Georgina - Interview 06

Age at interview: 62

Brief Outline: Georgina's son first became unwell when he was 15. He suffered hallucinations and delusions, but now lives independently, and both he and the family have a range of support in place. Georgina is a published author and works as a consultant.

Background: Georgina works as a consultant, trainer and advocate. She has been a mental health service user and a carer to her youngest son, who developed paranoid schizophrenia at the age of 16. He is now 35. Ethnic Background' White British.

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Georgina describes life before she and her son had any contact with mental health services as ‘horrendous’. She had a call from her son’s history teacher when her son was 15 saying that she was worried about her son’s mental state. Georgina had noticed her son was ‘changing’ but had ‘put it down to… being a teenager’. It took another 14 months for Georgina to get help for her son. She describes how he would go out on his motorbike and just ride with a crash helmet but no other protective clothing, and says that he had ‘virtually no friends’ at this time. He had a crash on his bike, but he said that the ride ‘blows [his] thoughts away’. Georgina wanted help from the GP but this was difficult; eventually when her son was 16 a friend came with her to the doctor’s. Her son was talking to himself and ‘couldn’t follow a reasoned argument’. Georgina describes how her son was 6ft 2 inches but weighed only 8st 2lbs. Eventually she was able to get a social worker to her home, and her son was referred to a psychiatrist who diagnosed him as having a ‘thought pattern disorder’. She says that they entered the ‘wilderness years’ because life just went ‘on and on’ without help. She recalls that his being put on anti-psychotic medication was ‘just as big a shock as when he became psychotic’ as he went from a ‘very, very angry young man’ to someone who was like ‘a zombie with lead boots on’. For the next seven years she was ‘grief-stricken’.

 

After his brother left home, Georgina felt that her son was getting worse' he thought the television was talking to him, and that his thoughts were being broadcast. He reportedly had ‘horrendous’ hallucinations and was admitted to hospital. After five weeks he was moved from hospital into rehabilitation for five years. Finally, the psychiatrists prescribed her son Clozaril and he did improve, ‘not to the extent that [she] wanted him to improve, but he was better’. At this stage her son got a part-time job and spent another 2.5 years in supported accommodation. He was about to move to a brand-new flat close to the family home when there was a protest about the accommodation. Security lights were smashed and a letter was published in the paper. Georgina wrote about this episode in a book she published, in the chapter ‘Welcome Home’. She describes another incident in which her son was in a local swimming pool and she received a call from the police saying that a head teacher had called them as her son was standing at the side of the pool near to the children. Despite her son’s not doing anything, he was reported to the police as a threat and Georgina describes this as evidence of public ignorance, and an incident that caused her son considerable distress. After this time, her son was on Prozac for a year.

 

Her son has been accessing direct payments for 5 years and has had 5 personal assistants in total. Unfortunately one assistant embezzled £400 out of her son’s bank account. Georgina describes the stress she has been through and says that she herself has been on Prozac for ‘many years’. She says that the hardest thing is to see her son suffer and not to be able to do too much to help him. She says that the most important things in recovery are ‘love and support’, good practitioners, the right medication and even pets.

 

Initially Georgina found it very difficult to get information and support, and has helped other carers find these, particularly in respect of the Direct Payments scheme. Her son has had a talking therapy called ‘Concept of the Other mind’ and they have had family therapy and went to a carers’ support group. She has published extensively on the area of mental health and works as a consultant in mental health. 

Georgina couldn't get the proper help from her GP when she knew her teenage son was starting to...

I wondered if you could start off by telling me what life was like with [your son] before you had any contact with mental health services before …?

 

Oh horrendous is the answer to that to be quite honest. I had a phone call from his history teacher when he was about 15 saying that he was very worried about [son’s name]’s mental state. We’d noticed that [son’s name] was changing and, and acting a bit strangely at times. But I put it down to, you know, being a teenager, and, and, so did my husband. And it took sort of about another fourteen months before we actually got help for him. I went to the doctors. The first time he said, “You’ll have to get your son round here.” And I tried to explain to him that my son was six foot two and, that [son’s name], if I said to him you need to see a doctor, he would say, well there’s nothing wrong with me. Why would I need to see a doctor, it’s you that’s mad, not me. He actually went out a few months after that, so he’s now about fifteen and a half, getting on for sixteen, and bought a motorbike and would go out on it every night with just a crash helmet. He had no friends by then, just a crash helmet, no protective clothing and he was actually knocked off of it on the A128 and had sixteen stitches in his leg. I used to plead with him every night not to go out on it, and he’d say, “You don’t understand. It blows my thoughts away.” So he was trying to get rid of what was going on in his head. And there were two other... appointments with the GP. The second time, he said, “Unless he’s a danger to himself or someone else, there is nothing I can do to help.” Why things have to get to that sort of dangerous stage I would like to know, when it’s just a matter of writing a referral letter. And then the third time, he was then over 16, and a friend came with me to the doctors. Because he came home one day, and he was, standing in the middle of the lawn, and it was raining so had, that the, the rain was bouncing back up again. And he stood there for about an hour, and he was absolutely drenched to the skin. Long hair at the time, it was stuck to his face, and I thought, I’ve got to get some help.  

