When my son started secondary school, he was a confident model pupil, winning Outstanding Achievement awards and he was popular with his peers. In Year 9 he began to suffer daily and continuous put downs from his peers. This was witnessed by other students and teachers too. The school’s way of handling this, rather than to deal with the bullies, was to isolate Bailey even more by placing him in an alternative provision unit to learn. Since then, Bailey had a negative attitude to his education and become more introverted. He couldn’t wait to leave school and have a fresh start studying his passion, Music Performance, at college.
In October 2015, on a Friday evening as I was leaving work, I received a phone call from the Counsellor at Bailey’s college. She told me that Bailey’s tutors had noticed a change in his behaviour and presentation and were concerned about him so they had referred him to her. Bailey shared with the Counsellor that he was experiencing hallucinations and thoughts that were frightening him and he thought he was schizophrenic. This was a shock for me as I had not actually noticed any change in him and his tutors had not shared their worries with me. I actually laughed in disbelief. The Counsellor advised me to contact my GP to get a referral to CAMHS. I did this immediately after getting off the phone to her, only to be told that we could not have an appointment for 3 weeks.
I then went home and attempted to address what I had heard with Bailey. He point blank did not want to discuss it, he became very annoyed, stomped to his bedroom and slammed his door. I think this may have been the point when I realised that I was living with a stranger. Whilst it may seem like ordinary teenage behaviour, our home is always very calm, with very little conflict. Bailey had always been very respectful towards me so this kind of behaviour was not something I was used to. For many years it has just been me, Bailey and his older brother, Josh. We’re very close and super supportive of each other. Josh had recently left home to study at university 150 miles away. Josh has a loud, bubbly personality so immediately the house seemed so quiet and empty with him not there. I found it very difficult, I didn’t even think how Josh not being around may have been affecting Bailey. When I realised this, I felt an immediate serge of guilt! When I thought about it, Bailey had changed over those weeks. He was very isolated and spent most of his time in his bedroom. His presentation had deteriorated. He was still as obsessive as he had always been about his personal hygiene routine but he would wear the same clothes for weeks and he hadn’t had his hair cut for months. But, although it was a change in Bailey, it all seemed like a normal phase for a teenage boy to go through. More guilt. That night Bailey left me a note apologising and explaining that he found it difficult to talk about.
The next day I told Bailey we would find him someone he could talk to and get him the help he needed. I was hurt that he felt he couldn’t talk to me but I didn’t want me pushing him to do so to cause him any distress. That evening Bailey reluctantly came out with my sister and me to watch a band. I could see he felt uncomfortable so we left as soon as the band finished and got some food on the way home. I’m unsure what caused it but there was a confrontation between Bailey and I, which resulted in him throwing his food at me and storming off. Again, this was not behaviour I was used to from Bailey. I was so concerned about him but at the same time I was frightened of him. Fortunately he had gone straight home. I explained to him that I did not want to be alone with him behaving that way so he spent that night at my sister’s. That was a hard decision as I didn’t want him to feel like I didn’t want him around but at the same time his behaviour was so unpredictable, I was frightened of him.
We couldn’t possibly wait 3 weeks to see the GP now so we had made a plan for my brother in law to take Bailey to our local mental health ‘drop-in’ centre after the weekend. They were turned away by the drop-in centre who advised them to go to the ‘Acute in-patient’ centre. We all went there together. Bailey was taken for an assessment. After they assessed him we were told that they couldn’t treat Bailey because they were adult services and he was under 18 at the time. They gave us a telephone number for the CAMHS Crisis Team but said that Bailey had shared with them that he was having suicidal thoughts so we should think about taking him to A&E, and on that bombshell they sent us on our way. My brother in law telephoned the CAMHS Crisis Team and discussed our situation with them. They did a telephone assessment and safety plan with Bailey and said they would send someone to see him the next day.
The next day, two lovely young ladies from the CAMHS Crisis Team came to do a face-to-face assessment of Bailey. He spoke to them on his own and he shared with them that he was seeing dark figures and hearing voices. He wasn’t sleeping and was feeling paranoid. He said he had experienced these symptoms for about a year but they had recently become more frequent. CAMHS explained to us that Bailey was experiencing psychosis, I had very minimal knowledge of what psychosis was, but it was too complex for them to treat so they were having to refer him to another agency for another assessment. He was referred to the Early Intervention for Psychosis Team so we waited for an appointment with them.
The appointment was arranged really quickly for three days later. It was a joint appointment at our home with CAMHS and the EIP Care Coordinator so that Bailey wouldn’t have to go over the same things again. The Care Coordinator explained that he would be under their care for 3 years and he would see a Psychiatrist. I was relieved that we had managed to get this support in place but so worried that Bailey was, and had been, so unwell without me realising. Another wave of guilt.
Navigating around mental health services to find the appropriate one is a difficult and lengthily process which would benefit from being reviewed to make it easier. It’s like you need a diagnosis to know which sector of the service to access but you can’t get that diagnosis without being referred to the service and you can be waiting such a long time for appointments. I think people suffering mental health conditions who are searching for support could find it incredibly disheartening and the stress of it could in fact make their conditions and symptoms worse. Bailey was fortunate that he had people around him to help him with it, but not everybody does and that worries me.
