So on Monday I was discharged from the HTT team knowing that today I had an appointment with my care coordinator in the Short Term Intervention team.
To set the background story I was discharged from MH services last May after being in the system for 15 years. After a crisis last October I was referred back to services but only to the Short Term Intervention Team (SIT Team). It was made very clear to me that this was just until March ( this month) however I hadn’t really been thinking about this having been in crisis again following an episode and only just been well enough to be discharged from the HTT.
on Monday I was apprehensive about being discharged from HTT but I knew that the initial crisis had passed and felt that with the support of my care coordinator and GP I would feel supported – little did I know that the originally plan for discharge from the SIT team was being kept to, despite my recent episode and so I am writing this with absolutely no MH support at all.
I am still in shock and I was not up to challenging this decision and didn’t for a few reasons. Firstly I know that the system has very tight constraints and therefore my care coordinator probably was not able to change the decision that was made today. Secondly I am so paranoid and anxious that I didn’t have the confidence to challenge the decision and Thirdly I really think that because I work they don’t fully understand the crisis that I have experienced and how bipolar affects me day to day so challenging might make things worse.
This all comes back to the fact that the system seems to do everything it can to push people out of long term care and into short term care when they in fact have a long term mental health condition. I acknowledge that I do cope with episodes better than I did and therefore do not need the high level support I once did but I am positive that by keeping me in the system with some consistancy would aid the recovery from episodes and mean I get crisis support quickly and not have to wait for referrals all the time.
From another perspective I feel for my family and friends who have also had the reassurance that I was being supported, monitored cared for 2 days ago but now I am back with my GP and they are also without the support network that they had.
As a governor I understand some of the challenges but the total lack of flexibility shown in my case this week is staggering and I am hoping it won’t have a devastating effect long term.
Author: katcopley
Do I make a formal complaint or not? Would welcome comments!
Over the past week I have experienced and been on the receiving end of some pretty abysmal care. The list of things that I feel I would be justified to complain about are:
*Having to wait 48 hours to receive a call after my GP highlighted to services I was in crisis.
*Being offered an appointment with Crisis team only to be told 5 mins later that I had to see my care co-ordinator first at a different location that I couldn’t physically get to.
*I then had no choice but to make the distressing trip to A and E where even though I was seen by triage quickly I waited 4 hours to be seen by the mental health team.
*When we were seen I was asked where I had been as I had been apparently called an hour and a half earlier. We hadn’t moved the entire time and proof of that would be on CCTV. We weren’t believed at the time though.
*One of the things I needed was more diazepam which I requested at the initial assessment but this wasn’t passed on to the crisis team who I was referred on to.
*At my 2nd Crisis team appointment over the weekend a lone male came to see me when it clearly says in my notes that a female must be present.
*I was refused Diazepam that I had been promised even though it is on my care plan.
*When I asked to see a doctor about this this carried out a conversation in public in reception.
I also have seen some excellent examples of our NHS which give me hope and also need to be written about:
*My GP has been absolutely fantastic and kept in contact throughout, supported me and also the doctors receptionists have gone beyond the call of duty.
*At A and E the pre-triage nurse was absolutely brilliant and ensured the triage nurse saw me very quickly even if the mental health team then kept me waiting.
*I have now had 2 excellent crisis team appointments and the staff have really supported me and finally I am getting some support.
So whether I make a complaint is my next dilemma. I am a governor of the trust so don’t want to be a trouble maker but I think it is important for me to highlight the mistakes, and the excellent examples of care. I am thinking of complaining just about the points I can prove as I always get upset when it is my word against a professionals and obviously I am never believed.
Whatever I do I want it to be constructive and ensure it makes a difference.
Trying to see some positives in what has been a difficult week.
Yesterday morning I made it to Church thanks to Mum for driving me. I also sung there and was so pleased as if I can have a good sing then that can sometimes help a but. This episode hasn’t given me symptoms of horrendous depression which I is unusual, but it has meant that things like singing are possible and I have noticed that I haven’t stayed in bed for really long periods of time. It has also meant that I think the desperation has been more intense so no less distressing an episode.
