"An important and long awaited appointment with an adolescent psychiatric service"

Recently we had been invited by letter to attend our local hospital with our son to review his recently started use of Risperidone. He is 15 , has severe autism and has had a truly awful last year due to emotional and mental breakdown and self harming. He is nonverbal and has cognitive impairment.

We sought help through our GP , the local A &E and the QEUH in Glasgow. All of these services were by their own admission not equipped to help us and beyond some very limited sedatives could do nothing. Our GP , having witnessed our son in breakdown sought adolescent psychiatrist support and several weeks later we were seen at Dunoon hospital by a child psychiatrist. This was a breakthrough as we had been seeking this for several years.

After first appointment, we were given proper access to sedation and discussed long term meds. A few weeks later we saw the psychiatrist again and decided to try Risperidone at their suggestion. The psychiatrist when asked by us stated that they were leaving the post, In itself a shock but that another specialist would have to review the medication in a month’s time. Although disappointed we were not hugely surprised as there has been nothing in place for years now. Our son started the meds and there had been improvements as well as concerns and questions.

We received a letter with a new appointment at Dunoon hospital with another doctor, who was not a psychiatrist. The letter was from the Cowal and Bute CAMHS team based at the hospital. We eagerly anticipated this review making considerable changes to our son’s routines to allow attendance and we spent time and effort preparing a written update and concerns and questions we wanted to ask. It takes lots of efforts to get our son to even go into the hospital, but we managed and arrived at reception 5 mins before our appointment as requested.

We were directed to the waiting room that we had used with the previous appointments within the main hospital but no one arrived and a nurse from another clinic told us to go back to reception with our letter. We were then directed to the CAHMS unit at the back of the hospital. It appeared that the reception was being observed by a person sitting in a car outside?

The unit reception itself was in darkness with no one at the desk. We rang a bell before the person from the car park came in and without ID asked us what we were doing? Just then someone else came to the door, looked surprised and told us to go into the empty waiting area while they took our letter to investigate. We asked about the Doctor we were supposed to meet. No one seemed to have heard of this person, and certainly had no knowledge of them having appointments there.

By this time my son was restless and I was feeling anxious and frustrated also. Left for 10 min I rang the bell again. It was now 30 minutes into our scheduled one hour appointment, an appointment of great importance to us, but beyond irritation from the reception staff no urgency was shown. I explained to another person that we needed to know what was going on and that my son was autistic and becoming restless. I was told they were phoning reception at the hospital as the meeting was not there!

I stated that I would simply like our letter returned and would myself go back to reception. We had now been at the hospital for 40minutes and been to 3 locations. Before we left the cahms reception we were told that the child department was at the other side of the small department we were in. it was very hard to hear the person through their mask but they did indicate we should go round to the other door, despite it being accessible through a glass door. We went around only to find the door locked and no answer to the buzzer. We could see the person who had sent us here 10 yards away through a glass door. They were ignoring us . I knocked on the door and shouted through a couple of times HELLO CAN YOU HELP US PLEASE.

Eventually the same member of staff came through and abruptly told me that there was one CAHMS ’worker’ in but they were busy with a client. I requested that this worker be summoned for a moment to shed some light on our plight. When I persisted I was told they were on a zoom call and would not come out to even speak to us. The member of staff was becoming more irritable towards my insistence of some answers.

Even if the worker was speaking to someone, I felt my son surely had the right to a response or explanation? We got no further response and as my son was upset we left, ourselves upset and embarrassed further from the nasty glares from nursing staff who had found time to observe our plight.

I called at main reception on the way out and asked for a feedback form but they had none apparently. I have the letter with all the appointment details but no idea where to go or what to do next. Our son is supposed to have blood screening while on this medication and a dosage review was, and remains urgent and CAMHS have failed to follow up or answer their phone. We have lost all confidence in them and their culture of hiding behind security doors and reception staff.