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Lack of planning for neurodiversity

Posted By Eliqg86

"Lack of planning for neurodiversity"

About: Mid-Ulster Hospital / Children's Eye Unit

(as a parent/guardian),

We had a paediatric ophthalmology appointment for 9.30 on a very snowy day. Journey time via Glenshane is usually 40 minutes and we allowed plenty of time arriving 9.15. Waiting room was packed and a few crying babies.

My son is ASD and struggles with noise. We were not seen until 10.25 after I asked when we would be seen. Myself and  number of other parents had to repeatedly ask how long we would wait. No one kept us updated why or how long delay would be. We could have gone outside as my son uses his energy to manage the noise and small cramped spaces which leaves little for the appointment.

There were a number of parts and we were moved from room to room at one point running about to find a free room.

One part of the test could not be carried out due to ASD sensory issues. Professionals knew he was ASD prior to appointment. Why was there no thought how to carry this out or planning with parents so that the waiting was planned and managed and the most difficult test first when anxiety was lower?

The nurses and consultant we saw were lovely and patient and tried their best. But there is a discrimination in the lack of planning for neurodivergent people. We rightly have to create access for physical disabled and why not hidden disabilities?

We felt worried that inability to carry out tests could mean problems are missed.

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Responses

Response from Peter Johnston, Lead Nurse - Womens and Childrens Nursing, Northern Health and Social Care Trust 2 months ago
Peter Johnston
Lead Nurse - Womens and Childrens Nursing,
Northern Health and Social Care Trust

Submitted on 04/02/2025 at 16:55
Published on Care Opinion at 16:55

Dear Eliqg86

My name is Peter Johnston and I am the Lead Nurse with responsibility for Acute Paediatrics which includes the Paediatric Ambulatory Department in the Mid Ulster Hospital. I would like firstly to apologise for my late response as I have just returned from leave.

I am very disappointed to hear of your and your child's experience of care though I think that it would not have been in our specific department, I have spoken to the staff in the opthalmology department and will redirect this 'care opinion' to their manager. I hope that they will be able to respond more positively

thank you

Peter Johnston

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Update posted by Eliqg86 (a parent/guardian)

Thanks Peter, I have no doubt there was any intent. Everyone was busy and polite its the bigger picture for our chikdrens health needs

Response from Katherine Shirley, Consultant Ophthalmologist and clinical lead for paediatric ophthalmology, Paediatric Ophthalmology, Belfast Health and Social Care Trust 2 months ago
We are preparing to make a change
Katherine Shirley
Consultant Ophthalmologist and clinical lead for paediatric ophthalmology, Paediatric Ophthalmology,
Belfast Health and Social Care Trust

Submitted on 10/02/2025 at 13:56
Published on Care Opinion at 14:26

picture of Katherine Shirley

Dear Eliqg86,

My name is Kate Shirley, I am the consultant lead for the paediatric ophthalmology service and I am sorry for the delay in my response. As Peter said we are actually a separate service from the paediatric ambulatory unit so it had not immediately come to my attention until this week.

Firstly, I would like to sincerely apologise for the experience you and your son had while up at our clinic. I know how stressful it can be getting to these appointments from quite a distance and the delay and conditions of your wait must have been very challenging for your son.

I appreciate you taking the time to feedback to us, as it really will help us shape our service for all patients.

Unfortunately, due to the pressures of the waiting list on the service we have been trying to increase the number of patients that can be seen. I have been monitoring this as I am acutely aware that the draw back may be the impact on patient experience.

Your feedback is very helpful in this regard and I plan to raise this at our team meeting this month. An option that we will look at is to offer patients with sensory issues their own allocated room and each team member comes into them.

To address your concerns regarding communication and order of the tests. Unfortunately, the tests often need to be carried out in a specific order due to the clinical need. A tracker is completed ahead of time to ensure only the required tests are performed for each patient and the clinician will indicate if these should be done in a specific order. We are aware that this can be time consuming and overwhelming for some patients.

I will discuss this with our reception staff and if a parent raises any concerns at check in, they should bring this to the attention of the nursing team. A quick conversation with parents can highlight any specific concerns and we would be happy to tailor the visit for the child’s needs as much as possible. We can flag this on the child’s chart so future visits can be similarly adapted. I agree that updating those waiting during their visit is very helpful and we will endeavour to do this.

Again apologies for your unsatisfactory experience and I do hope that we can improve this for yourself, your son and all our patients in future.

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