Psychiatric review descended into chaos - now what?

For issues specific to caring for someone with mental ill health.
Excuse any typos - sitting here with tears rolling down my face about the whole sorry situation we have landed in.

My son has been having problems for nearly 18 months. It started with him getting aggressive and secretive, having trouble sleeping, and seeing a decline in his concentration and attainment at school. He has always been a little different to other kids, showing quite a few ASD-like traits, but we have worked through his difficulties and helped him develop coping strategies, so I wasn't overly worried initially about the change. After all, teenagers are teenagers, and I had already seen 2 go through the hormonal stage. It was a little different, as we were going through quite a tough time - my dad had been diagnosed with terminal cancer, and I was in the final section of my teacher training (in a school that was deemed to be failing by OFSTED), so we were all stressed, and I just assumed that it was all connected.

By April he had become much worse - he started self-harming, had made plans for suicide attempts, and was suffering with general anxiety all the time. Unfortunately just after this my dad passed away, so although we contacted CAMHS and diligently followed their recommendations, I am ashamed to say that he was not on the top of my worry list. Bereavement/hormones/OCD tendencies we were told - and I believed them. We were sent packing with sertraline and family therapy and told to get on with it.

Life quite quickly descended into a nightmare, with suicide watch going in to full swing, police calls when he really lost the plot (threatening to kill me and himself), a crisis package from CAMHS that consisted of 2 people coming out twice a day (and doing naff all), and our lives started to fall apart. I had to rant and rave to get a review with the psychiatrist, and when it finally came in August, she was rude and dismissive, blaming us entirely for the fallout, and insisted that there was no sign of any serious mental illness. We left that meeting as complete wrecks.

We struggled on and it continued to get worse - still aggressive, totally withdrawn for social interactions with his friends, bizarre behaviour, and by October it got to the point where none of us felt safe and I rung social services to say I could no longer cope. This threw us into the child protection assessment process, which I was scared stiff off, as I have 2 younger children, but actually turned into a really useful tool. The lead social worker was a gem, and my son finally opened up to him. For months he had been having visual and auditory hallucinations, and he was struggling to tell the difference between what was real and what was not. He was petrified that he was losing the plot. The social worker got in touch with the family therapist at CAMHS, and they arranged to have my son reassessed by an Early Intervention Psychosis team from adult mental health (run by a different health trust).

We had to soldier on until January, but eventually the day came. Listening to my son speak so openly about his experiences was heart-wrenching, and the team were quick to decide that they were going to take him on as a client. The CAMHS YP lead-nurse was there for the whole assessment, and she actually apologised for not taking us seriously before.

So anyway, there was our little light at the end of the tunnel. EIP came out to us once or twice a week and have been fantastic with helping my son and our family cope with living with this everyday. They put in for another psychiatric review, based on their observations and our family's accounts - his care worker even went into school to talk to them. From the number of emails and phone calls I was getting, it was quite obvious that neither him or school were coping with the deterioration, so I withdrew him from school and gave up my job to try to keep the whole situation stable. He deteriorated more, believing that we were trying to poison him, that Apple are plotting to take over the world and have place bombs inside their products, having lengthy conversations with the cat, and sleeping less and less due to his paranoia.

A review date came through for 20th April, and we were pretty sure that all the evidence we had collected would ensure we could get the psych onside and move forward with exploring some different medications to help calm the hallucinations and aid my son's sleep.

So, the big day was yesterday, and I cannot believe what I witnessed. The lead-worker from EIP accompanied us, and we were ushered in. From the outset, it was obvious that the psych was p***ed that we had gone behind her back (as the referral to EIP came from family therapy). She was not interested in any of EIP's reports, and kept referring back to her notes from last summer. She basically said that my son and I had over-inflated the situation, that she had spoken to school and they had not reported any unusual behaviour (he hasn't been to school in over a month, so how this was a reliable source I do not know), and that in her clinical opinion there is no mental illness. She even called in the YP lead-nurse (the one who had been at the EIP assessment, and who hasn't seen my son since), who blatantly lied and said she had never seen any symptoms of psychosis. My son became increasingly distressed and walked out, the EIP lead (usually the most placid, soft-talking and calm man) lost his rag and called the psych unprofessional and stormed out, and I was left in a puddle of tears in a room with a consultant psychiatrist who obviously thinks I have Munchausens by proxy!

So we are no further forward, other than to have totally destroyed the working relationship between the adult and adolescent mental health teams. The EIP team are going to seek a second opinion, but I am not sure how easy that is going to be, as I think they want one of their psychiatrists to do it, but my son is only 16 tomorrow, and I don't know where the boundary is for accessing the adult team, as we live in an area covered by 2 different health trusts. I have no idea where to turn to ask for advice, whether I should make a complaint, or what to do. I wish I could afford to go private, but with having to give up my job, and with no benefits as we have no diagnosis, I am barely able to put food on the table.

