Reporter: Vivian White

RECORDED FROM TRANSMISSION: BBC ONE
DATE: 03:12:07

CHERYL: I never thought he was the same again after he'd been prescribed those drugs. I never... I thought something was lost.

VINE: And she may well be right. Tonight we reveal the results of important new research which shows that the powerful drugs given to many patients are useless or worse.

Prof CLIVE BALLARD: Long-term treatment with antipsychotics doesn't give them any benefits, and it does cause to them an acceleration of their disease and it does substantially increase the risk of them dying.

VINE: Behind every patient with an incurable disease like Alzheimer's there is a human story and this one is rather remarkable. It involves a man trapped not just by a degenerative disease, but also by the drugs given to him by doctors, and a woman, his daughter, so desperate to reveal his plight that she adopted some pretty unusual tactics. Vivian White reports.

VIVIAN WHITE: Eric Hollingworth couldn't help himself and his daughter had tried everything, letters, phone calls, meetings.

CHERYL: I was angry because we'd failed him. He'd been let down when he needed help.

Reconstruction

WHITE: So one day last year Cheryl Byrne set off from her home near Todmorden, a small town in West Yorkshire, to do a spot of shopping.

Reconstruction

CHERYL: We found some details on the internet of a spy shop in Leeds and we drove over, had a look at what was available. I could never ever have imagined that it would come to this.

SHOP ASSISTANT: The recording equipment is inside the screen. The camera is there.

WHITE: And what she bought was a miniature camera with a tiny lens to fit inside a Marks and Spencer's handbag, so that she could spy on... no, not nuclear secrets, but an elderly man in a care home.

Secret filming
There, Eric Hollingworth. She'd spent three years battling to stop her father being given powerful antipsychotic drugs she said he didn't need. Finally she resorted to filming the evidence, his drugged state. One hundred thousand dementia patients are currently prescribed these drugs in the UK.

Eric Hollingworth's journey from being the person he once was to someone with dementia has been frightening for everyone involved. These are the moors that he knew well. He'd been a senior engineer in the textile industry.

CHERYL: A gentle sort of person really. Very organised because he was an engineer and very methodical. He was meticulous in everything he did really.

WHITE: And this is all the jet-setting life of a textile engineer.

CHERYL: It was in those days. (laugh)

WHITE: Stamps from all over the place.

CHERYL: Yes.

WHITE: But then the behaviour of this organised man started to change.

CHERYL: We were looking at some family photographs and he couldn't recognise his own father and that was a shock and we all sort of looked at each other.

WHITE: He was 77 when he was diagnosed with Alzheimer's, the most common form of dementia. And following this news he became more and more upset.

CHERYL BYRNE
He actually said that he would slit his throat.

WHITE: Why?

CHERYL: Because he couldn't cope and so I drove straight over and once I was there he was fine. It was reassurance he needed.

WHITE: He was distressed beyond measure because this competent man felt he was no longer competent.

CHERYL: Yes, I think he was very, very afraid of what was happening to him.

WHITE: The GP came and prescribed him a drug called Olanzapine, it was an antipsychotic. These are powerful drugs known to have significant side effects. They were originally designed and licensed for the treatment of people with schizophrenia and bipolar disorder, but then doctors began to prescribe them to people with dementia to deal with their behaviour problems because of the very strong sedative properties of these drugs.

CHERYL: I can't recall ever receiving an explanation as to what he was being prescribed or why.

WHITE: In February 2004 Eric and his daughter agreed that the best thing would be for him to move to a care home, Waterside Lodge, just a few minutes down the road from where she lived. It's had consistently good inspection reports over the years. Soon after he got there Eric was prescribed another antipsychotic, Risperidone.

CHERYL: I've been told by the deputy care home manager that this was a non-addictive drug and that it was just to help him settle. I felt I could trust them implicitly because I felt they were the experts.

WHITE: But Cheryl's faith in them didn't last. Her father often became confused, a symptom of his dementia, but he was judged early on to be more than confused, to be having hallucinations and they're a symptom of psychosis and a possible justification for giving antipsychotic drugs.

