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… 

an eventful week.

Well, this week has been… interesting. 

It started off last Thursday when I went to the doctors presenting with a nasty cough and breathlessness. The GP (not my “usual GP, Dr B but another one who has and does look after me well, Dr W) prescribed my antibiotics presuming it was a chest infection and told me it could be asthma. So I went on my way, hoping to feel better by the end of the weekend. 

Well, I deteriorated massively, becoming really breathless even when lying down in bed (which I did all weekend; a mixture of feeling rotten physically and mentally does that to you) . I nearly ended up at A&E to get checked out because I knew that it was not right to be that breathless especially when the antibiotics should have been kicking in by then. I managed to hold off on A&E and decided that I would go to the GP again on Monday morning and thought she would probably give me an inhaler. I also wanted a doctors note which could be sent off to the exam boards for them to consider me getting special consideration, which school think I’m eligible for. Anyway I get to the surgery at 7.45 and it opens at 8. I was first in the queue and got her first appointment for 8.30. I was worried that she wouldn’t be in work that day because it was a snowy day and all the local schools were off and I knew that she has little children who she might have had to take care of. Luckily, she made it in just a few minutes after me. I was glad I could see her because she is very nice and kind and just gentle which is what I think a doctor should be. She listened to my chest which was clear, just like it was on Thursday and I didn’t have a temperature. She then checked my pulse and my oxygen sats. The sats were fine but my pulse was very high (150s). Now, as well as my mental illness, I also have a long term health condition which I will have for the rest of my life; hypertension. I know, I’m so young to have high blood pressure but it is genetic, from the maternal side of my family. Because of this, she wanted me to have an ECG so went to see whether a practice nurse could do one for me. Luckily one of the practice nurses had an appointment slot free to do it for me otherwise she would have sent me down to the hospital. I felt a huge sigh of relief that I wouldn’t go to the hospital… Little did I know what was coming… 

The ECG showed signs of atrial fibrillation. Which is not a very good sign. This considered PLUS my cough, PLUS the breathlessness, she decided that it would be a good idea if I went to the local hospital where they could carry out further tests because she thought it could be PE (pulmonary embolism – blood clot in the lung). She went about phoning the hospital to make sure she was making the right call and let them know what the situation was. She sent me off with a letter and my ECG in an envelope and off I went, to the Acute Medical Unit GP assessment area. This meant that I bypassed A+E which was good news. I called my mom as soon as I knew which I kind of immediately regretted but because school was off she would be wondering where I was. She met me down at the hospital with my youngest sister, A. We arrived at 10:10. I was triaged; bloods were taken, blood pressure and pulse measured, ECG repeated. Then we waited for hours to see a doctor. The SHO (senior house officer) recommended that I had a chest x-ray to rule out infection. So off we went to X-Ray. I had to wear a very unflattering gown :'(. Chest X-Ray came back clear as did the blood test which basically ruled out a PE. Eventually, about 5 hours after arriving at the hospital, I saw the consultant (my mom and sister had left by then) who decided that I should be admitted overnight. He also ordered me a CT scan and an echocardiogram (ultrasound of the heart) because my blood pressure and pulse were still extremely high and I was still breathless. They also gave me an anticoagulant injection before I was sent down to CT. Whilst I was waiting, I called the GP who sent me down, Dr W to update her on what was happening as she asked me to. She was a bit shocked that I had been admitted but was glad I had and told me, as I cried down the phone to her (and not for the first time either) that they only admit patients who are really poorly and that the consultant obviously had good reason. After finishing on the phone with her I went back to the assessment unit where they cannulated me (ouch, nurse burst a vein in one hand and eventually managed to do it in the other hand) and sent me down to CT. A CT scan is the weirdest thing ever. I decided to close my eyes so that it wouldn’t feel claustrophobic in there. They also inject you with this dye into the cannula which makes you feel extremely hot, gives you a funny taste in your mouth and makes you feel like you’re wetting yourself. Bizarre. After CT, I go onto the ward; the AMU (acute medical unit) which is FULL of really, really old ladies who are on their last legs. As in DNR (do not resuscitate) last legs. I got very upset at the prospect of having to spend the night here and luckily one of the nice nurses and the consultant requested I got moved to a nicer ward once a bed was available. My mom and sisters arrived again with some dinner for me (I really did not want the hospital food) and then we got moved to the nicer ward.My CT came back clear but the radiologist expressed some concern about small peripheral arterial clots in the lungs. The new ward was a side ward with only 3 other (older) ladies in there. And it was a nice big cubicle. My dad arrived as the nurses were doing my observations. My family stayed a little while before leaving, school and work in the morning. I saw them off the premises (!) before going back into my little cubicle and proceeding to cry. The male nurse who was our night shift nurse took pity on me and gave me the wifi password which they’re not really supposed to do. Well I doubt many of the old people come in the smartphones and tablets that need connecting to the wifi. 

