Monday, 2 July 2018

Dear NSFT | 20 months later

I have been debating writing a part two to my original open letter to Norfolk & Suffolk Youth Mental Health Team pretty much since I uploaded the post, back in 2016. A lot has happened and I actually have now been discharged from the service, so it is realistically, the perfect timing.

Dear NSFT, when I last wrote one of these blog posts, you had just gotten out of special measures which I struggled to believe but unsurprisingly, within a year, your service was once again rated as inadequate, something that I think everyone was expecting; both service users and employees. I must admit, this post isn't aimed at every aspect of your service but mainly at 80 St Stephens Road, a place that I have regularly visited over the past four and a half years, a place that has sometimes helped me and other times hindered my recovery but it is a place that seriously needs severe improvements because if not, there is going to be absolutely no service and deaths are going to rise up even higher than they already are. Don't get me wrong, I am guessing that the lack of care and the incompetence of some workers is the same across all aspects of the service, but I can only speak out of experience for 80 St Stephens.

4th March 2018

Over the past 18 months, I have had more disagreements than ever with the professionals involved in my care, I have impulsively stopped DBT upon finding out that my therapist was leaving and I am still on the same medication because getting a medication review seems almost impossible.

I feel like I have changed massively too, I was in a psychology review a couple of weeks ago and it was mentioned how I have been in the same services for seven years now which is a long time, I feel like I have exhausted all of the therapy options and I feel like nobody knows what to do with me. I have also turned quite withdrawn and am very reluctant to talk about how I am feeling due to in the past, case managers leaving after I have opened up to them. I struggle to explain how I am feeling as it is which I think is probably more of a coping method than a trust issue. I am scared that talking about how I feel, will only result in me feeling worse so I tend to bottle it up, which I know isn't a good way to go but bad habits are hard to break.

I found this draft whilst writing up this post and felt that it was important to add it in, just to show how this post isn't purely based on the fact that I have been discharged and I think that it is nice to see how I was feeling about the service, a few months before I was discharged.

19th June 2018

I have apparently been discharged, in fact tomorrow is 28 days since I was discharged from your service, over a phone call may I add. I am not going to dwell too much over my discharge as I have already spoken heavily about that in a previous post but what really pushed me to write this post was that tomorrow is 28 days since I was discharged, and a discharge letter has not even been sent out yet, despite my numerous attempts to chase it up. When I was discharged, I was given very minimal advice which has slightly improved over the past couple of weeks, I have been given a bit of advice about what to do about my medication even though this is a bit pointless considering that my medication should now be dealt with by my GP, who wont see me in regards to my medication because as far as he is aware, I am still a service user under NSFT.

Another issue that I want to talk about is support, or my lack of support. I wasn't discharged because I was ready to be in the slightest, in my eyes, I was discharged because I missed a couple of appointments and because they don't know what to do with me anymore and they are under huge demand, so its out with the old and in with the new. According to my case manager, in a psychology review a few months prior to my discharge, I wasn't in a mindset which was ready to engage in therapy, I am saying according because the outcome letter of this assessment, never got sent to me despite me being told that it would be resent. I don't understand how somebody who is unable to engage in therapy, is ready for discharge but apparently NSFT have their own idea of when the right time is to discharge an individual from their care. So it has been almost a month that I have apparently not been within the service, so not only have I had no support from NSFT, but I also haven't been able to receive support by going to my GP because once again, they are under the impression that I am still with 80 St Stephens.

I think one of the key factors in my discharge was that I am not regularly engaging in self destructive behaviours and therefore to them, I am not as worthy of receiving support as other service users who are still engaging in self destructive behaviours. Before anybody gets the wrong idea, I completely understand that these individuals are more of a high risk and that they may need more support, but I also don't see that as a justified reason to discharge another service user. Luckily, I have stayed safe over the past month and haven't landed myself in A&E but if I had, I am wondering if they would too, not be able to offer me any other support because I am apparently still under the care of NSFT. I called the reception of 80 St Stephens today, and even the receptionist said that there is no evidence to suggest that my Case Manager has discharged me and I am sick of being stuck in limbo.

2nd July 2018

It has been a couple of weeks since I started writing this post and my discharge letter actually arrived on the 22nd June; 30 whole days since I was originally discharged although, saying that, the date that I was discharged from services was written as the 20th June, most probably because they know that they should have got that letter out sooner and failed to, despite my numerous requests. Within my discharge letter, it has been stated that I "should be able to stay well if I commit to my wellness checklist", first of all, I should? How reassuring, secondly, this is the first time I have heard about a wellness checklist so I am a little bit confused, and thirdly, If I am classed as well and this is how my life is going to be, I am not sure if I want it.

To be honest, there isn't too much written in my discharge letter but one thing that did stand out to me was the fact that it is said that I can self refer back which I am almost certain is not how it works, could you imagine just calling up and telling them that you want to refer yourself to their service? They'd laugh in your face and tell you that you need to go to your GP.

Finally, in regards to the discharged letter I received, my case manager scribbled a note all over the bottom which I do not appreciate, she could have written it on a separate piece of paper, especially considering that at some point, I may need this paperwork.

Overall, my entire discharge from NSFT was shambles, I wasn't given any professional support throughout the time it took for my letter to be written minus a discharge medication review which I refused because I had already been discharged, so why would I want to go back? I found it really difficult to seek support because I felt that it was unfair to use my friends and family when they don't know how best to support me and also because my friends often struggle themselves and its not fair to put all of my problems onto them when they have their own to deal with, it has made me feel completely unworthy, it has been proven that I am not worthy of help or support, I have been dropped and I don't have any hope left because if specialists can't help me, then who can? In my head, I am under the impression that this is my life, this is how it is going to be, I wont ever get better and that i'll just have to deal with being ill until I die. 

I was going to file a complaint against NSFT in regards to my experience, support and discharge because it should not have taken a month for me to receive a letter, especially when I had queried the service on it multiple times but if I was going to complain, I would want to complain about everything that happened that was wrong, that shouldn't have happened and that could have cost me my life but as my mum said, what is the point when it may turn into my word against theirs and that they may even say that I am unwell and therefore am not telling the truth which as bad as it sounds, I can see happening. However, is it really right to hold back with a complaint out of fear that your words will be twisted? I really can't help but worry that the same thing will happen to somebody else and they will lose their life and therefore, I feel that I have a duty to complain, but I equally wouldn't want to risk a professionals career because deep down, I do have a heart. 

In the near future, I do need to find the confidence to make an appointment with my local GP, I haven't ever met my doctor and I am full of worries but I also have nothing left to lose and I need to get a plan put in place for my medication. Despite all of the stress, worries and emotions, I am pleased to be out of the absolute joke of a service that I have spent more than six years in, my support was very minimal so I haven't seen a drastic change minus the fact that I can no longer access immediate support when required. I am sure that I will keep plodding on as usual, because relapsing isn't worth it, especially with the risk that I could end up back under the care of NSFT.

One last thing that I would like to mention, is that I cannot believe the amount of time, effort and money that went into redecorating 80 St Stephens Road with painting the meeting rooms and buying new chairs when I can think of a dozen other things the money could have been better spent on but that just sums the service up, right?

Thank-you for reading, Tay x

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