Nick - Interview 02

Age at interview: 74

Brief Outline: Nick and his wife have cared for their son with paranoid schizophrenia for almost 12 years. In the beginning Nick didn't feel heard by health professionals, but today he is very involved.

Background: Nick is married with two grown up children. Originally from Sri Lanka, he worked for a news agency before retiring and is now working on mental health issues in a voluntary capacity. He became a carer at age 62.

More about me...

Nick is 74, and is living with his wife just outside London. They have two grown-up children, a son and a daughter. Nick retired in 1989 aged 55 after having worked in the news industry. For the last 12 years Nick and his wife have cared for their son Nathan who is diagnosed with paranoid schizophrenia.

When Nathan was a teenager, beginning university, his parents started noticing strange behaviour. They were told by health professionals it was nothing to worry about.  Even when signs became clearer and they provided written information, they were not heard. They were obliged to believe the clinicians' judgement, which allowed their son's condition to go untreated, which led to a suicide attempt in 1995 when he slashed his throat. After emergency hospital care, Nathan convinced health professionals to release him into the care of his parents.

Nick and his wife did not know much about mental illness at the time and were not any given relevant information or told what to look out for, or how important it was that Nathan took his medication.  Over the years, there have been times when Nathan has avoided taking his medicine. This can result in violent behaviour and he has attacked Nick, and others, several times. He has been in hospital since his last violent episode in late 2005. Today, Nathan's condition is improving and Nick and his wife are hopeful that we will be released from the section in the very near future.

Nick feels strongly that carers need to be trained and supported. Family members are expected to provide care in the community without being educated about even basic mental health issues. Nick felt unprepared when he became a carer, and with the right information his job could have been much easier. 

Nick is sure it was drug abuse that caused his son's mental health problems. He emphasises that it is important for school teachers and others working with children to learn about these things. Today, Nick has learnt a lot about his son's condition and is now involved in the medical care of his son. He is taken seriously by health professionals and works together with them. He has developed a very close relationships to his son.

Stigma and fear can make it difficult to be open and talk about mental illness, and for a long time Nick and his wife felt they couldn't tell family, friend or neighbours about the details of their son's illness.

Carers' groups have been very helpful for Nick as a place where people can learn from each other and help each other. Nick strongly believes that education of carers is key to helping both carers themselves, and the people they care for.

Just as doctors need education to treat a broken leg, carers need education and support to look...

Health service, my main concern, about carers is that, I'd say, supposing one day I used, as example, I don't know is the right thing to do. Suppose you've got a broken leg, would you allow this broken leg to be treated by a nurse who is not trained at all? You won't. But how is it that you allow a person who is mentally ill, you don't know what the hell's going on inside their brain, and you say, send that person to a house and say, tell the mother or father to look after them, without any training whatsoever. Where is the logic in it? I can't see this is, but' it's terrible. Would anybody with any commence sense, educated people, qualified people -medically- doing this sort of thing? I don't know where they got it from.

Carers, there is some things done for the carer, but on the education side of the carer is the most important thing, because schizophrenia is not a short term illness. Because a patient may have to be with the parent or parents, in my case it's twelve years, in other cases it's more. So what education do they need? What is the support they need? Now, when I go to meetings and all' 'you are a carer, what do you need?' they ask. I get so mad. I says, 'you are a director of services, forget that, imagine that you have a son who is psychologically ill. Say he's a schizophrenic or whatever it is. You are a carer from that time onwards, what do you think you will need?' I don't have to say it. It's a common sense thing isn't it? I must know how to look after the patient. I must know what is actually known, what other medications he's taking, what are the side effects. If he gets up at two o'clock in the morning and say this or that, how am I going to deal with? Am I equipped to deal with that sort of thing? These are the things you're going to deal with.

When living in a supervised home, Nick's son managed to avoid taking his medicine and relapsed.

