Written evidence submitted by Mr Alex Head (CMH0067)

I have been a patient of the mental health services within the NHS for more than a decade. My experiences were generally the same, which were to put you on medication of some kind. I had never found that the medication did much accept perhaps stop me becoming worse, but did nothing to improve the feelings of anxiety and depression that I was feeling. Occasionally, I would be in usually very long waiting lists for therapy (talking or CBT), but these would usually be for around 6 sessions and by that time you would rarely get a chance to even create a relationship with a therapist, let alone work on any of your underlying issues.

In 2018, after suggesting to a mental health doctor, I was assessed and diagnosed with ADHD. This was something that made me more hopeful, as I thought I might now be more easy to treat. However, I was given medication that I found very distressing and rarely was my diagnosis taken into account when prescribing medication to me in the future. At this point, I had hopped from one medication to another (there is a list somewhere of all the medications I have been on and it is lengthy). Each medication needs some months in order to embed itself, but also it is so difficult to get appointments with doctors that even if you felt the meds were not working you would have to stay on them for a longer time until you could speak to a doctor.

In 2022, around the time I first contacted you, I was also diagnosed with OCD. This almost came out of nowhere, where I was suddenly having anxieties about dirt and what I was touching in the world around me, as well as having disturbing intrusive thoughts that would become lodged in my head. I got to a point where I told the mental health teams that if they could not help me soon, that I was afraid that I was going to take my own life. They directed me to Home Treatment Team. This process, whereby a person comes to your home everyday (usually a different person each time), stays for 5 minutes and gives you any medication you may need went on for a month, during which time I was repeatedly told that I would be seeing a therapist any day. After the month was over, and I was released from the team, I still had not seen a therapist, I questioned when I would be seeing a therapist they told me that what I was told was inaccurate and that I was to be on the waiting list to see a therapist but that I would be waiting around 2 years (I also months later found out that I was not put on that waiting list at that point so had to wait even longer). This was obviously devastating but I continued on with the mental health services.

Often a suggestion made to me when I was very low was to call the Crisis line. This is what is regularly advised. However, this is often a bad option as I have had insensitive comments (“stop crying! I can’t understand you when you’re crying”) or the suggestion that when I’m feeling suicidal that I should just go and make myself a cup of tea.

I should also say that during this time, I have become convinced, through reading and advice from others, that I may be autistic, however I am still on a long waiting list to get a diagnosis of this.

I was becoming quite disillusioned with medication, as I had been on several over the years and found very little had helped and that often I would just be left on them, sometimes for 1 or 2 years without anyone suggesting better alternatives. My current doctor suggested a drug that he was confident was going to work and so in around Summer 2023, I started taking that drug. I had very little effect at first, it maybe moved the needle here or there but not very much. I was told that I needed to give each dose of it around 8-12 weeks to work. However, the times between appointments would often be longer, closer to 16 weeks and when a medication isn't working this is a long time. By one year later in Summer 2024, I still wasn't even on the highest dose of this medication and it had made no difference and I was taken off it. I asked at this point whether it was worth me trying no medication. It was agreed, especially as, by this point, I had started seeing a therapist again.

Coming off the medication was a horrible experience and it was in no way explained to me that I might suffer the way that I did. I was regularly sick and nauseous, had severe headaches, dizziness, severe nightmares and many other issues. This was lasting weeks and months and when I informed my doctor he said that this was common and that there was no real time frame for how long it may last. Then just before Christmas 2024, I started waking up every morning having a panic attack. My heart would be pounding, I'd be panicked and I sometimes wouldn't even know who I was or where I was. Again, I spoke to the doctor and the options were limited to talking to my therapist (who, as Christmas was approaching, I wouldn't be seeing for another 4 weeks), take a sedative that had previously knocked me out so severely it made me unable to function (I was also working a full time job at this point or just start up on anti-depressants again. To be honest, I felt nothing was going to help me. And worse, because I suggested coming off medication, I felt like it was my fault.

