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No help expected even if she is seen

Posted By Noble117

"No help expected even if she is seen"

About: Lothian Community Services / Autism Assessment Service (Children and Young People) Lothian Community Services / CAMHS Community Teams

(as a parent/guardian),

My child has been on the neurodevelopmental waiting list for three years. In that time her mental health has deteriorated to the point where she is suicidal. Despite this, we and her school have had multiple requests for additional mental health support rejected because she is already on the ND waiting list. We are told she will be seen in due course and there is no support they can offer in the meantime. When I called the ND team to see how much longer she might have to wait, I was told there is no "waiting list" as such; instead the clinicians select patients based on clinical need. 

I fully appreciate the NHS is in crisis and they have to carefully ration services. However, we know several other families in the Lothian area whose children have been seen for ND assessment within months rather than years, despite being referred after our child and having no additional mental health or behavioral concerns. 

At this point I suspect that they won't see my child for ND assessment because everyone involved already agrees she is autistic. She's apparently not "autistic enough" to meet the threshold for any specific support in that area so they see no value in formal diagnosis, but because she's already on that list no-one is willing to see her about other mental health conditions in the meantime. So she'll be stuck on that ND "not-a-waiting-list" indefinitely, with seemingly no help expected even if she is seen, and no other help offered for additional mental health concerns available until she seriously harms herself. I don't have the energy to be angry. I'm just scared.

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Responses

Response from Mariska Vernon-Stroud, Patient Experience Team Lead, Patient Experience Team, NHS Lothian last month
Mariska Vernon-Stroud
Patient Experience Team Lead, Patient Experience Team,
NHS Lothian

I gather feedback from patients to recognise good practise and supporting improving services in NHS Lothian.

Submitted on 04/09/2025 at 13:50
Published on Care Opinion at 13:50

Dear Noble117,

Thank you for taking the time to share your story. I am sorry about the very long wait your child is experiencing and the impact on them and on yourself.

Due to the anonymous nature of Care Opinion, it can be hard to know the full details of your experience to give you specific direction on where to find support and treatment that may improve your child’s mental health and wellbeing. Here are a few sources of help that may be places you can reach out to.

In relation to the waiting list for an autism assessment, NHS Lothian operates a neurodevelopmental waiting list and children and young people are allocated to assessment in date order. Some young people may be seen out of order according to clinical urgency, but CAMHS works to strict prioritisation criteria that must be met for this to happen. We are very sorry for your child’s very long wait; we do experience a very high demand for autism and other neurodevelopmental assessments which is the cause for your wait.

Being on a list for autism assessment should not automatically prevent someone being seen for their mental health, either by CAMHS, if that is necessary, or through support from a variety of sources such as schools, social work and voluntary agencies. A formal NHS diagnosis is not required to access these supports. Families can contact their GP if they have urgent concerns regarding their child or young person's mental health or, in an emergency, contact NHS 24 and I would urge you to consider these avenues and speak to someone about your ongoing concerns and difficulties.

If you would like us to look into the difficulties you have experienced accessing services, please contact the Patient Experience Team to provide your personal details. You can contact the team by telephone on 0131 536 3370 (Mon-Fri, 9am-2pm) or by email on LOTH.feedback@nhs.scot

I realise this response may not offer you an immediate solution, but I do hope that this offers you some possibilities of moving forward towards accessing the right support for your child.

Kind regards,

Mike Reid

General Manager, REAS, NHS Lothian

(Response posted on Mike's behalf)

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