Sorry for the rant, I needed to get it off my chest. Any suggestions on what to do now would be very gratefully received.
Stephanie, I read that in tears for you and I'm so sorry that I have nothing useful to offer you except my heartfelt sympathy. :cry:
Hi Stephanie
It's a terrible place to be in when you know your child better than anyone else but you feel unheard or disbelieved. You are not alone. My son developed a physical illness on top of his psychosis and I don't think I was fully believed until he collapsed and ended up in intensive care fighting for his life! One thing I have learned is that no matter how hopeless a situation is, there is always a way through. The EIP are on your side and they too are disappointed at yesterday's outcome. Until you get the second opinion, hang in there, your son's visions, voices and beliefs must be terrifying for him. Coping at this stage of your son's recovery is very difficult but you can come through it.
When my son presented his wild beliefs to me I would just listen and sympathise with what my son is experiencing. You might want to say something like, "Although you’re finding it difficult to understand what you are going through, I do realise that you must be very scared, frustrated, or angry". If it’s at all possible, try and minimise the stress and stimulation around the home during these times. Find out the emotion your son is feeling. If he is feeling scared ask how you can make him feel safe. We don't get it right all the time but don't beat yourself up if you make a mistake, just learn from it and move on. Welcome to my world- I'm damned I do and I'm damned I don't!
Things I said to my son were, "I’m here for you. You’re not alone in this. You are important to me, How can I help you?, Do you want a hug? There is hope, You can survive this, When all this is over, I’ll still be here and so will you, You won’t drive me away, I’m not going to leave you or abandon you, We’ll get through this together, I’m sorry that you’re in so much pain. I am not going to leave you. I am going to take care of myself, so you don’t need to worry that your pain might hurt me."
Things will change in time. I believe that recovery for our children is not only possible, but inevitable. We should not be asking "What's wrong with your son?" but, "What happened to him?" I never use the word illness with my son anymore. We talk about his crisis. Your son may have experienced some trauma or traumatic life event he could not cope with. Anyone could begin to hear voices if they were in a stressful enough situation. Don't see him as having a breakdown, but a breakthrough. We know what has happened today, but nobody knows what tomorrow will bring. Don't ever give up on hope.
Warmest Wishes
Anna
PS If he is under the EIP Team he should have a diagnosis of First Episode of Psychosis. My son accessed DLA (PIP for over 16 year olds) with that diagnosis and you should be entitled to some help. Phone the Carers UK Advice Line.
Thanks Myrtle and Anna for your kind words.

I have not given up, just feel frustrated that the psychiatrist was so dismissive, especially as EIP have been working so closely with us. We use lots of open dialogue with EIP, and I am over the moon with the help and support they give us. We were just hoping for some medical support to aid with his sleep as we are all so exhausted by the night time disruption, but it obviously wasn't meant to be.

We'll just have to keep taking it a day at a time.
If finances allow, could you consult a (different!) psychiatrist privately, at least for an initial consultation and assessment, which, if coming from a psychiatrist, may then have to be taken seriously by the (useless NHS) one?

I'm not sure what the drill is in mental health, but in Cancerworld (where I come from), every patient is allowed to request a different oncologist if they don't get on with or see eye to eye with the one allocated by the hospital. It does sound like this psychiatrist you have been allocated is simply not suitable for your circumstances.

I do hope you and your son get the support you both need - kind regards at such a distressing time - Jenny
Stephanie your story makes me so cross! How dare the services turn your son's welfare into a p***ing contest? We encountered a few old-school professionals along the way who were more interested in status/money/power than in getting people well but I thought they were a dying breed. Grrr! :evil: I'm sorry I don't have any suggestions though surely there are advocates (from Mind?) or PALS services that could be of help. I do wish you luck in getting medical support.

Incidentally I recognise the symptoms - the fear of poisoning and the sleeplessness - from my experiences with my son. I am very taken with the idea of open dialogue and quite envious that your team use it.

Anna - I love the gentle unblaming way you phrase things and I shall make more effort to talk like this to my son.
Hi everyone

Heard today that we are on the list for a review with a different psych, but still within the remit of CAMHS, so worried there may still be this play-off situation between the 2 different trusts. I think the current waiting list is about 3 months, so looks like we're in for a long ride.

I have also read on other forums that going private can skew them against you even more, as they assume that if you can afford to pay for diagnosis, you can also afford to pay for treatment privately. Anyone here heard of that before?

This whole shambles is stressing us all to the max at the moment, and playing havoc with my sleep (hence the silly o'clock post). We have my son's Child In Need meeting tomorrow, where I think I am going to face further battles with SS and education, as my son is not going to school at the moment. I determined to stick by my guns though - living with him is much easier to manage without the added stress of trying to get him and keep him there.

My original plan was to launch my attempt to get him an Education Health Care plan (EHCP), which is the new term for a statement, but without anything concrete from CAMHS, I am worried I will be wasting my time and effort. My son and I spent some time today writing a statement for him to read out about the impact this situation is having on our lives, as when he tries to speak at these kind of meetings, he gets all caught up and can't get out what he is really trying to say. I am pretty sure he will read it out and then scarper - it is just too much for him to be in a room for 2hrs with so many people discussing him.

I wish we could feel like this meeting was not going to be a waste of time. Instaed I feel like I am banging my head against a brick wall in terms of dealing with all the "authorities" - I just want to tell them all to poke it and leave us to it!!