Appendix 5

Parents’ Comments

I first heard about the Child & Family Clinic when our eldest son was diagnosed with Asperger Syndrome by the Consultant Community Paediatrician in May 2004, aged six. She referred him because of his over-riding anxiety and ‘ability to “behave in extraordinary ways” when things went slightly wrong’. At that time we didn’t know what to expect but hoped that some input while he was still young would be useful.

We had no information about the Child & Family Clinic and didn’t even know it was part of CAMHS or what CAMHS was.

The entire family (Mum, Dad and three sons) were initially seen by a Nurse Therapist in January 2005 at the Clinic. It was easy to find and accessible. It wasn’t a particularly friendly place. The waiting room was cramped, very few books were available for young people and the only toy was one truck. The initial appointment was absolute hell. All three children (two of whom had diagnoses of autism at that stage) were anxious and keen to get away. The noise level meant it was almost impossible to talk. (The clinic has since relocated; the rooms are nicer but the waiting area is still very limited.)
My eldest son’s care was transferred to a Child Psychotherapist in April 2005. There was no mention of any therapy for the rest of the family. It was not an acceptable timescale, being nearly a year since the first referral.
My eldest son was never seen by the Child Psychotherapist; she put intervention on hold while he underwent assessment to clarify his diagnosis at Harper House, which was confirmed in Sept 2005. Sessions with the Child Psychotherapist from September to December 2005 included only Mum and Dad. In January 2006 the Child Psychotherapist asked the Senior Clinical Psychologist to become involved and he began attending individual sessions with her from March 2006. So it took nearly two years from the date of initial referral before he received any therapy. He received several packages of therapy over the course of the next two and a half years, with little impact; his anxiety continued to escalate and he became increasingly negative. Since we had another child with autism we requested treatment at the Tavistock Clinic but were denied this. In July 2008 the psychologist requested a psychiatric opinion. Since medication and therapy were having no impact, we requested referral to the Newcomen Centre at Guy’s Hospital. Instead we were referred to Harper House, who did to their credit listen to us and refer onwards to Guy’s for Cognitive Behavioural Therapy. When the CBT programme at Guy’s came to an end we went back to our local services, who were not interested in seeing my eldest son again. Eventually, with him threatening suicide in April 2011, we requested an emergency psychiatric appointment through the GP and a locum Psychiatrist found that he had a post-traumatic stress response to early trauma. He recommended we seek private EMDR therapy('Eye Movement Desensitisation and Reprocessing) if it was not promptly available through CAMHS. So, in conclusion, the therapy provided by CAMHS over the course of several years was not useful and did not improve the situation. Neither did medication. I have never felt that any of the staff had any real understanding of my son’s issues – particularly autism – and how to deal with them appropriately. He is still under the psychiatris at the local clinic, but despite asking twice in the past fortnight for an emergency appointment since he is again having very negative thoughts about himself, I have heard nothing. The inference is that either they do not believe me, or they just don’t care.

In 2008 we became concerned about the mental health of our second son, also with autism, then aged nine, who was becoming increasingly challenging both at home and at school. We asked the Community Paediatrician for help and were told that, since we had been referred to the Child & Family Clinic as a family, we only had to telephone them and ask for them to see him. The Child Psychotherapist agreed to see him for three sessions. However, she informed us that since he put a blanket over his head and refused to engage with her, there was nothing she could do for him. There was no referral on to someone else who COULD help with these clear indications of stress and anxiety. Again, inadequate knowledge and understanding of autism.

The same psychotherapist also dismissed concerns over our third son. The paediatrician reported that he had ADHD in 2005, at the age of three, yet without even seeing him, the Child Psychotherapist said he had just learnt behaviours from his older brothers. In any case we were told that he needed to have a full-blown mental health problem before he could be seen at CAMHS – although we had originally been referred as a family. After much persuasion the psychotherapist arranged a small number of sessions with a trainee psychologist in late 2009, after which it was decreed that he had no issues. In spring 2010 the Community Paediatrician diagnosed ASD alongside ADHD. Again, inadequate knowledge and understanding of autism. In fact the paediatric team themselves said there was no point in referring Sam to the local clinic since professionals there would have no idea how to support him.

I DO NOT feel well supported by the CAMHS service. Whenever I have tried to contact the service in recent years I have found it next to impossible to speak to anyone. My calls are never returned. My best bet in the current situation, with my son again having negative thoughts about himself, is to go through the GP and ask her to contact them. I have, in the past, had the opportunity to speak to the therapist without my son being present but it has not helped.

Roma Mills Page 1 10/06/2012