During these times I was also assigned a care co-ordinator. My experiences with these people have often been that they make matters worse. They seem to just provide a wall between you and your doctor and they are often rude and unsympathetic to you. I've had a few different ones (they've often been changed with me with little warning) and they often just seem uncomfortable in your presence. If I cry or get upset in front of these people (and in my current condition I cry almost several times a day) they just seem disinterested or unsure what to do. I've also found they often ask me what they can do to help me, rather than offering any help.

At the beginning of January this year, I had a meeting with my care co-ordinator that basically led to me saying that I couldn't cope anymore and that I was suicidal. I felt like I was criticised for coming off medication (as I said this was agreed with the doctor). Eventually it was decided that I needed to go to a psychiatric ward for my safety. I was contacted the next day by a doctor at Goodmayes Hospital, who said a bed was available to me, but that it might be a stressful environment (I will be honest and say I read some reviews of this Hospital on Google and it did not paint a pretty picture) and that I wouldn't receive any treatment except medication (apparently you are lucky if you see a doctor once per week). One of the things I had suggested to my care co-ordinator was also a Crisis House. My care co-ordinator never really replied about it and the doctors I spoke to didn't seem to think there was one in Waltham Forest so this wasn't an option. When I spoke to the doctor at Goodmayes, she offered me this service (potentially out of the borough but she offered it). She then got back to me an hour later to tell me that there was a Crisis House in Waltham Forest near Blackhorse Road. I went to this house, with my partner, and basically one gentleman was there, he basically showed me my room, and gave very little information about the building or how the system worked. I decided I did not want to stay there.   

So I basically ended up back in the care of the Home Treatment Team. This experience has been worse than the last. They are often rude and critical of me at a time when I need kindness and gentleness. They often don't listen and they give incorrect information or seemed uninformed as to what has happened the day before. They sometimes forget what medication they have given me and rely on me to tell them what they are doing. They have often left me in tears after there visit due to the way they have spoken to me. The other day I popped out briefly to the shops and they happened to visit at this time. I went home and waited for them and heard nothing. The next day I asked what had happened and they said they turned up but I wasn't here. They then made no further enquiries or even bothered to leave a voicemail. Bare in mind, I have been recently suicidal, this seems particularly careless to me. If there is one suggestion of where money should be spent with regards to future resources it would be to hire less people who do not have the skills to deal with people with mental health issues.

Alongside this, I decided to go back on medication. This was a hard decision as I have been so regularly disappointed in the past. I had a discussion with the Home Treatment Team's doctor and we decided that I should try ADHD medication again. He then needed to speak to a supervisor but that they should be able to prescribe me the meds ASAP. This was a Tuesday. I kept checking with the team. It wasn't until Friday night that someone said that they couldn't prescribe me these meds and that I would need to go through my GP. I then had to wait all weekend and then speak to my GP. My GP told me I needed a letter from a mental health service for them to prescribe me the meds. The Home Treatment Team said they couldn't do this, but that the ADHD team can. I spoke to the ADHD team and it turns out there department has been basically reduced and that they don't prescribe meds anymore and that I need to go back to my GP. I eventually had a conversation with the original doctor I spoke to who told me that basically there's no way I can have the medication that I need. He also told me that he didn't think it was the right medication for me and that he was just going along with what I suggested. It took them 10 days and me chasing and calling people for them to work that out. I am now starting back on an anti-depressant that I have already been on before with the hope that there is a different outcome this time.

As you can imagine, this last month (and few years to be honest) have been very difficult. I'm glad that there seems to be investigations going on, but I really think something needs to be done soon. I have been made to feel actively worse these last few weeks at a point where I have needed support the most. I dread to think of people who are in lower places mentally than me and that when they are vulnerable and basically want to take their own life, they are faced with rudeness, incompetence and made to feel like they have to go through these problems alone. On one of the days, I felt like I was constantly going into battle, having to try and defend myself. I should not have to feel this way. And I should not feel, as I have at times, like these circumstances are my fault or that I'm to blame. I often feel like many of the people I have spoken to have wanted me to make my own decisions about my medical treatment, when it is why I have contacted them to get advice/treatment.

I don't know what can be suggested, I'm hoping that future care will be better so that I don't end up back where I currently am, but it is hard to be optimistic.

Best regards

Alex Head

January 2025