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"Failure to help our daughter, aged 11"

About: NHS Greater Glasgow & Clyde / Child and Adolescent Mental Health Service (CAMHS)

(as a parent/guardian),

I am writing to you to highlight a lack of mental health support and help for our daughter.

Our daughter is 11 years old. We as parents had noticed a few years ago that she displayed certain traits that raised concerns and after researching concluded that she exhibited clear defined signs of Asperger's Syndrome / ASD.

We were referred by our local GP in 2019 and received an initial appointment a few months later with a nurse as part of the assessment phase, we were advised that she agreed that our daughter fitted the profile of potentially being on the spectrum and we would now be put on the waiting list for diagnosis.

During the first lockdown my daughter suffered increased anxiety, being an only child she was isolated and it was extremely hard for her. Her autism, entwined with anxiety increased in symptoms.

This severely affected my daughter's mental health and set her way back in comparison to her peers and school. Despite repeated requests, we feel there was no school work or effort made by the school due to my daughter not having an official diagnoses and we as parents were treated as overly concerned parents as they said she was fine in school, despite us explaining she was masking.

She transitioned into primary six in August and managed 1-3 days a week of school, due to anxiety, separation anxiety and stress leading to poor sleep and health, depression and school refusal. Still we received no help from the school or CAMHS.

Second lock down in January and schools closed again, winter, children not going outside created the perfect storm for her, her anxiety increased her stress and worries all increased with COVID and lock down put her mental health in a spiralling downward slope. She was having multiple panic attacks daily, refusing to wash, barely eating, her sensory issues were off the scales, her nightmares and inability to sleep increased. She says she just wants to die, that she’s sad and doesn’t know why. She is depressed. At ten year old she wanted to kill herself. She has run out of the house, a moving car down the street or when stressed hits her head against a wall repeatedly.

The only thing we could do was remove her from school all together (removing the main stressor) for her mental well-being and at a waiting time of 95 weeks for diagnoses within CAMHS we begged and borrowed the money to have her assessed privately (£1500 for a family on benefits at that point).

This helped with school as they were harassing us and not willing to understand that she was suffering – why, because until then we were still waiting for the NHS to help us.

Through her sessions with a private therapist it has come to light that she has profiles of PDA and ADHD as well as the ASD she was originally diagnosed with. She will rarely leave the house, has full blown panic attacks where she cannot breathe, will not be in a room alone the whole family have now been sleeping in the same room for months (we are still waiting for a sleep referral made over 70 weeks ago). She continues to be terrified of any flying animal (except birds) so barely manages to get out with the dogs, and if she does I end up carrying her or she clings to me. She forces herself out of the house with me because cannot bear to be apart from me at all, for any length of time.. If she needs the toilet, I must go with her. She pulls her hair out in clumps at the smallest worry. Any illness she hears about sends her into a panic. Socialising is exhausting, even seeing her cousins fills her with anxiety that is paralysing. Her sensitivity to paper has increased, this includes paper straws, toilet paper (we make washable toilet cloths). She is scared of us leaving her. She barely washes, brushes her teeth or trims her nails. She is easily distracted, needs to move constantly and… her world is shrinking daily, she is lonely and feels she is not understood.

Her father and I do all we can, read, joined parent groups but do not possess the specialist skills needed to help her. We are both on anti-depressants. Her father has attempted suicide. Our family is being torn apart. Following a complaint we made we had a call from an occupational therapist 5 weeks ago, who tried to tell me that they didn’t think CAMHS was a suitable fit for her at the moment, that we should see an OT, that they would chase the sleep referral and also refer us to the Strathclyde Autistic Society. Also if I sent in the private diagnoses report that she would verify it. I pushed for her to see CAMHS. She needs to see a psychotherapist and potentially have therapy with medication. We have heard nothing since.

With the NHS failing to see my daughter, she has missed essentially a whole year of school, has become increasingly isolated and has anxiety issues that are heart breaking to watch.

We have been put into debt to pay for private treatment , I had to stop being my husband and daughters carer and forced back to full time work which has put a tremendous strain on our family, as my husband is disabled retired.

We would like to see my daughter grow up to be the vibrant happy person she used to be, not another statistic of those we lose, and we do lose them, without appropriate help, all too often girls lose their lives through chronic depression, eating disorders, miss-understood melt-downs.

We know early intervention is key to a happy long life. Our daughter needs professional help and she needs it now, as she develops her sense of self, before her world shrinks further and her autism, anxiety and depression impact her further and for longer.

Responses

Response from Paul Hayes, Patient Experience & Public Involvement Manager, Patient Experience Team, NHSGGC last week
Paul Hayes
Patient Experience & Public Involvement Manager, Patient Experience Team,
NHSGGC
Submitted on 20/07/2021 at 16:39
Published on Care Opinion on 21/07/2021 at 10:57


picture of Paul Hayes

Dear tryingourbest, my colleague Beth has asked me to share the following response on their behalf in the hopes that they can help you.

Thank you for taking the time to share your story. I am sorry to hear of your lack of support from services and how distressing it has been for your whole family. It would be helpful if you could provide me with some additional details. Would you be able to contact me on 0141 277 7475 with your child’s name and date of birth so that I can look into this further?

Kind Regards

Beth Wiseman

Specialist Children’s Services Manager

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