"Feeling let down by a lack of support"

I am writing to express our profound disappointment and stress caused by our experience of CAMHS services.

As a family we have been involved with CAMHS for over 2 years. Our daughter a diagnosis Autism Spectrum Condition (ASC), PDA, (Demand Avoidance) developmental trauma, lingering PTSD from a car accident and heightened sensory difficulties, and overwhelming anxiety. She has sensory sensitivity disorders, and overwhelming anxiety with dark intrusive thoughts, incidents of self-harm, including suicidal thoughts

We moved from CAMHS Glasgow North (GN) to North Ayrshire CAMHS (NA). Our care coordinator and Family & Systemic Psychotherapist organised the transfer of care.

Since moving we feel we have had a minimum of help, with a protracted wait for our daughter to even be assigned to an appropriate Team for support (still undecided), one year on and after I requested she be reviewed for medication due to anxiety, depression and potential for self-harm, the NA team were adamant that our daughter had to be engaged with directly (not through her parents). This failed. Last week I was called by the nurse and informed that NA had decided to discharge her.

She has been seen for under 5 mins by a NA psychologist, aside from that all communication has been via nurses. I have still not received a call from the team lead.

I believe that our daughter needs to be reviewed by a psychiatrist, - not discharged due to being unable to engage.

It took us three years to have our daughter seen initially by CAMHS, watching our child go through her a complete breakdown. We will not allow NA CAMHS to put her back to that state.

6 months after transfer of care sent from NG, we were told a nurse would be supporting us until a meeting of the NA professionals.

I questioned this as my daughter's needs are extraordinarily complex, and it takes a great deal of experience to understand nuances of what is involved. We requested another professional who may help my daughter through us as parents (as she can’t engage due to her anxiety), I was told this is not something that is offered, that she would need to engage herself (despite having engagement difficulties comprehensively set out in the letter of transfer and fully documented in a CAMHS Formulation, compiled by four professionals), and to look at charities. We were told we had to wait for the meeting to determine where to place my daughter in terms of her care – 8 months after transfer,my daughter’s mental health was getting worse.

My daughter was having dark thoughts, depressed, mostly non-verbal, multiple panic attacks and repeating daily how sad she felt.

I asked the CAMHS team to consider some low-level antidepressants / anxiety medication for her to help her to engage with people /therapy, or even just leaving the home with her parents, to bring more positivity and lessen her anxiety.

Our meeting with professionals was postponed.

The nurse told us that a psychologist and nurse would come for a home visit and then the nurse would come regularly and try to engage with my daughter directly, to assess the need.

I felt that they would not listen to us, that speaking with family members is difficult for my daughter, or that of professionals in NG about her anxiety and difficulties with social interaction.

The psychologist and nurse came for 40 mins, adding a stress element to the meeting. My daughter managed to come out of her room for a few minutes to lead the pair to show them the ponies in the field, she walked ahead of them without interacting.

The nurse next came with a trainee –with no advance warning. This is no good for any autistic child. She spoke briefly to the nurse - too anxious to engage in any other way.

None of this was a surprise. We had told them that she cannot engage – hence the request for medication, to help her engage!

I cancelled a meeting because our daughter had sprained her ankle. So the usual way of enticing her– to see the ponies – would not work. I explained this and was told NA would have a meeting to discuss the situation, given my daughter's difficulty with engaging directly.

I had a call from the nurse, who said they had had a meeting and were going to discharge our daughter due to her failure to engage.

I have asked to speak with a psychiatrist, I have also requested the reasoning and decision in a letter, so far, we have received nothing.

The devastation caused through our whole family is frankly gut wrenching. I believe that an adult presenting with this kind of anxiety would not be discharged. They would be offered alternative treatment.

Where is the alternative plan for my daughter? What if she was fully non-verbal instead of selective mutism? Or too young? She is a child. All her therapy has been through us, her parents, after receiving advice and then feeding that back to her. She is too anxious to engage, but where is the professional assessment from a psychiatrist for medication to help her cross such a huge barrier?

In addition, if my daughter is discharged, she will not receive the aid required with Speech and Language – who we are working with now.

I feel that our daughter is being failed.

How much energy is taken simply fighting, for my daughter, for her rights? What happens when society turns their back on the most vulnerable, a young girl? It is well documented: depression, suicide, eating disorders, increased sense of failure, addictions, looking for validation from inappropriate sources. They stop trying, anything, anymore. Internalised shame.

It is an accepted and peer reviewed fact that autistic people are at a higher risk of suicide than non-autistic people.

We will not allow our daughter to slip away or become a statistic just because she could not engage with someone over the course of 3 or 4 meetings.