Yeah, it is sheltered and supervised. But so they had the responsibility to supervise that he take his medication. That was one of the conditions he was staying there. What he used to do is quietly put the time back and back and back with them by saying I'm watching this and I'm watching that on TV. Finally it ended up that he was not taking the medication. Those people didn't know the importance of taking medication. They weren't told. I had warned them that if he doesn't take medication he will become violent. But yet an enquiry took place, they had told the council person who were enquiring, because this building was under the Council, that they were not aware that he would be violent. They want to cover themselves I suppose. But I pointed it out in my letter and gave copies etc, such a letter sent such a date to the supervisor, or manager of the place that my son could get violent if he doesn't take his medication. And even, more recently when it happened about a year back, a year to 18 months back, medication again, they were all surprised why he started beating people up. Then I went on the web site and I found that a reaction to non medication is called, what is it called? Reaction? I've forgotten the words. It is a sort of a violent, they get an episode.

Like a rage episode?

Yeah, which is worse than an ordinary episode, because the medication itself creates that sort of psychosis. It's called a rebound psychosis.

Rebound psychosis.

That is what happened. And it happened twice. And the second time he beat up virtually everybody inside. He went inside a ward. And he just thrashes it, he gets up, walks around, sees anybody near, you know, hits them. And still he was the one of the most docile blokes' he wouldn't lift a finger to anybody. So that is what happened. Now since then we've been looking after him. Now it's a little better at the moment, he's still on the ward, still under section because the last time he beat somebody up.

Despite the attitudes of professionals, Nick involves himself but always asks his son's permission.

Oh, clinicians do, they're' they say oh we can't talk about it, it's confidential. How are you going to, in my son's case, they never had asked him whether, would you mind if your parents know what was going on? They never did. The letters say that just, it says of course we'll have to get his permission. But they didn't say whether they asked for his permission or was refused. He wasn't. And that statement alone by both two letters, both letters gave a similar sort of meaning. Say we haven't asked but you know. More or less imply that they may have etc. So whenever I notice that there is, 'look I'm going to forward this information to the doctor, is it all right with you?' Because his concentration is very low, we spend about a minute, 'it's OK' then, that's it. But I have never done anything without telling him. Because I say 'it is for your own good, if we don't say these things, I know you're not talking to the doctors, at least let me do the talking'. Because the carer is with the patient 24 hours a day, seven days a week. Who knows better? If it's a caring carer I mean. If it's not a carer who wants to get' send him off to a, you know, to a ward or something, that's a different matter. But most of the carers are not like that in this country. They want to see their son or daughter getting better.

Nick's son has had little psychotherapy; and he thinks there is a dearth of psychotherapy in...

The point is, in our system there are no, there's not enough psychological input. No psychotherapy as such. Is really very little. Now my son has been seen by psychologists, but only two sessions.

Really? Over the twelve years?

Yeah, in that ward. And that doctor was very good, but he did stir it up a bit for him. But that man left for a nicer job in America. And the next psychologist, he just come in the post now this month, and hopefully he'll get a chance. You see, everybody knows that this is a mental illness, that he'll need a lot of talking to get it out of you or whatever it is. But there's no money in studying the proper psychotherapy. So even the Prime Minister recently said there's a lot of people with depression and all and therapy will help bring them back to work. Well where is the money? He's not investing any money for psychotherapy. There are no psychologists on the ground, this is the problem.

He raises the question of whether a person's recovery or human rights should be the priority.

In passing may I mention this' In places like India, the family involvement is the norm. Clinicians expect and even demand the co-operation of relatives because it is expedient financially and otherwise. Medication is made tasteless so that it could be given to the un-cooperative and 'recalcitrant' patient mixed with the food. So the question of non-compliance and its attendant problems do not exist. One would ponder here about what takes priority - the recovery of the patient or his human rights?

The doctors did not tell Nick about the tests that should have been done on his son or the...

The psychiatrist heard our story having seen Nathan separately and then advised us to send him back to university to continue his studies as there was nothing to be concerned about. He gave us no advice but we know now that a blood and urine test for drugs should have been carried out at the time. 