Georgina talks about an incident with her son in a public swimming pool.

And then a few months later, he started to go swimming. We were over the moon, because he’d, he’d always loved swimming before he, he got ill. And came home one day, and said, “One of the lifeguards called me out of the pool today.” And I said, “Whatever for?” And he said, “I don’t really know Mum. He asked me why I came swimming so often.” And alarm bells rang for me, and the next time [son’s name] went swimming, which was a few days later, two uniformed officers called him out the pool, and asked him why he are you there while there’s children in there? I was horrified. My husband came and picked me up from work. We went to see the leisure pool manager, and then we were more horrified, he told me, “It wasn’t me who called the police, it was a head teacher of a local school.” So we went to see the head teacher of the local school, and I asked her, “What promoted you to bring the police on my son?” And her answer was, “I’m here to protect children.” And I said, “From what?” And she said, “I’m here to protect children.” And so I said, “What was my son doing?” And she said, “He sort of stands at the side of the pool for ten minutes.” And I said, “Well now, I’ll explain to you what I think happened. I think you not… or someone noticed that my son stands at the side of the pool when there’s children in there. So he was then… that got back to the leisure pool manager, who told the life guard, ‘Go and interview’ you know, go and question him … And my son being honest said, ‘I’ve had a mental illness. I’m trying to build up my muscles.” Those were his very words. But all hell broke loose. I said, “But had my son been sitting in a wheelchair staring at those kids you’d have done nothing. This is public ignorance.” I said, “Yours, the police’s and the leisure pool manager’s.” And my son was then on Prozac for almost a year, because he was so severely depressed. And when I say to him, “[son’s name] do you want to go swimming?” He’d say, “No. I feel ashamed”. But he bore their shame as far as I’m concerned. Or not even their shame. The shame that we don’t do enough to educate the public. I think it’s absolutely disgraceful. There should definitely be training in schools. 

Georgina was upset when one of her son's social workers made her feel she was upset about...

And can you describe to me the kind of relationships have you had with [son’s] social workers?

 

[Son’s] some of them have been absolutely excellent. And some of them have been absolutely dire.

 

There was one in particular who I rang up crying, and she said, “Oh I didn’t know you wanted tea and sympathy.” And I said, “Actually, that’s exactly what I do need, tea and sympathy.” And she was one that made me feel that made me feel as if I was just dealing with something very, very trivial and not a severe and enduring mental illness. And I can remember thinking, you know, if only you could come and live in my house for a few weeks, and cope with what we have to cope with, you would not adopt that same attitude. The best practitioners are ones that treat the whole family. Involve the whole family, and don’t you know, see it as I’m on my high horse, I’m the professional and you’re just a low down carer. That’s not what it’s all about.

 

Georgina initially found it difficult to contact other carers.

And how did you get this information when you went through it the first time?

 

 

I would say I’ve got a lot of information from other carers, because we all support, we support each other. You know, I help other carers, and other carers have helped me. And, and services. I mean I’ve had help from services. And I think it is getting better. It’s a lot better now than it was when [son’s name] first became ill.

 

What was there then?

 

Not a lot. No. I felt very, very isolated. And where do I go for help? But it is easier now.

 

And where did you meet these other carers who’ve been supportive?

 

At conferences, at carers groups, where did I meet them all? Mainly, mainly at conferences I’ve met carers. You know, that live all over the country really.

 

And why did you start …?

 

And I belong to carers forum on the internet as well.

 

oh right.

 

So.

 

Can you tell me a little bit about that?

 

Well we all, we all interact with each other, and try and help each other with whatever problem it is that’s arising. You know, what worries me more than anything is when I say to, I did a talk for a carers groups in Maidstone, a couple of years ago and direct Payments I think have been out for about twelve years now. And I said, “Who knows about direct payments?” And there was two carers out of 47. Now that’s terrifying that there is help out there, but carers don’t even know about it. And a lot of practitioners don’t know about direct payments. I think it’s the way forward. Individual budgets, direct payments. Giving people choice and control over their own lives