CHERYL: He complained about a light flashing into his room. It was disturbing his sleep, and I was told that this wasn't the case and he must be hallucinating, and so I assumed that was correct.

WHITE: Until much later a light switched on for Cheryl.

CHERYL: I was in his room with the light off and the light did flash in through the curtains, yes.

WHITE: Because Eric's room overlooked this pedestrian crossing.

So he wasn't making it up.

CHERYL: No.

WHITE: And they'd said he was.

CHERYL: Yes.

WHITE: Eric hadn't been hallucinating, he simply hadn't been believed. After a long gap he was prescribed another antipsychotic called Quetiapine, and Cheryl started to find out more about these drugs and their side effects.

What did you see change in your father's condition?

CHERYL: I think he became more confused, he became more disorientated. You can only put it down to the drugs because it was so quick.

WHITE: Was Cheryl right? Was Eric unnecessarily prescribed antipsychotics, drugs which harmed him? I went to consult two referees, senior medical professionals. We didn't give them the identities of those involved but we gave them all the available information about the case.

PETER BOWIE: These drugs appear to be doing more harm than good.

WHITE: Peter Bowie, a senior specialist in old age psychiatry.

TIM KENDAL: In General there's an over dependence on medication but a key part of that all the way through is the use of antipsychotics.

WHITE: Tim Kendal was commissioned to write the national guidelines for prescribing antipsychotics to people with dementia. Published last year they say they should only be used for limited times and after exhausting alternatives and only with severe cases. I asked about the first prescription to Eric after he'd threatened suicide.

And from the beginning he's prescribed an antipsychotic at the outset.

TIM: At the outset, yes. There doesn't seem to be a justifiable reason for doing so.

PETER BOWIE: We should be considering the possibility is the man depressed or is this simply a reaction to receiving a diagnosis of Alzheimer's disease.

WHITE: And next there was the description of antipsychotics after he arrived at the care home.

BOWIE: No clear reason why he should be on the antipsychotic at all.

TIM KENDAL: I think we can say that the use of antipsychotics was too much too soon.

WHITE: Eric had been known in his family for being very mild mannered. But his medical notes from now on include occasional references to his being aggressive. That might suggest he needed sedation. I talked to a young woman who used to work in Waterside Lodge part-time as a carer whilst still at school. She witnessed Eric getting angry.

Reconstruction

Actor's voice
I know that he didn't like showers and every time he tried he started getting angry which you could understand. I saw once when someone was trying to get him in the shower and he was shouting saying that he didn't want one, but they were pushing him towards the shower room.

WHITE: Waterside Lodge say all their staff receive dementia training, that the level and content of all such training is a national issue.

Dr TIM KENDAL
Deputy Director. Research
Royal College of Psychiatrists
The fact that we haven't got enough training for people who are caring for people with dementia has led to us being far too reliant on medical solutions to behavioural problems.

Reconstruction

WHITE: The prescription of antipsychotics was reduced and stopped for nearly four months but then restarted. Earlier Eric had reported seeing flashing lights and people said he was imagining it. but one day Eric did something very odd, he took over the lift for a time and pushed other people out of the way. Did this justify the use of antipsychotics?

Dr PETER BOWIE
Clinical Director, Sheffield Care Trust
The incident in the lift seemed very much an incident related to confused behaviour.

WHITE: But this incident in Waterside Lodge was to become very significant later on. Cheryl and the home were now at odds. In January 2005 Eric was moved as a temporary measure to Dove Court, but the change greatly disturbed him. So he was taken to hospital instead. Cheryl thought that now he'd be taken off antipsychotics.

CHERYL: I assumed that the expert care would then be in a hospital placement, that they would be able to strip the drugs down and start again really, yeah.

WHITE: You were in for an enormous shock in that case.

CHERYL: I was.

Reconstruction

WHITE: She'd asked to help with the transfer to hospital but he was moved without her being told and placed in a ward with a door that locked. Eric barricaded himself in. He was sectioned under the Mental Health Act.

TIM KENDAL: It was consistent with how he's reacted before when he finds himself moved from one place to another and a new environment, he doesn't like it.

PETER BOWIE: Coming to effectively a locked environment, yes, I think you can understand his reaction.