Yesterday afternoon I went for a crisis team appointment and although it started badly by one lone male nurse trying to see me on his own and a horrendous ‘appointment’ in reception with a doctor who refused to prescribe me what I am used to I did in the end see 2 female nurses who did their best to help.
Today I called my GP and she prescribed diazepam as normal and seemed completely happy that I am following my care plan regarding the medication correctly.
I was so reassured to speak to my GP and she promised we could revisit my care plan so that some of the communication problems can be improved and also decide if it is causing me too much distress seeking support with the mental health system.
I also went to work today and managed 4 hours which was just enough as I cleared a few emails, sorted some queries and slowly eased myself in. I then had my most positive appointment with the crisis team – only taken 6 days to get good support in place but they listened, understood my distress and most importantly didn’t judge me or jump to their own conclusions. It was the first appointment I had been seen fairly near the time allocated which makes a huge difference.
So I am now resting and think that I am definitely calmer, I am still sure I am doing all I can, I am not listening to those people that have been unsympathetic who should know better and I am still fighting. It isn’t great but I can see an improvement.
This Crisis Care just keeps getting worse ….
Last night one of the things I asked for at A and E was some more medication as the only thing that is really giving me any respite from the anxiety/paranoia is diazepam. I only keep a very small number of these as when I am well I might only take 2mg every couple of weeks or even less than that. When I called my GP last Wednesday she asked me what meds I had and if I had enough to take 5-6mg per day until yesterday as by then we hoped that the Mental Health Team support would be in place. Obviously by last night I was running low and now I only have 4 mg left.
Last night at A and E I explained this and the MH worker who I saw wrote down how much I was taking currently and that I needed some more. This wasn’t though passed on to the Home Treatment Team and so when I turned up today they knew nothing about it.
The other very weird thing is that they said they have no doctors within HTT over the weekend and therefore can only rely on the duty doctors on the psychiatrist wards in the same building. They did ask her to prescribe but because the mental health team aren’t my main carer’s there is no record of prescribing diazepam in the last 6 months because my GP does this.
I am pretty disgusted by this and just as I had found a small amount of stability I am putting this in jeopardy. My friend who was with me last has confirmed that we asked for the medication however the HTT even questioned this as well today. As a governor of the trust where I am trying to access support this completely baffles me and I am starting to feel that I am being targeted in someway although I realise that paranoia is so bad that I need to keep these thoughts to one side.
I am seeing the HTT tomorrow afternoon as having the contact and support is a valuable part of the support that I need but I am worried about coping till Monday with less medication.
So A and E in a crisis doesn’t get any better at all
My care coordinator called me earlier today after 48 hours from when I first called my GP. Not sure what the delay was but she said that she would refer me to the Crisis Team also known as Home Treatment Team (HTT). She then called me back and said that she had been told that she would have to see me first before the HTT could. I didn’t understand this & wasn’t happy to accept this because a) I couldn’t get to see my care coordinator when she could see me and b) I needed to just be assessed once and not twice which is what would happen. I couldn’t understand why they don’t realise that if I ask for help and kick start the crisis plan then I need to be taken seriously and certainly not given 2 assessments unnecessarily. The other problem of getting somewhere was also not understood which was frustrating.
I was therefore told that there was nothing else that could be done apart from a and e.
At 3pm my friend and I agreed that I had to go to a and e as so unwell but I was very frustrated by this. We were seen firstly by a nurse who points people to the most appropriate area and then we sat in a quieter area of the waiting room. I was seen by the triage nurse very quickly however she didn’t fill me with confidence. She called the mental health liaison worker whilst I was there and even said ‘I’ve got another one for you’! I just don’t understand why people think that is an acceptable thing to say – you wouldn’t say it about a cancer patient? She also commented on my anxiety and instead of being sympathetic she said I didn’t need to shake! Couldn’t make it up really!
By this time it was only about 3.40pm and it was stressful and exacerbated my anxiety & paranoia. We stayed in the same place the entire time and I probably lost concentration to have a panic attack but no one called us at all. About 6pm I asked whether there was any update and shortly afterwards the mental health worker (which we didn’t know who he was at the time) came and asked for someone calked ‘Helen’. It transpired that she had also got fed up with waiting.
