You don’t appreciate what you’ve got until it’s gone.

From July 2012-February 2013, I was a CAMHS service user. I saw the consultant psychiatrist 4 times, an assistant psychologist 5 times and the CPN a few times a month. During this time I would also see my GP at her request, sometimes every week or sometimes every 2 weeks. Never more than 2 weeks though. She wanted to keep a very close eye on me.

At the time, I can’t say I was particularly enamored with the care I received from the CAMHS team. In this blog I spoke about how damning the “professionals” could be at times. 

Before I first got seen at the CMHT, I was rather excited. I was looking forward to working towards recovery with a new team of people, fronted by my two GPs who would have fortnightly/weekly contact. The first appointment was very disappointing. I blogged about it here.

Since then, I have met with a psychologist to discuss psychological therapies. This was also a fail of an appointment because thanks to her, no decision was made.

And then there was the overdose episode. I have actually not heard from the CMHT since then, but my GPs have both been more than brilliant at dealing with me and looking after me since then.

Then I found out that there was this professionals meeting about me which was to be attended by one of my GPs, the psychiatrist and the psychologist. This week, I got to find out the outcome of this. And it most certainly was not what I was expecting.

From this week, I am not supposed to be having ANY contact with my GPs (which is impossible because I have physical health issues which need to be sorted out) because apparently they’re “TOO SYMPATHETIC” towards me. Have you ever heard such drivel in your life? Because I certainly haven’t. I don’t think my GPs are in favour of this at all but are not in a position to argue with these so called “specialists”. It is pretty obvious to everybody around me, even those who don’t know the specifics, that I have very close relationships with my GPs and that I trust them with my life.

So now my care is managed in secondary care, rather than primary care. When I found out at my appointment with one of the GPs on Tuesday, I just cried. I have been going to the Drs’ surgery for over two years to be looked after regarding my mental health. How can it just be stopped so abruptly and without asking me what my opinion is??

To make matters worse, with my very important exams coming up in the next couple of weeks, I am going to be needing ALL the support I can get and my GPs were more than happy to see me every week, even twice if necessary to make sure that I was coping properly.

Since the meeting which was on the 9/05, I have not been contacted by the CMHT to let me know about what is going on. I have not got an appointment booked in with anyone which always makes me feel uneasy. I know that I cannot do these exams without any support. My GPs know that.

I guess what I’m trying to get at is that up until the end of January, I was being seen regularly by the CMHT and by my GP(s) and it was working just fine. Now, about six months later, it appears that I’m being seen by no one. And by the way it sounds, I will be chastised if I go to my GP surgery asking for help with my mental health problems. Brilliant isn’t it?

You don’t appreciate what you’ve got until it’s gone; I miss CAMHS & I never thought I’d say that.

I’m just massively disappointed with how it’s all turned out.

Recently & Coming Up…

Monday marks the first of my final exams at my school. I have six and I shall finally finish on the 17th June. I’m scared because this really is my last ever chance. 

My life is going to change dramatically over the next few months and to be quite honest; I am scared about it. 

I’m finding it hard to do a lot these days. I seem to be suffering from chronic exhaustion albeit suffering at the same time from terrible insomnia. My concentration is poor. Doesn’t bode well for the next few weeks when I need to be concentrating for hours on end. My GPs are not expecting me to do very well. But they understand and they are very reassuring for me and I truly appreciate their honesty.

Speaking of my GPs, the lovely Dr B (who’s been my GP for years and has looked after me for over two years) was truly wonderful this week and went above and beyond the call of duty and  on her day off went to a meeting all about me with the CMHT… Dr W who I saw earlier in the week said that Dr B wouldn’t do that for many of her patients. I felt touched and honoured and so grateful that someone would do that for me. I shall get the feedback from the meeting on Tuesday when I go and see Dr B. I’m anxious to know what was discussed…. Hopefully a proper treatment plan will be in place. I know that she was going to express her and Dr W’s concerns about how inadequate my experience has been with them so far has been. 

I also got accepted for DSA (Disabled Student’s Allowance) this week. I have to go and have a need’s assessment in the next couple of week which I guess will be similar to an ATOS assessment. Not looking forward to that. I wasn’t 100% sure that I would be accepted for DSA so it was a bit of surprise when the letter came through saying I was eligible. It kind of hit home at that point how poorly I am and how poorly I have been.

I’m in the middle of creating a PSHE lesson to be given out at my school sixth form about mental illness mainly because I’m not impressed by some of the attitudes towards mental illness I’ve seen (on twitter for example) or heard around school. I hope that it will make a difference to at least one person. 

Right that’ll do for now. Hope you’re having a great weekend! 

 

The CAMHS to Adult transition {PLAN!!}

The aim of most CAMHS teams is to have patients discharged from their service before it is necessary to transfer them over to adult services.

