"Disabled child not seen for over 4 years"

My daughter is autistic and has learning disabilities. Prior to covid she was reviewed twice per year by her paediatrician, however she was last reviewed in 2019 and it has now been over 4 years.

In this time her old paediatrician moved to a new job and a new one took her place but has been on long term sick and we have, therefore, never met them. We have no point of contact and no way of knowing what is going on, how long we can expect to wait or how to get an urgent review  because she desperately needs to be seen by someone. For over 4 years we have been calling medical secretary after medical secretary who can only give us limited information and we have no idea whether or not it will be a month or 4 more years until she is seen again. We have never been given access to a nurse or a doctor to relay important information about our daughter's current needs.

Since covid her needs have changed significantly. She no longer attends her SEN school and has not been for 2 years due to extreme anxiety, she has episodes of violence due to her anxiety, she is struggling with hormonal changes and our lives are now significantly different as we need to juggle working from home to care for her during what were previously her school hours. She urgently needs to be assessed and her diagnosis likely needs to be reviewed, but none of this is possible if she isn't being seen. 

More recently a very helpful medical secretary spoke to the paediatricians and was advised to pass on to us that the quickest way for our daughter to be reviewed would be to speak to her GP and request and urgent re-referral. However, when they received the referral the GP was apparently told that our daughter is already on the list and will be seen when an appointment is available... 

There doesn't appear to be any management of the children most in need, no triage or assessment of risk and prioritisation... She's just being left to struggle and nobody is taking any responsibility. 

Her wellbeing and ability to participate in normal childhood activities like school have gradually been impacted over the past 4 years despite the best efforts of her school and also her GP who have all been extremely helpful but who cannot give my daughter the support, care or treatment that she currently needs. She became anxious prior to refusing to attend school and her current situation could have been managed and prevented with adequate healthcare oversight and input. 

She is soon due to begin high school and most children are starting the process of transition. We are left to figure this out somehow but I don't think she will cope with this without an urgent review and management plan for her anxiety in advance. I feel she is being set up to fail and that she will miss out on an opportunity to lead a normal, happy life, to have friends and participate like other children her age. 

Her current school have made a referral to CAMHS but this is likely to take time due to waiting lists. Meanwhile, our daughter has been under the care of paediatrics since she was 2 years old and diagnosed at 3. She has not been seen since she was 7 years old and she is now 11. There is no waiting list in this instance, she is simply not being seen and this situation has been allowed to continue because absolutely nobody appears to have the role of coordinating cases, triaging, risk management and communicating with families. 

I cannot find the words to covey how let down, angry and anxious this whole situation is making us feel as her parents. We desperately want for her to have the same life chances as other children but we have been left waiting indefinitely with no plan, no communication and no care. 

Situations like this one is why people with learning disabilities have worse health and wellbeing outcomes than their non-disabled peers. This is preventable. I appreciate that there are staffing issues in the NHS, as a healthcare professional myself, but there is no excuse for the lack of communication, for not prioritising those most in need for urgent review and for leaving disabled children to struggle indefinitely. 

Our pets receive more healthcare input than our disabled child.