VIVIAN WHITE
The move to Rossendale Hospital had been traumatic and his reaction desperate. Now he was given a long list of drugs including antipsychotics. More drugs - all at the same time - than he'd ever been prescribed before. Eric's consultant prescribed five drugs altogether, including two tranquilisers, an antipsychotic, an antidepressant, and then a sixth, a mood stabiliser a few days later.

TIM KENDAL: I was horrified when I saw the list. I can't find a better word than horrified. I can't see the justification for this wide range of drugs. There aren't many more that you could have introduced. But to do so all at once as a cocktail, I just... I cannot see the justification. I can see that it's potentially very risky to someone of this age who is not only likely to become more confused, but what about the side effects?

PETER BOWIE: This is a man with brain disease, he's got Alzheimer's disease, and yet we're giving him six different drugs that act on the brain! The potential for an adverse event must be very high indeed.

KENDAL: It's a liquid cosh.

WHITE: And the notes record what happened to Eric after five of these drugs had been administered.

CHERYL: He was 'staggering' I think the word in the notes is 'staggering' around and he pulled the curtain rail down.

WHITE: What do you think about that?

CHERYL: I think it's horrendous. Horrendous. Awful. This is an old man with dementia. I'm sorry. (emotional)

WHITE: He's an old man with dementia.

CHERYL: Yeah.

WHITE: Whom you hoped would be taken off the drugs, who's been given more drugs..

CHERYL: Yes.

WHITE: He's pulled the curtain down, staggering around the place...

CHERYL: And I didn't know. I didn't know this was going on.

WHITE: Lancashire Care NHS Trust maintain that the six drugs were given to manage challenging behaviour and only as an emergency measure. Three days later Eric was moved again to Ward 19 in Burnley General Hospital. His son took these pictures of him. Eric stayed in Burnley General for nearly two years and he was prescribed antipsychotics for most of this time, but he could be difficult to look after. He was aggressive to staff on a number of occasions.

He's described as being aggressive and having kicked out during an intervention on the 27th July. Was your father becoming aggressive, did you see that?

CHERYL: He did on two occasions he did thump me on the ward. On both times I was trying to get him to do something and I... he just backed away.

WHITE: Our experts said that faced with challenging behaviour from people with dementia staff should ask one question first.

TIM KENDAL: What's making them upset and disturbed? Is it because they're constipated? Is it because they've been moved from one environment to another? All of these things need to be addressed.

WHITE: One reason why Eric was often resistive to nursing care is clear from the notes. He had a skin condition.

CHERYL: Much of the time he was on Ward 19 he was supposed to be creamed four times a day from head to foot, that's an ordeal for anybody I would suggest, but for somebody with dementia it must be quite difficult.

WHITE: And Eric's physical state was now beginning to change in all sorts of disturbing ways. These shots were taken by a family friend. On the 21st July there's a reference to Eric having been 'dystonic'.

TIM KENDAL: Dystonic just simply means that you've got altered tone in your muscles. Muscles become quite difficult to move, typically a side effect of antipsychotic medication.

WHITE: On the 24th July the notes referred to psychomotor agitation.

KENDAL: Antipsychotics can in certain individuals produce a sort of agitation but it's really an inner restlessness which makes them move around constantly.

WHITE: And then EPSE.

KENDAL: Extra pyramidal side effects, they're effects which you would expect if somebody had Parkinson's disease, they often get a sort of shuffling gait and they're bent over like this...

PETER BOWIE: And this is one of the more common side effects of antipsychotics.

WHITE: Remember, Eric is far from unique. We're not telling his story because it's exceptional but because it's so ordinary. But that didn't make it any easier for Cheryl to change it's outcome.

[Filming of Eric in day room]

STAFF: I'm afraid I'm going to have to ask you to switch off.

CAMERA: I just want to get a close up.

STAFF: No, I want you to switch it off now.

WHITE: Two years on and Eric had been in two care homes and two hospitals. In November 2006 he was moved again from Burnley General into Crawshaw Hall, a home recommended by his consultant. But Cheryl only learnt that the move had happened afterwards, and apparently the new home weren't put fully in the picture either.

