As some of you know, I recently made a complaint to my CMHT about their lack of care over a seven-month period. I have blogged about it twice, but here it the actual complaint I sent (with names removed for confidentiality reasons) with notes as to the official response I finally received this morning. The complaint was initially sent on the 2nd of April.
WARNING: Possible Triggers
Dear Sir or Madam
My name is Katy and I am writing to make a complaint about the care I have been receiving from my local Community Mental Health Team. I have copied my local MP into this email in the desperate hope that something will be done.
I was diagnosed with schizophrenia in 2010, and have been sectioned twice. The first time was in 2008. I was sectioned under a section 2 and stayed on that section until it ran out, 28 days later. I then spent a further month as an informal patient. The second time was in 2009. I was sectioned under a section 3 and it was renewed twice until I was finally discharged from the section, after a total of 16 months on sections. I spent a further month as an informal patient before being fully discharged and allowed home.
With all that in mind, it would seem like my CMHT would want to help me to make sure I didn't spend that long in hospital again. Sadly, no. Last year, I was seeing a male Community Psychiatric Nurse, but was only able to see him every 3 to 8 weeks. He was the only support I was receiving from anywhere. When I asked him for more support, he told me he would raise it in my next review in October 2012. He did, and my psychiatrist told that I would be seen by a social worker on a weekly basis from then on. The social worker made an appointment to see me the following week. After that appointment, I was seen on the 2nd November, and then told that I would be next seen on Tuesday 13th November.
About an hour before my appointment on the 13th, I was contacted to say that the social worker had been called to an emergency and would phone me to rearrange. When there was no phone call by the Friday (the 16th), my dad phoned her and asked her about rearranging the appointment. She told him that she would see me the next Tuesday afternoon, the 20th November. After spending the morning of the 20th out, I returned home a couple of hours before my appointment to find an answering machine message telling me that the social worker was off sick. The message said that the social worker would contact me when back and so I waited.
The following Monday, after no word from my CMHT, my dad again phoned them. He was told that the social worker was not yet back but would contact me on her return. The following Monday, I had received a letter from my CMHT about the group therapy I had been offered in my October review, and had to return a confirmation slip to them. My dad told me he would take the slip back to them and speak to them about the social worker. He came back to tell me how busy it was there and that the social worker still wasn't back. No one had told him anything else.
The following Monday, the 10th December, my dad again phoned my CMHT to ask what was happening. He was told that a manager was looking over the social worker's caseload and would get back to us with when I would get support back. It was now a month that I had been without support and I was now feeling hopeful that someone would contact me in the near future. Two weeks later, Christmas, I still hadn't received any word from my CMHT. I had spent a few days with my family at my sister's house but on my return home, I phoned my CMHT myself. Making a phone call is an extremely stressful thing for me to do, which is why my dad had made the phone calls up until now.
I spoke to a new starter at my CMHT who told me that the social worker was off sick. When I explained to her that the social worker had been off sick for several weeks, she put me through to the duty worker. The duty worker told me that the social worker would contact me when she was back so I told her that my CMHT didn't have a date for the social worker's return, and it could be a while before she returned. The duty worker told me how busy it was there as many staff at CMHTs across the county were off on holiday for Christmas and New Year, even though this is a period when many with a mental illness struggle more than ever. After trying to put the phone down on me, I asked her when I was going to get support back, and she told me she would speak to a manager, who would phone me back in the New Year. With that, the phone was slammed down.
My family decided to spend New Year with my sister at the last minute, and after a couple of days there, I returned home to an answering machine message from a female manager, which was left on New Year's Eve. As it was around 10 pm on the 2nd of January when I returned home, I had to wait until the following day before phoning her back. I contacted her on the morning of the 3rd of January, to be told that she was in a meeting. I was told that she would be out of her meeting by 12:30 pm at the latest and would contact me then. I asked the person I spoke to if she could tell the female manager that I had a hospital appointment at 2 pm, and would need to leave for it by 1:30 pm, so could the female manager ring me before then. The person I spoke to told me she would tell her, but when 1:30 pm arrived, and no phone call, I had to leave for my hospital appointment. As it was an appointment at a hospital just over the road from my CMHT, I decided to go in there and speak to someone.
After my appointment at the hospital, I went into my CMHT and spoke to the receptionist about the phone call from the female manager and how she hadn't returned my call. The receptionist told me that she would contact the female manager and if I waited, I could see someone. After a few minutes of waiting, the receptionist told me that the female manager would see me in five minutes. Half an hour later, a male manager came into the waiting room and called me through. He told me that the social worker 'might' be back at the end of January, and that he would look into when group therapy was starting, as I'd heard nothing about that since my dad handed the slip in, back in November. I asked him what I was supposed to do in the meantime, to which he told me to keep busy. As this answer was far from satisfactory, I asked him when I would be getting support back. He told me if I had an emergency, I could phone or visit them and they would help me then. He told me how I would be getting a letter soon to explain the social worker's absence and would hear about group therapy in the next few weeks.