Even though I was still waiting we witnessed the mental health worker having a good long chat and laugh with the security guard for over 10 minutes and then he disappeared. It was only when the original nurse that we saw when I walked in the door saw us still waiting and actually went and found the mental health worker that we realised what had happened. Apparently the mental health worker had been ‘looking for me’ since 6pm – it was now nearly 7.30pm. As usual it seemed that it was my word against his – thank goodness that my friend was with me so I knew he hadn’t.
I was eventually seen and he was quite an amenable man however it is so hard for me to talk to strangers and also he asked me why I had refused to attend the HTT team earlier today! I couldn’t believe that had been put in my notes when I hadn’t refused at all.
I now have a referral to HTT and they are seeing me at 5.30pm tomorrow and will be able to help with PRN meads and support over the weekend. Just seems a completely ridiculous and time wasting way of doing things. When will crisis care change.
After ‘Limbo’ lasted ages : the crisis came all too quickly…
Yesterday morning I made the difficult decision of calling my GP and putting my crisis care plan in place. I had gone to work and was taking things slowly and had taken a small dose of diazepam to try and hide the shakes and paranoia. I popped into a colleagues office ( she is a nurse) who took one look at me and knew that I was in crisis. It had come quickly and in a most peculiar way as I didn’t feel depressed in fact I didn’t feel much apart from horrendous anxiety, paranoia, hearing and seeing things that weren’t there and completely desperate. Despite this I didn’t really feel much – no senses, I wasn’t hot or cold, I wasn’t hungry and therefore was becoming physically ill as well.
My wonderful colleague let me use her phone to contact the GP who called back to confirm she had contacted the mental Heath system and I would hear from them tomorrow. In to mean time I am drugged up to my eye balls on diazepam but it means I can hardly move from my bed and whilst on my own all day this just made me worse and worse and my suicidal thoughts reach stage 2.
Plan for tomorrow is that my wonderful church Elder collects me to take me for coffee morning at church and hope I get an appointment and help for weekend. I can’t rely on any calls from the system so need to rely on my friends and family networks.
My biggest fear is being articulate in an assessment as can’t make sense of any of it. Not even sure that this is a depressive episode – more psychotic with suicidal symptoms. Just so confused. Also not seen psychiatrist for a year or maybe more.
Will the call come tomorrow or will I be left all weekend with no support in the system? Also running out of medications. All so very hard.
In Limbo wondering what my mood might do next!
This time last week I was hypomanic in fact every day last week I could quite easily have worked another full day, my mind was racing and in certain social situations I had increased confidence. This also had negative symptoms as well and for the last 2 weeks the hypomania has presented different symptoms including anxiety. On Friday I noticed that my head and actions had calmed significantly however I have been left with the most frightening paranoia and I am terrified that I am going to enter a depressive episode and that is something I can’t seem to shake off.
I know that sometimes I can experience hypomania and then a period of relative stability however I also know that depression is an option and the last couple of episodes have gone this way and in a dramatic fashion.
A day or even an hour at a time is the best course of action for the next few days. Apologies for short blog but struggling to get my words out or make much sense. Thanks for reading.
A post for #selfharmawarenessday yesterday
I write this post as someone who self harmed from the age of 14 until only a year or so ago. So for over half my life I had been consumed by self harm. I both hated it with a passion but relied on it like a good faithful friend.
I remember the first time I self harmed I was at school and sat on top of a toilet cistern to hide away and cut my arm with a compass point.
What I felt when I did this was a massive release and relief from the mental pain just for a small amount of time. It wasn’t at all about gaining attention (even though others thought that was the case) but more a way of coping and getting through an enormously difficult time. I didn’t really know much about self harm and certainly it wasn’t a public thing or part of any group action.
Yes it frightened me; but as I got older it actually probably saved my life. At times when I was immensely suicidal the release by self harming and therefore the small focus away from the mental pain sometimes gave me respite from intense suicidal feelings.
As my bipolar became more prominent the fact I self harmed seemed to distract psychiatrists away from a bipolar diagnosis even though there was a clear family history. This was frustrating as it seemed the only symptom/end result that was focused on and even when I had a bipolar diagnosis other psychiatrists who I might see during crisis or within the home treatment team would convince themselves my bipolar diagnosis was incorrect and just focus on the self harm.