It was a rough night, there was a man in the side ward next door who was vomitting all night so I had to have my earphones and music on very loud all night. Needless to say I didn’t get much sleep. I felt very anxious that I wanted to go home that next morning but I needed to have the echo first. 

In the morning, the lady in the bed opposite decided that she would like to spend the whole time being sick so I spent all morning walking around the hospital. Eventually I ended up sitting in the waiting room where I had spent the whole day before. I saw the consultant again who wanted to chase up the echo and give me some nebulising treatment (asthma treatment) and a peak flow meter. The nebulizer worked and my breathing got slightly better. As did the anticoagulant injections so I have no idea why they didn’t continue them. I was really, really desperate to go home. I couldn’t bear another minute in the hospital and the consultant could sense that. He actually had limited knowledge about my psychiatric history because Dr W thought it could change what they thought (ie diagnose anxiety/panic attacks when I know already what that feels like and this was no panic attack). My dad and sister, C came along around noon whilst I was still waiting for the echo. My grandma and cousin came at 2pm after my dad left. We decided to walk around and ended up in the treatment centre where the echo would be. I decided to let the people in the cardiology treatment centre that I was an inpatient who had been waiting all day for an echo and I was supposed to be urgent. Well the radiographer said “well you’ve managed to walk up here and so you’re not urgent and we actually wouldn’t see you because you’ve managed to walk here so you can come back as an outpatient”. Well I was so cross after this. I mean I’d been waiting all day for this echo and to be told that I was gutted. I thought she was really rude as well; not the correct way to treat a patient. So off I went back to the ward, expecting to get a slapped wrist for taking matters into my own hands (well no one else was). Well in the end they discharged me telling me I’d have letters in the post about having a 24 hour ECG, the echo and an outpatient appointment with the consultant who was looking after me. I was soooo relieved to go home – I had missed my bed! 

The rest of this week has been a bit of a blur. I have been absolutely exhausted and still am. I’ve been off school sick and when I went back to Dr W yesterday she wrote me a sick note for school (but not the one I really wanted about exams) and checked me over. Symptomatically I’m better although my pulse is still quite high. 

This time last week if you had asked me whether I would more likely end up in a general medicine ward or a psychiatric ward I would have hands down have said psychiatric ward. The prospect of being on a psychiatric ward (which is a very real one to me) has never really scared me however after my experiences in a general medicine ward I am scared of ending up there. Firstly the nurses were quite aggressive to other patients (not me thankfully) but there was an elderly lady in the ward who was prescribed diazepam and they would not give her her diazepam. She was in dire need for it and they shouted at her. It scared me to think that people in the healthcare professional could speak to poorly people like that. Secondly, I found it very hard to be away from my own bed at home and quite frankly away from my family in the knowledge that they were at home without me. And thirdly, the waiting around was terrible. I don’t know whether it would be any different in psychiatry but I waited around all day for something that is being done as an outpatient and I could have gone home in the morning rather that in the evening which just made things worse.

Also, the doctors could sense my mental health issues even though not knowing them and even though they did everything they could to help me it was as if they could sniff it from a mile off which freaked me out. 

So, if only one good thing has come from this experience it will have to be that I am going to try my utmost best not to get admitted to a psychiatric ward. Which basically means I’m going to be working my butt off to get better :o). Well, I’m going to give it a go :). 

In other news, still haven’t had a letter from adult community mental health team which is stressing me out immensely. I’m sure when they see that some one is being referred by a psychiatrist it must be urgent!!! GRRR! Anyway I shall let you know whenever that comes through. I shall be seeing my CPN on Wednesday next week and my normal GP, Dr B on Monday morning. 

Oh and many congratulations if you made it all the way to the very end and thank you very much for reading! I know it’s not particularly mental health related but I am mental health related and it’s happened to me this week so I figured I wanted to write about it. And I wanted to write about it for my own sake too! 

Have a great weekend! 

you can follow me on twitter here: https://twitter.com/CAMHSToAdult