The two clinicians, who did not take notes - perhaps because they had already decided to discharge our son - stared blankly at us, perhaps implying that everything my wife and I said was a figment of our fertile imagination. We didn't know then that we could have asked for a second opinion and weren't made aware of it either by the consultant - who later told us that cannabis could not have contributed to Nathan's illness!

Nick lost confidence when he was told that his son's symptoms were the result of his parenting.

That would have been after I saw the private psychiatrist, privately, and before he tried to kill himself there was an interlude where we were, my son was a patient in this local community mental health team. The first doctor who saw him was a fantastic man. He knew what he was talking about, but it was his last day in the post. So there is another person who came along. Then of course, same sort of situation took place, where I gave written notes to the senior house officer who saw my son. So she took a look at the notes, looked at me very accusingly and just said' 'wait there, I'll call you later'. Went upstairs with my son, there was a student, medical student with her, came down 15 minutes later, she says 'you Asian parents are over protective, there's nothing wrong with your son, it looks like you got the problems not him, send him back to University'.

So their explanation there was your Asian background basically?

Yeah this is the thing because later on we analysed this and this is, that is where the decline took place, because it also undermined my confidence in myself. To think that two -one senior consultant and this senior house officer- both gave me the same answers to a question, that's been bothering me and my wife, -'something must be wrong with me'. So from that' they didn't tell me that you could have a second opinion or go to somebody else. Nothing of the sort, so we didn't know how the system operated. From there onwards we didn't seek any help, and my son wasn't given any medication of any sort, nothing at all. Neither did they warn us what to watch out for, what he will do, what he won't do. These are the normal things any people with any common sense would do, but this wasn't done. So we didn't know where to go, we just let our son be at home until that dreadful day.

Nick was worried about his son's behaviour, but was told by doctors it was normal.

Oh yeah, definitely, his behaviour was completely odd, because he's a very nice docile chap, he used to be. So I went to the psychiatrist -he was a consultant, privately, gave him a written sheet of paper with everything I noticed as unusual. I saw him reading it and he saw my son for about 10 or 15 minutes, or about 20 minutes, I suppose. And then he called me and my wife and we just repeated what was there on the paper and I also showed a newspaper article. It was a critique of a play. My son said, 'Look it's all about me', and that is unusual behaviour, -for me as a lay man, but the consultant didn't take any notice of it, or rather he just dismissed it and he said, 'Send your son back to university, he's all right'. He never gave us any warning, never told us what to watch out for, nothing at all. Then things got worse and then, going into detail and the one that struck me most was, one night he was working in a video shop, part-time. Then he rang at about 10 o'clock in the night and said, 'Dad, there's a China man waiting outside with a baseball bat going to hit me'. And then, and I thought things were no good. I went, or I wrote to the consultant and he says I notice that you're worried about your son, I'll see him but will be '60 for half an hour. He wasn't worried about why my son got bad etc after seeing him, or nothing. I thought it's useless at getting on with this man, so I brought him home and after the holidays we signed him up at another university nearer London. There too he used to say I can't stay in this room, people are plotting against me, and this and that. There he used to move from room to room to room to room. Finally we got so fed up of it we bought a place for him, just two, three minutes walk from the campus. There too he was very concerned about security and all that. He wanted the back door locked and wanted new locks put in the house. Once when I went around he locked himself up in his own room and wouldn't let me in for about two hours. So I said OK, I will change the locks, then he opened up the door and we were all right after that. Then one day he was supposed to come home during summer holidays, he says I'll catch the tube Dad, from [name of station] and ten minutes later he rang and says 'I can't make it, I'm too scared to travel'. So I went and picked him up, came home, one week later he tried to kill himself. That's how from that day onwards I'm a carer.

His son got difficult side effects from his medicines.

