Hoping for change

On the 26^th of September 2017 there was a meeting between two people from Barnardo’s Cymru and three former Child and Adolescent Mental Health Services (CAMHS) current Adult Mental Health Services (AMHS) users, 1 male 2 female, aged between 19 and 22, and their Barnardo’s Cymru support workers. The aim of the conversation was to discuss their thoughts on and experience of CAMHS. They spoke about CAMHS and the transition to AMHS. This is a report about their experiences.

Even though their stories are very different and their opinions on the services vary, they all agreed on the fact that the transition from CAMHS to AMHS is scary. They didn’t know what to expect and felt CAMHS wasn’t pro-active in telling them about this. They pointed out that when they turned 18, they were expected to have become adults overnight, while actually they felt like they were jumping off a cliff edge. Also, they felt there are a lot of cultural differences between CAMHS and AMHS: some of them felt that with CAMHS they were the leader in the process, while in AMHS they have to follow strict rules and feel less included.

One member of the group has experienced CAMHS in both England and Wales, and feels there is a difference in quality between the services in both countries. In England she experienced not feeling heard, whereas in Wales she was pleasantly surprised that her psychiatrist actually listened to what she was saying. The psychiatrist that she was seeing at that time worked on their relationship a lot, which she appreciated. When it comes to counselling, she values the relationship between her and her psychiatrist highly. Overall her experience with CAMHS was good because she felt in control and included in the process, but when she reached 18 she was told to “go with AMHS or don’t have anything”.  Now that she is in AMHS, she feels less included in the process and the last time she saw her psychiatrist was one year ago.

Another member of the group had issues with her initial CAMHS worker and feels that she could have received better advice from her mother than from him. She was really unwell at the time and felt that her CAMHS worker didn’t see that, which affected her wellbeing for the worse. She was told she didn’t fit into the AMHS criteria and at one point the CAMHS workers tried to convince her she was better, so she didn’t have to see anyone else. She wasn’t referred to AMHS until she specifically said “I am very ill, I really need the help and want to get referred to AMHS.” She feels other young people might not have the guts to say that, and worries that they might not get the help they need. Overall she felt excluded from the process and her experience with CAMHS has not been good.

The third member of the group has been involved in a number of reviews of CAMHS over the last four years. He is still pointing out the same issues because he feels that nothing has really changed. He was referred to AMHS before he turned 18, and has met with an AMHS worker once. Because he had already been referred to a London based gender identity clinic, the AMHS worker didn’t know why he was there and felt that they couldn’t do anything more for him.

Another issue that all members of the group agreed on is medication. Some of them were taken off medication that had been working well and received different medication which appeared to work less well, because the medication that they had been on in CAMHS was no longer covered in AMHS. The group felt this might be a budget issue since the replacement medication was cheaper. However, a sudden change in medication has had serious effect and should be considered more thoroughly.

The group pointed out that each time they went to see a doctor, it was a different one. They all agreed that this isn’t helpful at all because each time they would have to start over again. They felt like they were just telling their story again, without making any counselling progress.

The group pointed out that the waiting time for referral to CAMHS is another issue. They talked about how long they’ve had to wait before their referral got picked up. The referrals got picked up relatively quickly; it varied from two to six weeks. However, a waiting time of three to four weeks was way too long for one member of the group, given the state of wellbeing she was in. This particular member of the group often wondered “Why hasn’t anything been done yet?” Because this was a time of crisis, her mother had to make calls constantly to make sure her daughter would get the help that she so desperately needed.

In their opinion, there is very little communication between CAMHS and AMHS as well as no communication between young people and AMHS. The Barnardo’s team has tried to help the young people as much as they can to make the transition from CAMHS to AMHS less scary, and all members of the group seemed to really appreciate this. For them it would be a good idea to have someone that they know to stand by them during this period and a small period into the transition into AMHS. The group also talked about calling the emergency services; one member of the group mentioned the intention of calling the emergency services at least once and another member of the group said that she had already called emergency services six times. The group talked about having an ID or a personal reference number with emergency services, and one member of the group mentioned that she has a personal number to call if she needs police support. Also, the Gwent Police 999 has a mental health professional in their team, which the group was positively surprised with and very supportive off. They would suggest emergency services having a mental health professional as well.

A service that covers the gap between both services and helps young people with issues around transitioning from CAMHS to AMHS would be the blue box in the figure below.