"Sensory Processing Difficulties"

About: Perth Children's Hospital

(as a carer),

My child was diagnosed several years ago. Life started getting easier at home but I feel it's not getting any easier in Perth Children's Hospital. We are exhausted from giving constant verbal handovers every day. It seems we are met with defensiveness and defiance almost every day because of it. 

I thought our biggest issue to date was the fact it wasn't being handed over that our child has Autism Spectrum Disorder and SPD, but it's becoming painfully more obvious every day that I believe, not many people know what it means, nor do they know how to care for my child or speak to my child.

I keep hearing that no two people with autism are the same. I feel all children would benefit from some pointers, but more so our sensory kids. Things like:
- not being woken up so abruptly all the time
- not waking up to PCA's changing their bin (which I feel almost sounds like a clap of thunder in the room)
- people entering the room quietly
- asking which dressing they prefer (regulars who have infusaports for example)
- asking if you "can have a look" at or "can I touch your - (e.g. arm)".
- and the words "it's just" need to be banned from hospital vocabulary in my opinion.
- "It doesn't hurt" - Be honest, say it's kind of like a mozzie bite that goes for one second.

Of course, you can't tell a toddler "It is essentially 'just'" - they won't understand. Teenagers, in my opinion, are definitely affected by so many years of, it's just an ultrasound.

My child has been told, "it's just...", "It won't hurt...", "this will work...". I believe my child is psychologically scarred by the classic medical rhetoric. My child now says everybody lies and asks why does everyone want to give them pain. You can't simply explain to them that no one means to, and everyone means well. Everyone that touches my child inflicts pain on them right now. It is so hard for someone with receptive and expressive language delays to 'just get used to it' and to hear that 'they'll get used to it' and 'they're an adult now'.

I believe my child feels like they don't receive compassion and empathy now because they're an adult. I have put in feedback about this months ago. Ward Profiles and Sensory Profiles are rolling out in November! We need action now!

Thank you.

Responses

Response from Katie McKenzie, Executive Director Nursing Services, Child and Adolescent Health Service - WA 4 weeks ago
Katie McKenzie
Executive Director Nursing Services,
Child and Adolescent Health Service - WA
Submitted on 14/07/2020 at 13:30
Published on Care Opinion at 14:35


picture of Katie McKenzie

Dear aquilakj34,

Thank you for providing your valuable feedback. I am very sorry to hear that your experience at the Perth Children’s Hospital has not met your child’s needs, and in particular, that we have not consistently shown compassion in the way that we have delivered care, which is one of our core values.

We are mindful of the particular challenges children with autism and sensory processing difficulties can experience in the hospital environment, and have a range of targeted supports in place. One of these is the Keeping Kids in No Distress (KKIND) service. KKIND works closely with parents and children to develop patient profiles and a care plan to make a child’s hospital experience easier, and also provides training and coaching to staff. Please speak to your treating team if you are interested in finding out more about this service.

As your feedback so clearly describes, there is still more for us to do. We are in the process of undertaking a number of additional improvement activities across the hospital that will help us to address the concerns that you have raised. This includes conducting a review of our hospital admission paperwork, which will strengthen the way that we gather useful information about patients before we provide care and help us to better determine any specific care or environmental requirements that staff should be made aware of.

We are also in the process of reviewing our approach to the way we deliver child and family centred care, how we communicate with our patients and families, and how we educate and train our staff on these aspects. I will speak with the team developing this work to ensure that they cover the general principles for providing care to children with sensory processing difficulties as part of this review.

I would like to invite you to have the opportunity to get into contact with our Director of Allied Health, Emma Davidson (Emma.Davidson@health.wa.gov.au) to further discuss your child’s experience in the hospital and input into how we can better meet the needs of children with sensory processing difficulties.

While we do endeavour to tailor the services we provide to meet the individual needs of our patients, the feedback you have provided is vital for us to improve the way we do this. If you have any other specific concerns about the care provided to your child, please feel free to contact the Consumer Engagement team on 6456 0032 or email CAHSFeedback@health.wa.gov.au.

Kind regards,

Katie McKenzie

Executive Director Nursing Services

Child and Adolescent Health Service

  • aquilakj34 thinks this response is helpful
    {{helpful-1}} other {{helpful-1 == 1 ? "person thinks" : "people think"}} so too

Update posted by aquilakj34 (a carer)

We have used the KKIND Service many times. Buzzy 4 Shots worked for my child the first time we used it. I feel it would be great if Buzzy was used more for young patients to reduce fear and anxiety.
Unfortunately for us the service just doesn't work. I believe Registrars and Residents need to be informed as to what this service is for.
I also believe it would also be beneficial if Doctors received training specifically for Sensory and Behavioural kids.

In my opinion:
3-4 nurses holding a child down = trauma for the child
Repeat unsuccessful access = trauma for the child
Repetitive trauma year after year = iatrogenic anxiety.

I will gladly email Emma my ideas in the hope it helps all patients in the future.

Thank you

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