CHERYL: They didn't appear to know about us, they didn't appear to have next of kin details. They seemed perplexed that my father had interested relatives.

Secret filming

WHITE: And the next month Cheryl began her secret filming of her father in Crawshaw Hall. Her brother helped her.

HOLLINGWORTH JNR: Can you hear me dad? Can you hear me? You're dozy, aren't you. He's asleep, isn't he.

WHITE: Why did you resort to filming him?

Secret filming

CHERYL: My father didn't have a voice and neither did we. He couldn't speak for himself and nobody was listening to us. What I needed to show was what was happening to him, the effects of the drugs on him. They show him mainly slumped in a chair with his head down, almost like a zombie. They show him scratching quite often in a corridor.

WHITE: He was still being prescribed antipsychotics though the dose had been reduced.

CHERYL: They show him getting up and down, agitated.

WHITE: Cheryl's description and the filmed evidence, do they ring any bells now?

Secret filming

TIM KENDAL: Antipsychotics can, in certain individuals produce a sort of agitation.

WHITE: There's film of him getting up and down like this 17 times in ten minutes.

TIM KENDAL: It's really an inner restlessness which makes them move around constantly, sometimes repetitively doing the same thing again and again walking round in a circle, standing up, sitting down, whatever.

WHITE: And Cheryl's camera hidden in her handbag has recorded what appear to be precisely these side effects of the drugs he'd taken. Cheryl then filmed a meeting where she challenged the consultant treating him at the time.

CONSULTANT: [watching video] That's your brother, here?

CHERYL: Yes.

CONSULTANT: He knows he's being filmed.

CHERYL: Yes.

CONSULTANT: And here's where the meeting is going to take place.

CHERYL: We specifically asked about the use of the antipsychotics and the reasons they were being used, and she gave examples of "bizarre behaviour" that's the term she used. When we asked what she meant by bizarre behaviours, one of the instances she gave was going up and down in the lift at Waterside Lodge.

Reconstruction

WHITE: Remember that? The incident in the lift earlier on when Eric took it over for some time and pushed other people out of the way.

PETER BOWIE: The incident in the lift seemed very much an incident related to confused behaviour.

WHITE: But the consultant, who hadn't been treating Eric then, didn't see this as merely confused behaviour.

CHERYL: She actually referred to the going up and down in the lift as psychotic behaviour.

WHITE: Psychotic behaviour?

CHERYL: Yes.

WHITE: And the minutes of that meeting conform that the consultant did say "psychotic".

Is he psychotic as far as you can see on any of the evidence you have here?

TIM KENDAL: From when he was first given antipsychotics I have not currently been able to find anything which suggests that he was psychotic. As far as I've read this, these are being used for a different use which is behavioural control. It's not for a psychosis, and as far as I can tell, there's no evidence of hallucinations or delusions which are the hallmarks of psychosis.

WHITE: In March this year Cheryl Byrne insisted that her father be moved to a home she had chosen with its own dementia unit - Ghyll Royd.

CHERYL: We were very lucky that a placement became available. We're much happier with the care.

WHITE: And Cheryl put her secret camera away, though she went on recording her father with an ordinary camcorder. But another consultant continued to prescribe Eric antipsychotics.

KENDAL: I think it's the inevitable momentum. Once people are prescribed these things often others are reticent to withdraw them.

WHITE: But in fact, people who've been on antipsychotics for a long time can be taken off them quite safely. Professor Clive Ballard did so. He's a psychiatrist and a clinical researcher who specialises in dementia.

PROFESSOR CLIVE BALLARD: (chatting to patient) Where are you from, Maria?

WHITE: Professor Ballard has just completed a major research project into the long-term effects of antipsychotics. He studied a group of 165 people with dementia who'd already been on them for some time. He took half of them off the drugs and gave them a placebo instead, and he compared the two groups after a year. Did the drugs do any good? The answer was clear.

Professor CLIVE BALLARD
King's College, London
There were no benefits in behaviour and there were clearly deteriorations in some of the core symptoms of the disease such as in their ability to think, particularly in their ability to communicate effectively. People lost their ability to communicate more rapidly if they were taking the antipsychotics.