Unfortunately for some patients (like me), they are not ready for discharge and still require secondary care from mental health services. This means that at some point in the patient’s care, their continuity of care will have to be disrupted and will move on into the adult services.

Now for me, the transition has been difficult. I knew from my 18th birthday in November what it would entail; my psychiatrist would assess me, decide whether I needed to be transferred to Adult Services and then refer me if necessary. The CAMHS psychiatrist deemed it necessary for me to carry on being seen by the adult team when I had outgrown CAMHS. So the transition process began in December 2012. A couple of weeks ago, I saw the adult team for the first time. It took almost 3 months for me to be seen, even though the referral was from another psychiatrist. During this time, I still saw the CAMHS CPN and she spent a lot of time telling me that there’s every chance that the adult psychiatrist would discharge me and I spent a lot of time thinking that my GP would be fuming if that happened.

Last week, I was supposed to have my last appointment with the CAMHS CPN before the transition was truly over but, the appointment was cancelled which I think was bad show. I had been seeing that CPN since July last year.

I was seeing the CPN every couple of weeks since July 2012. It was a big support for me but now, that’s gone away and there’s not the same level of support in adult services. This is making things difficult for me at the moment and I think that it is something that should be done more gradually (such as the adult team should offer you appointments with a CPN for however long necessary after the transition takes place).

I want to make the CAMHS to Adult transition a smoother, easier and more personal experience for 18 year olds who are going through it. 

I think that this is a flaw in the system and leads to unnecessary distress and that it is an area of mental health services which could and is in need to be improved.

I want to make a difference – I want my experience (which was and is mainly negative) to help make other people’s experiences much more positive.

So, my aim is to make the transition between CAMHS to adult mental health services easier and smoother.

And I also have a secondary aim – to provide CAMHS service users with age appropriate information about mental health and the services/treatments available to them. I feel I was uneducated about everything and the only information I was given was when I was 16, first diagnosed and not sure what anything meant.

But, I cannot do this alone. I am going to need help.

I would like to create a “team” of people who are “in the know”; CAMHS and Adult Mental Health staff {psychiatrists, psychologists, CPNs, occupational therapists}, GPs and other healthcare professionals who are passionate and knowledgeable and want to make a difference about changing the transition betweeen CAMHS and Adult Mental Health Services.

I also would like to speak to any other service users who have gone through the transition in the past 12-18 months who are willing to talk to me about their experiences and also to service users who will be going through the transition in the next 6 months.

I want to make a positive difference to people’s experiences. I want people to be happy with the care that they are receiving from mental health services including the transition between child and adult care. Because it’s important.

I need any help that anyone can offer me!!! Any help/advice/support would be greatly appreciated!

If you can, please email me at fromcahmstoadult@gmail.com  or DM/Tweet me @CAMHStoAdult

Thank you so much!

P.S. I’m very sorry if this doesn’t make much sense, my thoughts are racing but my intentions are correct… I am willing to answer any questions you might have.

my first encounter with CMHT

Last week I had my first appointment with my local CMHT. I was very nervous about it and also quite sceptical so I went to my doctors’ surgery early in the morning to get an appointment so that after the CMHT I could go and talk to somebody about it (plus I needed to talk about some other stuff too). So with the GP appointment with Dr W booked for 5.10 and the CMHT appointment at 3.30, I decided that I wouldn’t go to school (because I was undergoing some tests for the hospital and it would have been a little bit tricky and a little bit inappropriate if I was to go in) and would go to my mom’s choir and then hang around at home for a little bit to try and prepare what I was going to say at this appointment. I duly wrote a list of all the medications I am taking and wrote a list of all my “symptoms” including new ones that I was concerned about that NO ONE SEEMS TO BE LISTENING TO ME ABOUT. I mean hello? I feel like I AM GOING CRAZY!!! 

So I got to the CMHT base in my town, I have been there before quite a lot of times. As soon as I got there I was called in by the psychiatrist and was taken to a room where there was a psychologist too. I gave her the list of medications and stated that I wanted to change my medication because it’s a pile of crap, not helping and making me feel like shite. She spent A LOT of time looking at all the communications between CAMHS and my GP. I tried to tell her all my new symptoms and what and why I was concerned about. She didn’t seem to take it all in and I was aware of that throughout the appointment. Anyway she came to the conclusion that I was doing better, had improved and probably didn’t really need to be seen and I’m thinking “WTF I’ve just told you I feel like I’m going out OF MY MIND!!!” At this point I was so glad that I had an appointment booked with Dr W because this girl needed to vent. And the request to change medication… Completely ignored. My dose was reduced (WTF once again) and the psychiatrist said she wanted to (if she decided to take me off the one I’m on now) try something that was on for a year, didn’t particularly help and I have been off for 9 months. WTF. The psychology side it was decided that I could have one to one CBT after my exams in June… Eugh, the thought fills me with joy. 