I had been struggling to speak during the whole time I had been speaking to the male manager as I had been unsuccessfully trying not to cry. The male manager had said that many women cry more when it's their 'time of the month', and didn't seem to be entertaining the possibility that I was crying due to the stress of my situation. I felt sick being told this, and I tried to brush it off by telling him how disrespectful it was to have been left so long without anyone from my CMHT contacting me. He responded by saying that all emergencies had been seen and all medications had been sorted. He didn't seem to care that I should have been seen on a weekly basis, and it was now two months since anyone had seen me. I left my CMHT that day in floods of tears, feeling more stressed than before I had gone in. To top it off, when I returned home, there had been no phone call from the female manager.
A few days later, the letter about the social worker's absence arrived and, in a nutshell, it said that the social worker was off sick, they didn't know when she was back, but if we had an emergency in the meantime, we should contact them and they would try to call us or see us as soon as they could. It was the first piece of information I had received from my CMHT in the two months that the social worker had been off on sick leave for, and yet it didn't actually tell me anything those of us on the social worker's caseload wouldn't have known. The following week, I received a letter about group therapy, saying it would be starting the next week. I had been promised extra support before starting the group at my review on the 17th October, but I didn't have any. After many sleepless nights worrying about group, it was postponed for a week. I had to spend another week stressing about group before it finally started on the 23rd of January.
In the second week of group therapy (30th January), the psychologist running the group asked us all if we had care coordinators. Some in the group were unsure if they did and one person didn't even know what a care coordinator was. The psychologist told them that she would raise it in their team meeting the following day, so I asked her if she could raise the fact that I had been without support for nearly three months, even though I was supposed to be seen on a weekly basis. She asked me if I had any other support to which I shook my head. She told me that she would raise it at the team meeting and get someone to contact me, even if she had to contact me herself. It was the first time in months that I felt that someone from my CMHT was actually listening to me.
True to her word, the psychologist raised the issue at the team meeting and a duty CPN phoned me the next day. After asking me several questions, the duty CPN told me that she would speak to the managers and get one of them to speak to me the following day (Friday 1st February) or the next Monday (the 4th of February). When the next group session arrived on the 7th of February, I still had had no word from any of the managers. I told the psychologist this, and she apologised to me. She told me how even my psychiatrist had said that I should have had contact from a manager. When she told me that another female manager had returned from a long-term sickness, I asked the psychologist if she would speak to her. She did, and the other manager contacted me the following day.
The other manager made an appointment to see me the following week, on the 12th February. This was the first one to one appointment I had had for more than three months, despite the fact that I should have been having them weekly. She arranged for me to see an Occupational Therapist (OT) and would see me again two weeks later. The following week during group therapy, the 20th, my struggles there were becoming too much for me and I spoke to the psychologist about it. She told me I could give my apologies for the next group session and then speak to the other manager about whether or not I returned. She also told me how the social worker was now back at work and would phone me to arrange an appointment with me. The two things combined felt like a huge weight off my shoulders. I saw the OT two days later (the 22nd) and then returned for a follow up appointment with her on the 26th. I didn't have to go to the group session the next day, the 27th, and then saw the other manager again on the 28th.
At this appointment with the other manager, I told her about my struggles with group, and how it was so stressful for me. I had to make the point several times that I had the motivation to attend and wanted to engage with services, as she believed that I was either unmotivated or unwilling to engage with services. I asked her if dropping out of group therapy would limit my access to support in the future.
This was because I had previously turned down support in the form of a psychologist when I was unwell in hospital on a section. When I was discharged and at home in early 2011, I asked for a support worker. The CPN I was seeing at the time wouldn't make the referral for me, as I had turned down the psychology sessions in my time at hospital. She was basing her decision on my choices from a time where I was unwell in hospital, not how I presently was. It took several more months before anyone made the referral for me.
The other manager told me that turning down one service shouldn't restrict my access to other services and so I told her that I would no longer attend the group sessions. They were too stressful for me, and I was losing a lot of sleep worrying about it. The other manager reiterated what the psychologist had told me in my final group session, that the social worker was now back at work, and would phone me again in the near future to arrange an appointment with me.
As of today, the 2nd of April, I still have had no phone call from the social worker. By my calculations, this is the start of her seventh week back at work. Last Thursday, the 28th of March, I received a letter from her, telling me that my review would be in mid-April. Yet, she still hasn't phoned me to make an appointment with me, or even to find out how I am. One of the points of the letter, explaining the purpose of the review, is to discuss the extent to which my care plan requires amending. When I asked for my care plan a few months ago to send off with my application for Disability Living Allowance, I discovered that my current Care Plan dates from early 2011, when I was in hospital on a section. Surely, this required amending a lot earlier?