This happened most recently 2 years ago and after that very distressing crisis assessment I made an official complaint and actually got to meet with the trust medical director and correct my medical records. Self harm can be a symptom of many psychological diagnosis’ and consistency of professionals is vital in ensuring the full picture is taken into consideration.
People often ask me how I stopped self harming. I actually stopped over a year before I actually stopped wanting to self harm. I stopped because I convinced myself that it wasn’t working like it used to and that I had managed to build up a tool box of other coping mechanisms that actually worked better. Just stopping didn’t though take away the debilitating urges and horrendous flashbacks to times that I had self harmed which in turn would lead to dreams and images recalling horrendous episodes of mania and depression time and time again.
When I started my second cycle of EMDR it was clear that tackling the self harm was a priority and so this is what we concentrated on. It was absolutely horrendous and I re-lived some terrifying experiences but since last May ( a couple of months after finishing EMDR and throwing all my blades away) I realised that I no longer wanted to self harm.
The first major depressive episode that I experienced was the ultimate ‘test’ but not once did I want to self harm and not once did I buy any blades. Yes I felt desperate and suicidal but the urge to self harm had disappeared and not returned.
What would I say to people that have an urge to self harm – this is a hard one but I hope that they have somewhere or someone to turn to instead of self harming. I realise that this isn’t often the case and therefore self harm might be the only option in some peoples minds and if people do self harm they need to be given support, safe places and not judged because they self harm. It is not attention seeking behaviour and often as in my case a life saving coping strategy. I actually often would text the Samaritans when I had an urge to cut. This did stop me more than just a few times as it gave my mind a different focus and so became another coping strategy.
I wish I had never started but also know it part of my story.
A good appointment that in the end was more frustrating than helpful
I today went to my monthly appointment with my care coordinator who had kindly and sensibly invited along my therapist who I know very well and who I finished sessions with last May. I was incredible anxious when I got there partly because having monthly appointments is generally making me anxious as they are so far apart and also because this particular episode is a very anxious one.
In a way I found it weird with 2 people there but my therapist took the lead and both of them seemed to be concerned about how I was at present. I was asked how I was using my therapy strategies and how I thought I was recognising my triggers and early warning signs. To be honest I think that as far as is possible I use as many strategies as best I can but I explained that when I become unwell…
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A good appointment that in the end was more frustrating than helpful
I today went to my monthly appointment with my care coordinator who had kindly and sensibly invited along my therapist who I know very well and who I finished sessions with last May. I was incredible anxious when I got there partly because having monthly appointments is generally making me anxious as they are so far apart and also because this particular episode is a very anxious one.
In a way I found it weird with 2 people there but my therapist took the lead and both of them seemed to be concerned about how I was at present. I was asked how I was using my therapy strategies and how I thought I was recognising my triggers and early warning signs. To be honest I think that as far as is possible I use as many strategies as best I can but I explained that when I become unwell my focus is staying safe not whether I have practiced mindfulness as that goes out the window with me during these times.
My therapist then focused on the letter which she wrote to me after therapy in May. It focused on the main areas we had worked on and the strategies which we had used to help with certain symptoms.
These ranged from work on self esteem, self harm, self care, dealing with anxiety and using mindfulness to name just a few. I was so touched that my therapist really recognised the huge effort I have put into working on strategies since therapy and yes that spurs me on but I also felt angry that I am doing what I can but actually feel so isolated because I am doing it all on my own with no support from the system. Not only am I doing it all on my own but my family and friends are caring for me on their own with no support.
I left the appointment very grateful for the chance to talk to someone about how I really felt, gain reassurance that I am doing all I can and having the opportunity to ask a couple of questions about strategies for coping with psychotic symptoms. However I also left the appointment upset as it highlighted that this sort of intervention could really help me but I know it isn’t on offer. I also don’t want to become reliant on support when it will be taken away next month again.
I just have the same unanswered question ‘ surely consistency, individualised support and support that relates to need is better than slow, inconsistent crisis care that often comes too late and disjointed in its approach’?
My Journey through the world of Mental Health 