By the end of it I was so glad that I had an appointment with Dr W so that I could talk it over with her. So off I went and vented my frustrations, ended up in tears and she could see how frustrated I was (oh and school have started to be dicks too but that’s another story so I was telling her about this too and she was very unimpressed.) 

She said her and Dr B (my normal GP) would have a chat on Monday about the best medication for me and that we would work as a team together because they are the only people that are putting in the effort right now and who I trust with my life. She was so nice, as always and I always think I want to see her every fortnight rather than Dr B because she’s so calm and patient and comforting whereas Dr B, who although I trust so much and am indebted to her after she has saved my life SO many times can be harsh and I can come out of those appointments feeling deflated and upset. 

On Friday I was still feeling pretty fed up by the fact that the psychiatrist had just ignored my frustration and worry about new symptoms so I decided that I would write a letter to Dr W  talking about the symptoms (because I don’t feel I articulate them properly when I’m speaking to her). I felt guilty doing this in a way because she is not my usual GP but I thought that she would receive it better than Dr B. Now I’m dreading tomorrow when she will go into work, open the letter and then, I’m hoping she’ll give me a call to talk to me about it all because I really need to know that somebody understands and gets what I’m worried about. But I am really nervous and scared about it all. 

 

So, that was my first encounter with CMHT. I was not particularly impressed if I’m honest. It’s my last appointment with the CAMHS CPN on Wednesday and I’m not really looking forward to that either. Oh it’s such fun having a mental illness. 

I’ll keep you posted… 

a little bit of background information.

So, how did I end up in this situation?

Well I’m 18 years old. I am in my last year of school so just about finishing off my A-Levels and hoping to go off to university in September.  That is a daunting thought for someone who hasn’t got a mental illness but for me, leaving my home and leaving my family, friends and leaving my doctors (although I have a plan to get round this one) is doubly scary.

I was first diagnosed with my mental illness in January 2011 although I know it had been going on for a lot longer than that.  That was just when I plucked up enough courage to go to the GP surgery and admit that something was wrong.  My parents were not involved then and they are not involved now purely because the inklets they have found out about (like through school who don’t believe in confidentiality whatsoever) they have been very unsupportive.  Anyway, this blog isn’t particularly about that but it’s about the transition period between CAMHS and adult services which I what I am just starting to go through.

When I first went to the GP, I refused any counselling.  I was given medication which naively I thought would be a super cure; I could just take them and I’ll be feeling better in the next couple of weeks.  Well two years later and having gone on 3 different medications and 2 different types, I’m still not feeling better; in fact at times, worse.

I was first referred to the CAMHS (and specifically the service which is for 16,17 and 18 years olds) when I made a trip to A+E.  This was in March 2011, just before the most important months of my life, so far; GCSEs.

My first appointment with the service was a couple of weeks after referral.  I met up with a psychoanalytic psychotherapist who was my care coordinator who decided the best course of action for me was alongside the medication to have some sessions of CBT with a psychologist.  I had about 8 sessions with the psychologist and they were hard work (perhaps I’ll do another post about CBT and my experiences of CBT sometime).  I used to dread going to those sessions because I found it so difficult.  After 8 sessions and in September 2011 I was discharged from the service back to my GP (who I was seeing throughout and who was prescribing my medication). I was never given an appointment with a psychiatrist which I apparently should have been.  Sometimes I think I could be better if I saw a psychiatrist and my medication was sorted out properly back then.  No disrespect to my GP of course, she’s amazing and I don’t think I would be here without her.

I still see my GP every 2 weeks (once a week at times when I am at my worst).  In June 2012 when I was really, really terrible.  My GP decided that I should be referred to the service once again and she signed me off from school for 3 weeks.  I was seen pretty much straight away by the same psychologist who had done the CBT with me and we went over some of that work however she left the service at the end of July.  I have a different care coordinator this time round; a CPN (community psychiatric nurse).  She sees me every couple of weeks to catch up.  I don’t have the same relationship with her as I do with my GP.  My GP has known me and my family for a very long time so we are close.  I still trust her and her judgment however.  This time round I’ve also seen a psychiatrist quite a few times.  My meds were changed and seeing as they’re not particularly working I’m hoping they’ll be changed again before I am moved onto adult services in the next few weeks.  This time round, my GP and I have not been particularly impressed with the service (my GP saying that she wouldn’t refer another young person to the service – which is a shame because I think it has great potential and I’m sure that for other people it’s been fine and brilliant).  Quite often my appointments have been cancelled and they have been tardy in sending their letters to the GP for the correct course of treatment.  The last time I saw the psychiatrist I was told my discharge would be at the end of February and I could either be discharged just for GP treatment or they’ll refer me to the adult team.  Well it’s been decided that the adult team it is and I should be receiving a letter soon.  I’m not particularly sure what to expect because I have heard such negative things about community MH teams around the country.

So, that’s about it for now.  The story continues to unfold – adult mental health service, here I come!