We had regular appointments and contact with the Care Coordinator but we were waiting over a month to see the Psychiatrist. In that time, even with the support in place, Bailey’s condition worsened. He became incredibly irritable and, at times, aggressive. One time resulting in us having another visit to acute in-patient centre, as it was then in Bailey’s Care Plan that he could access care there in a crisis. They again sent us away due to his age. At this point he was very reluctant to attend college and when he did he was demonstrating defiant behaviour. He absconded a few times from college, which college staff failed to inform me of so the Care Coordinator arranged a meeting with them so that they could gain an understanding of Bailey’s condition and needs in order to keep him safe. He had missed a lot of college and had fallen behind with assignments so I wanted them to understand just how unwell he was.
The appointment with the Psychiatrist went well and she discussed medication options with Bailey. She suggested antipsychotics. Bailey decided to give them a try. They almost immediately helped him to sleep better and, with Josh home for Christmas too, we were starting to see an improvement in his mood. Bailey was also referred to a Psychologist for CBT to manage his symptoms. Bailey has always accessed every bit of support offered to him. He really wanted to get better and by the end of that first college year he had managed to catch up on his assignments and pass them.
In Bailey’s second college year he was placed as the guitarist in a band and as part of their music course they had to compose, record and perform songs together. They called themselves ‘Tide’ and they sounded really good. I remember the first time I saw them at a college gig and thinking that they had really good chemistry. Most importantly, Bailey seemed really happy and, for the first time in ages, he had enthusiasm for something. The band started getting booked for local gigs and festivals, and we somehow even managed to blag them on to the guest list at the Foo Fighters Cheese and Grain show in Frome, which gave them a huge boost! They were getting quite a lot of radio play and were chosen to support UB40 at a local festival too. Bailey had also found himself a lovely girlfriend. So, in the space of a few months, things had really quite dramatically turned around for him and everything was going amazingly well.
One thing I have observed at some of the gigs the band played is that there is lots of free alcohol available to them. Sometimes it would be the only payment they received. Fortunately, Bailey isn’t too fussed about drinking but I can’t think of any other profession or industry where it is actively encouraged for you to drink alcohol while you work! I appreciate that some of the independent venues have financial struggles but paying young musicians in alcohol is pretty unethical and, for some of them, dangerous.
Whilst the band has had a positive impact on Bailey’s recovery, the politics involved still causes him stress and anxiety at times, which worries me. I guess that happens in most bands when there are several people with different personalities, views and ambitions. He seems to manage it quite well though.
In August 2017 we attended the 53 Degrees North Music Conference in Hull. Mark Richardson was there representing Music Support and this was the first we had heard of the charity. We attended the mental health discussion and, being a Skunk Anansie fan, Bailey plucked up the courage to approach Mark afterwards. This was the first time Bailey had openly discussed his condition with someone new. We’ve both been following the charity closely ever since. I think it’s great to have an organisation to support people specifically in the music industry.
A couple of months ago, Bailey suffered a relapse. I had literally been gushing only a few days previously about how hard he had worked to recover and how proud I was of him, so it came as a big shock. Bailey had found himself in a situation where he was experiencing emotions that he had not felt before. This sent him into crisis and he was sending his girlfriend worrying messages. He was missing and wasn’t responding to phone calls or messages from anyone else. There was a police search and he was eventually found on some rocks at the beach. The Coastguard brought him to safety but he was immediately arrested and sectioned for his own safety. My son was suicidal but he was treated like a criminal by the police. He was restrained, handcuffed and bundled into a police van. I appreciate in some cases this may be necessary but at that time, for Bailey, it was not. I had told the police before they found him that he would cooperate with them. For a third time, he was taken to the acute in-patient centre and this time they admitted him but after being assessed by the duty Psychiatrist the next morning, they allowed him to come home.
Bailey has now been referred to an Emotion Regulation Group to avoid that kind of crisis again and he hasn’t experienced psychosis symptoms for some time. He can still be irritable and struggles in social situations sometimes which can be hard work but, in general, he is well.
Nothing prepares a parent to hear their child say they feel suicidal. When Bailey was at his most unwell I was reluctant to leave him so I became isolated myself. I had to go to work but I was constantly worrying about him so I found it difficult to focus. The guilt and worry effected my sleep which had an impact on my own mental and physical health. I didn’t talk to many people about what was happening, I didn’t know how to start that conversation, but those who are aware have been so supportive and helpful. Perhaps more support for Carers could be explored.
As I said, Bailey has accessed every bit of support he has been offered so that he can get better, and I am so thankful that he has had that support available. Music has also helped heal him and all that time spent shut away in his bedroom was spent practising his guitar, so he is now a very talented musician. I’m so proud of all of his achievements but I’m most proud of how hard he has worked to battle his own demons and recover. I’m in awe of him for that! He’s my hero!