Fortunately for us the web sites came in now. There's a mine field, they've got stacks and stacks of information that you can read. You can even tell the clinicians I have read this. I have had certain occasions when I have had to take out print outs from the web sites and send it to them. Look these are the side effects. Because my son, he was on clozapine, which is the best medication they say for schizophrenia, and the side effects were so bad that he used to block the toilet every time he went, which was once a week, or two. It was so bad and he was using Vaseline and things. I said, what, - he was on a vegan diet, I said, 'you are not eating the right thing, they need to-' 'You don't know what you're talking about Dad'. If he had told me that he was having constipation problems, I would have told the doctors. But if you don't tell them they don't know. This is what I'm saying. So once I went to unblock the toilet, I thought this was bits of stone in it, black stone. It was that colour. And finally, they cut it down and they had to change the medication and this and that. But now he's back on it again, because that is the only medication that really works for him. There are other things that they're going to give to counteract the side effects of this. And then he salivates quite a bit as well and saliva, that's another side effect. So I remember that consultant psychiatrist told me that he knew of one patient who had to have surgery on his stomach because the constipation was so severe. So you see what these people go through with medication.

Initially, Nick got little information from the CPN.

The CPN popped in and out having given the necessary weekly injections. She was pleasant but told us very little. She refused to discuss anything about our son unless he was present! We now know that she should have done something about counselling etc and pointed us in the right direction for support. It was only after a couple of months that we heard about a carers' support group in Wimbledon purely by chance.

Nick was unprepared for looking after his son when he was released to his care.

Maybe about ten days afterwards, in the hospital, there was a locum psychiatrist who was himself back from a stay in hospital for depression. He says, there was a little argument between him and the registrar and the registrar said you can't release him. 'Oh I'll take the responsibility', because my son had earlier worked on this man to come home. And he said all right I'll go and stay with my Dad, it's' so he just called me and said I'm releasing your son in your care. Didn't call me to one side, give me five minutes and tell me what is involved or what is not involved. Did not ask me whether I am prepared to do it or that I can handle this patient at home. Nothing of that sort, just you know. And then the registrar lady told him that he had, the pills that were given to him were under his pillow, he wasn't taking the pills. He was suspecting all of these people inside the ward of being' conspiring against him.

So he didn't want to take the medication?

Exactly, so that is why the registrar said he's not right to go home. So knowing all these things, clinician to discharge a patient in my care who are completely oblivious to any mental illnesses or what it involves, that's the type of people you have. You see, they were going by the book. What I'm saying is, most people in this business, if they use their common sense, even about confidentiality, use the common sense, what is a carer? A carer has to look after this patient. That means that they do the same things or more, than what a nurse did in a ward, but at home. Now there is no training for these people -at least a little bit of advice, or a gentle, you know, make them aware of what his mental illness is, that he could become violent. Now later on the violence also came in but we were not warned of that.

He says GPs should know more about how to pick up on mental health problems.

And the other thing is where they can pick it up early is at the GP's surgery. How many GPs are aware of mental health? How many are qualified? It's a minority, absolute minority. If they did their job properly they can pick this up very early. Early intervention is worth it you know, thousands and thousands of pounds when it comes to doing calculation on the disasters those thing cause. You can pick it up early and treat it early and stop the nonsense. You see, GP's are self employed people. They only do what pays them better. They don't know or they are not interested, not really interested in mental health. Those who are, are excellent. I know a few who are absolutely marvellous. But this is the problem we have.

When his son stopped taking his medicine he ended up hitting Nick.

Now this I learned later, that tests, if someone, an incident like that taking place, it's for them to -the clinician's responsibility is to do a test to find out why this boy reacted, or anybody reacted. If they had done a test, then they would have found out that he wasn't complying with the medication. That is the reason for this violent behaviour. When it happened the second time, about a year later, something like that, same sort of thing, he hit me on my head and there were bruises' and then he ran out without me. Then my wife was there, my daughter wasn't there. My wife said I will call the police to be honest with you, he had carried a big bunch of keys and threw the keys down. Ran out of the house, beat up a fellow who was doing his gardening innocently, and then that fellow has rung the police. We also had rung the police. When the policeman tried to get hold of him he had a swing at the policemen. I think the policeman avoided it, the blow, and he was in hospital. Sorry he was taken to the local police station. Police came and said he's with us now etc. This is a while ago. I sent him something to eat because he hadn't eaten, you know. I thought it was maybe this. So later on we found, -when this happened he was living with us-, upstairs. I went and looked in the room, there's about eleven days medication untouched. That's the reason for this. There's a thing called level test they take to see how much medication is in his blood system. They know whether he's been taking it or not. So that, then I told the consultant this is the set up, then I suppose, I don't know whether she agreed or not with my reasoning. Anyway, we knew it was the reason, because it happened subsequently.