I'm sorry that this email is so long, but it has been a stressful few months and I wanted to explain everything that has happened in this time. Please do something about my CMHT, to help not only me, but others who have been left without support. I await your reply.
That was the complaint. I was told I would be receiving an official response within 30 working days (six weeks, plus a few extra days with bank holidays) but the official response is dated 13th June, just over 10 weeks after sending the complaint. I had received another letter from them about 4 weeks ago, basically saying that my CMHT hadn't responded properly yet. Also, my local MP has made no response to me either. However, here are the basic points of the response.
I was told by my psychiatrist that I would be receiving weekly support. The response says there is no mention of weekly visits in from that October 2012 review. Either my psychiatrist didn't write it down or it has been removed. I know what he told me, and my parents, who were present, can verify that I was told I would be receiving weekly support.
The response says that I did not wish the input of support services - SOMEBODY IS LYING HERE!! I had a support worker last year and loved the sessions with her. They were taken away from me because they weren't helpful in the right way. They were helpful, very much so, but not in the right way. So, by their wonderful logic, they took away the sessions. And now they're saying I didn't want support service input. Absolute load of rubbish. Later in the response, they say I was offered support services but declined. ANOTHER BIG FAT LIE!! When I was offered support services a couple of weeks ago, I leapt at the chance. Support services were NOT offered at the October review, because I know full well that I would have leapt at the chance for a support worker again. They say had I accepted this support, it would have been available to me regardless of the social worker's absence. IT WAS NOT OFFERED TO ME!!!
They also stated that I was happy with the level of care I was receiving. Yes, because I was told I would be receiving weekly support!! I was NOT happy when this weekly support wasn't given!!
They apologise for the length of time that it took to me to receive word that the social worker was going to be off for the long-term, and also that I was left without direct support. They have been assured that the team are agreeing to review its processes when care coordinators are on long-term sick. Let me guess, they'll review by saying "Everything's fine, end of review!"
They say that because of staff shortages, only clients that were deemed to be in urgent need of treatment were seen on an individual basis. I was deemed not critical, especially as I was starting the group shortly. Even though they knew I was going to struggle with group and ended up dropping out a few weeks in. With support, I may have been able to complete it.
With regards to the female manager who left me an answering machine message at New Year's Eve and didn't return the call I made to her, they state she doesn't recall ever speaking to me. Big surprise, as she hadn't spoken to me. Did they not read that SHE DID NOT RETURN MY CALL AND THEREFORE WOULD NOT HAVE SPOKEN TO ME?!! Oh, but she is very sorry. That should make it all so much better.
They state that when the social worker returned, she was given a different role and I was allocated a new care coordinator. This is true, BUT NOBODY TOLD ME ANYTHING FOR TWO MONTHS!!
And here's the big point. The conversation with the male manager where he made the 'time of the month' comment. He (in their words now) "is unable to fully recall [my] conversation but he feels sure that he explained to [me] why there was no-one available to see [me] on a regular basis at that time and that he hoped [the social worker] would return to work soon. He is also sure that he would have given [me] advice on how to contact the team if [my] circumstances changed and from the information contained within [my] records, would have advised [me] to keep busy by utilising [my] activity outlets. [He] is certain that on seeing [me] upset, he would not have said that many women cry more when it is their time of the month. He feels it was more likely that he would have said something around people feeling differently at different times, some days better than others. [He] is however very sorry you perceived him to be uncaring, which was not his intention." So, in brief, he is unable to fully recall my conversation but doesn't believe he said what I remember him saying. How can he say he is certain he didn't say what he did when he can't fully recall the conversation?
So there's my complaint and the response. I won't be taking it further, even with the amount of lies they've put in, because I do not have it in me. I have to think of my mental health and I am not letting these so and sos grind me down. I am receiving fortnightly support from a CPN and a support worker now, seeing them on alternate weeks so I am getting weekly support again. My mum and I are both livid at the response I received, even though she and I were both fully expecting this sort of response. I guess both of us couldn't really believe that people really could say these sorts of barefaced lies. But I am also not taking it further, because we are concerned that if I do, they could try and make out that I'm delusional again. I have been delusional in the past, but currently, I am not. However, if they can add these sorts of lies to an official response, I don't think it would be too much of a stretch to invent some delusions, or twist my words to make it out that I'm delusional again. I am not being put back on medication because of lies, and my mum is relieved that I am not taking it further. She does however, believe I made the right decision by making the complaint, and she knew that in my own head, I needed to make the initial complaint.
I'm sorry this post was so long but this is everything in all gory detail, aside from the names of those involved. Fingers crossed I'll keep getting my current level of support, and won't have to live through this sort of thing again!