WHITE: So these powerful drugs were accelerating the very symptoms of the dementia itself, and the study concluded that as well as lowering the quality of life of those who took them, the drugs ended their lives sooner. The research team followed up the two groups, and two years on....

BALLARD: People who weren't taking the antipsychotic drugs had a 62% chance of being alive whereas the people who were taking the drugs only had a 36% chance of still being alive.

WHITE: And his conclusion?

BALLARD: For the vast majority of people there are no benefits and considerable harm from using these drugs.

WHITE: But is there any alternative? After all, people with dementia can be very difficult to care for. We were given access to a home called Spring Mount. It takes 24 residents with dementia. The youngest is 53. Walter is one of the oldest, he's 89. Walter has recently arrived at Spring Mount. He first came to Britain in 1945 as a German prisoner of war.

Walter is sometimes using a German word, Walter was saying "now". He seems as if he could be no trouble to anybody. But he has been, quite a bit in fact.

JACKIE SMITH: He's come from a residential home who couldn't manage his behaviour.

WHITE: How was Walter behaving in the home where he was before? What was he doing?

SMITH: He was being physically aggressive.

WHITE: He was physically aggressive.

SMITH: Yeah.

WHITE: Hitting people, kicking people.

SMITH: Hitting out at people.

WHITE: And does that happen here too?

SMITH: It hasn't done. He does get frustrated but he tends to come in here and he spends a lot of time in the doorways going outside.

WHITE: And Walter is not the only resident who has come here with a history of difficult challenging behaviour.

JACKIE SMITH
Owner and Manager, Spring Mount
We take residents that a lot of other places don't manage. I think that we probably see problems in a different way to many homes.

WHITE: In his previous home Walter was treated with antipsychotics. He was on them for most of the last 3 years. Many of this home's other residents used to be on them too, but here they're weaned off antipsychotics. The home has been going for 20 years.

JANET BELL
Owner and Manager, Spring Mount
Everybody is free of antipsychotic medication, the reason being is that we need access to all of the intellect that they have left.

WHITE: Spring Mount is unusual and they charge higher fees than a typical care home, and they say they have a higher staffing ratio than some others.

JANET: [Comforting distressed patient] You remember all about being a nurse.

PATIENT: Yes, I do, I bloody do.

WHITE: But they think the key is the dementia training that they give all their staff, and their message is simple.

JANET: It is a myth that people with dementia lose their personality. Every single resident we have here is different, they've all maintained their personality. They all react to the same triggers, in the same way as they've done in their previous lives to coming here.

WHITE: When Cheryl Byrne first became concerned about antipsychotic drugs social services told her there was a place not too far away which didn't use them. But at the time Spring Mount didn't have any room for Eric. Eric is 81, eight years younger than Walter. The danger these drugs pose is now clear, but it may still be difficult to break the prescribing habit. It's estimated that 40% of people with dementia in care homes are given them. Doctors will need to be convinced that alternative forms of care are available.

PETER BOWIE: In virtually all old age psychiatrists in the country would have prescribed antipsychotics to people with dementia and probably are still doing so. I think they're handicapped by a perceived lack of other options.

TIM KENDAL: They are amazingly damaging drugs in lots and lots of ways with a big range of side effects and some of which have a permanent effect on people's brains, it's time we seriously reviewed the way we're using them.

WHITE: Because what happened to Eric Hollingworth, the change in him that his daughter saw may be shocking but it's not at all unusual.

CHERYL: His dementia was bad enough but with the side effects of the drugs, that's been made worse. I think they've robbed him really, physically and mentally of what capacity he did have.

Following a chest infection, Eric Hollingworth died on Thursday 29th November. Aged 81

JEREMY VINE: The story of Eric Hollingworth who passed away last week. What next? Well the Alzheimer's Society says the cost of prescribing those drugs, 80 million pounds a year, should be switched to better training and care. If you need any advice in this area there will be a number on the screen in a moment and meanwhile you can put questions to two doctors, including Clive Ballard, via the Panorama website.

Next week, the truth about the British Army's withdrawal from Basra, and the deal we stuck to end the body count.