a thought when my daughter needed a port fitted in her chest she could not have a GA because of her breathing so was heavily sedated and had a nurse sitting holding her hand and talking to her. They also played her favourite music. I realise it is getting your daughter to the hospital that is a major problem but there must be a way.
  • Richard_Scope
    Richard_Scope Posts: 2,912

    Scope community team

    Hi @kiwi_1706

    The National Autistic Society has an  Autism Accreditation award, for which the hospital is required to evidence that autism knowledge and understanding informs practice across the hospital. Some acute hospitals now employ acute liaison nurses to help staff support people with learning disabilities, and one children's hospital in the UK has employed a consultant nurse (learning disabilities) with experience and expertise in autism.

    Hospital passports (which I highly recommend putting together) are in use in a number of settings, which detail the individual's preferred communication methods, and other adaptations that will help the person to cope in a stressful and unfamiliar environment.

    There are also helpful resources such as Beyond Words books, which can help hospital staff to communicate with patients, and are recommended by the Royal College of Psychiatrists.
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