Nick describes how the stigma of mental health problems affects families and communities.

Talking about stigma' it is a well known fact that many in our community are 'mental' about mental illness which is why the majority of carers stay 'hidden'. We talk in whispers about schizophrenia just as they did about cancer not so long ago. We are ashamed to say that we care for a mentally ill person at home. We avoid attending carers' support groups where there is someone there you know or is from your community or is a neighbour. Relatives and friends avoid us (equally we try and avoid them) and the lives of siblings are blighted with the prospect of finding a life partner becoming a serious problem because many of us think that mental illness always runs in families.

Nick sometimes says his son has depression because it is more accepted than schizophrenia.

It's, well, the usual thing isn't it? In our community, especially in Indian and even the black community and others this is a stigma. Those days they used to say 'cancer', but now they say it openly because it's an accepted thing, it's nothing, it's not a, you know, communicable disease or anything like that. But the people that you know, now we had to tell so many fibs, when they say what it is? I would say, 'Depression'. It's a respectable term relatively speaking.

Depression is better than schizophrenia?

Yeah, apparently Churchill was also a depressive. So that is more acceptable than anything else. And in any case, they, people suffering from depression, even manic depression, can and are able to do a damn good job of work, you know. I know that personally. So, but not a schizophrenic. So we had to say that and of course our relatives, close relatives and -unfortunately we don't have many in this country, only my wife's sister, that's all, and her family. Even they, she was kept from the truth quite a while, until recently.

He suggests that new cares should be given carers' packs, that they should be kept informed and...

Carers' packs are now being made available. These packs should contain as much helpful information and tips in dealing with difficult and unusual situations. Some of us have years of experience but consider the plight of anyone who became carers last week for example. How will they deal with a crisis at two o'clock in the morning? Have they the knowledge and the expertise to carry out the all consuming task of caring at home for a mentally ill person? Before a patient is discharged into the community, there ought to be some preparatory work organised by clinicians to help relatives continue the work of caring at home. Psycho- education and other pertinent help should be considered. In fact, carers should be part of the treatment team from the time the patient enters the ward because mental illness affects the whole family.

When carers get together they support and learn from each other.

The positive thing is, when carers get together, that's a positive thing, because you know you bounce ideas off each other. One learn from the other etc, some of them come, they are crying you know, hard time. There was a police inspector who, where his step daughter -he came to one of the meeting. He heard about it and he came and he started saying this and that' she behaves like this, behaves like that. And I asked that questions I said, 'What about the GP'? 'Oh she has a different GP to me. And he wouldn't see me because she's an adult'. I said, 'What are the problems?' He said she was raped twice under drugs and this and that, and that had really upset her mind and she shouts at everyone. I said, 'Write everything down on a piece of paper. If your daughter is going to see the doctor tomorrow, go the day before and put this piece of paper under his door and we'll see what happens'. Do you know, within two weeks that girl was under the care of a consultant. Because it was evident from that, that this girl was not telling the GP anything at all. Just going and mumbling and this and that. But how can you say to people, some girls, for them it's difficult unless you get to know the doctor very, very well. Or if it's a lady doctor. So eventually it happened. So tips like that help.

So because of the carers group'

That's it, this is it, but you can also, there is also in that same group, that one fellow was on the same medication for ten years until we shouted and said, 'What the hell are you doing?! Get some other doctor, there are plenty around'. So his medication was changed as well. So things like that happen. And you can get tips and all that lark. And that is what a carers group's all about.