You have what’s called schizophrenia, and there is no cure.
Well this was an interesting one. I’ve had to learn to spell schizophrenia for this post!
Many of you know that early last year, my 48 year old brother was taken to hospital under section two of the Mental Health Act, where he spent some time getting the help he so desperately needed. We managed to get him moved from his cold, damp council flat, to a new much smaller, newer, and easier to manage accommodation, that is closer to me. He has care through Mencap who provide a 24 hour on site service for him, while still encouraging him to have independence anyone would need. We had to fight for this. Really hard. Read the early story here.
He was sectioned in May 2016.
He spent a while in a rehab ward to give us some time to find more suitable accommodation. Then we moved him into his new home in September. That’s a year ago. During that time he hasn’t had any contact with his consultant, and he has, once again been left without a social worker.
He has a monthly injection, which I was told was to help his psychosis. It’s given by a nurse at his local surgery, and every month he asks if he needs to keep taking it. Every month we don’t really have an answer for him. He thinks as he is ‘better’ then he can stop taking it. I thought it best if we find out exactly what is going on.
Once he had left, he was no longer their concern.
Once again we had to push for him to have a review. It seems like it’s out of sight out of mind. Medicate and move on. The consultant wouldn’t talk directly to the Mencap team who look after him about booking an appointment, she could only write to my brother. When he receives mail, the team open it anyway as he very often doesn’t understand what he is reading. This took two weeks to arrive, the team still had to call to book an appointment. The time and wasted money spent on this is ridiculous.
So, a year after he moved, I took him for his appointment.
‘Well, Adam, I have to say you look really well. Very cared for!’
He does, compared to how he was when she saw him last, which was an unkempt man with scaly skin, and dark circles under his eyes, shuffling around talking to himself.
‘Adam is concerned over his medication….’ I say.
(We know he needs to take it, but he needs to hear this from a Doctor.)
‘Well,’ she said, ‘As I explained last year, you have schizophrenia, and there is no cure.’
JESUS CHRIST!!! (Ranty moment…. insert big angry emojis and explanation marks here!!)
This consultant, who, without her finally helping with his Section we wouldn’t be where we are now, actually tells an AUTISTIC person, that he is Schizophrenic and there is NO CURE. She then ‘explained’ about Dopamine and what the medication does. To him. She spoke to him.
Useful. Very useful. Not.
He had his eyes screwed up and closed.
He does this when he doesn’t understand, or doesn’t want to listen. She may be able to prescribe meds and diagnose serious mental health issues, but she didn’t seem to know how to actually talk to the patient in a way he could understand. He sat there fidgeting and shaking his head.
What shocked me at the time, was at no point were we aware that he has Schizophrenia. Lots of googling has now been done!
Does it matter in the grand scheme of things?
Does it make any difference that he has a label now and we know what the problem is? No, not really. It wouldn’t make any difference to him. He has just about become comfortable explaining to people that he has autism, I doubt he could pronounce, or even remember the word schizophrenic. I’m sure if he told people that he was, they would look at him differently. Not in a good way either. We will just stick with the Autism.
What actually mattered to me, was the way in which the consultant only had concerns for the condition and the meds, and had no real comprehension of his underlying Autism. He couldn’t process this news at all. He certainly didn’t want to be told this is medication for life. For him, time is seen very differently. He finds it difficult understanding that people age, and health changes that come with it.
So, to tell him that his medication is for life, isn’t helpful. Thank heavens I was there. I had to suggest that maybe we could look at this again in a years time? We all know he will be on continual meds, but for him, he needs to work one step at a time.
I won’t go into the fact that many of these Doctors/Consultants are usually only interested in the meds, and have no idea about diet and more importantly hydration.When he drinks more fluids, he’s much more lucid, regardless of the meds or his label! It’s the same for everyone, but more apparent with him.
Fix the things you can. Leave the things you can’t.
The upshot is, he knows that he will be reviewed in twelve months. We know he has a condition which explains his behaviour over the years, and that there is no point in wishing he had been diagnosed earlier. If he had, then I’d have nothing to write about, and I wouldn’t be able to bring awareness to the situation affecting many others.
We have to address the things we can change, and not stress about the things we can’t. A real test in mindfulness, and realising that it sometimes is three steps forwards and two steps back, but that’s just how it is.
I am grateful to the support I have had, although I’m very aware that there are many people stuck in the system, or not even in the system at all, that haven’t got as far as we have in the last couple of years.
Onwards and upwards!