The Independent London Newspaper

 

Harry Horne-Roberts' parents welcome probe by police into autistic son’s death while in care home

Keith and Jennifer Horne-Roberts

Inquiry focus on anti-psychotic drugs which family believe he should never have been given

Published: 16 April 2010
by RÓISÍN GADELRAB

THE devastated parents of an autistic man who died of heart failure while in a care home have welcomed a coroner’s decision to order a police inquiry into his case.

The Tribune reported in February how Keith and Jennifer Horne-Roberts, from Archway, were calling for an investigation into the death of their 20-year-old son Harry, which they believe was a result of anti-psychotic drugs he should never have been prescribed.

They say that the talented artist, who died in December, was never tested for his suitability to be given the drug. Although he did not have the capacity to approve his medication, his parents claim they were never informed that he had been prescribed chlorpromazine (CPZ).

An independent report conducted on behalf of Barnet, Enfield and Haringey Mental Health Trust, published last week, supports some of their claims. 

Mrs Horne-Roberts passed the report, including her own witness statement, to north London coroner Andrew Walker last week. 

On Monday, Mr Walker told Harry’s parents he has referred the case to Tottenham CID. The trust maintains there’s no proof that CPZ contributed to Harry’s death.

Mrs Horne-Roberts, a barrister, said: “He was put on these dangerous drugs. The report said Harry should have been tested and he wasn’t. Harry didn’t have the capacity to consent and so we should have been consulted.”

She added: “These drugs cause heart failure and sudden death and that’s what happened to Harry. We’re absolutely horrified about what’s happened. 

“We understand his condition. It was anxiety but doctors treated it as psychosis. Harry was overweight, he was 20 stone. It was particularly dangerous to give a drug that could cause heart failure. It’s a chemical cosh. We want justice for Harry but also to ensure other autistic people aren’t treated like this.”

She said that under the Mental Capacity Act of 2005 guardians should be informed of treatment where a person did not have the capacity to consent. 

Mr Horne-Roberts said his son had built up a collection of art, adding: The tragedy is that there won’t be any more. They are quite an opus.” His wife added: “He was such a lovable, talented boy, very sweet-natured. He was a brilliant boy who had been so terribly injured. It was a devastating loss for us. It will never get any better.”

His parents say Harry developed autism after having a bad reaction to an MMR jab at the age of one.

A former pupil at The Bridge School in Holloway, he lived with his parents in Cheverton Road until he was 18, when he moved to supported accommodation at Hillgreen Care Home in Tottenham. 

It was while he was staying there that he was prescribed CPZ.

Mrs Horne-Roberts said: “He was very difficult to bring up. When he was 18 we couldn’t really keep him safe. We thought if he went into supported accommodation – where they had a 10-strong team – they would keep him safe. 

“We were preparing him for the future, for one day when we may not be here. We would take him out four or five times a week. He was rather a compulsive eater because he knew he was autistic. He would ask us: ‘What’s wrong with Harry’s brain?’ 

“We’re shattered but sometimes you have to carry on. We’ve a daughter who’s 19. We have to put on a brave face.”

The independent report, conducted by Professor Iqbal Singh, said the prescribing of anti-psychotic drugs for challenging behaviour was “fairly regular” among psychiatrists but was based on “empirical grounds”.

He said it was not clear why Harry was prescribed CPZ but that it was “effective”.

But, he added, although monitoring before being prescribed such medication is recommended: “There is no documented evidence of any monitoring of physical health in the notes provided.”

Prof Singh concluded: “From the documents provided, I am not sure if Harry Horne-Roberts had the capacity to consent to the medication. However, it appears unlikely.”

Although a coroner initially concluded Harry’s death was due to natural causes, the latest development means a further inquest will have to be held once the police investigation has been concluded.

Steven Thomas, for Barnet, Enfield and Haringey Mental Health NHS Trust, said: “We are aware that the death of Harry Horne-Roberts has been referred to the Metropolitan Police and will co-operate fully with their investigations.

“We have conducted an internal investigation, and will act on any issues which this identifies. We can find no evidence that chlorpromazine contributed in any way to Harry’s death.”

A spokeswoman for Haringey police said: “I can confirm the case has been referred to the police and we’re trying to establish the facts.”

• Harry’s paintings will be among works shown at an exhibition held by the Hoffman Trust for Autism at Hornsey Library from July 15.

 

Comments

When will evaluation inform decison-making in prescribing?

Despite the sad termination of Harry's young life and the inconsolable grief his parents must still be undergoing and despite the heroic efforts they are making about the use of anti-psychotics with people experiencing autism, nobody with the power to make a difference appears to be treating this issue with the seriousness which it warrants. What was the reason for giving the drug? What was its administration expected to achieve or remedy? What benefit did Harry appear to be receiving from its use with him? How often must it be said that "Autistic people cannot metabolise toxins efficiently and display side effects not seen in others" before this information is given the attention it warrants from professionals and those caring for people with autism? People who have autism often have very limited ability to communicate verbally and rarely have the ability to share information about their response to drug administration. This makes it particularly important for the parents and carers of those with autism to not only be informed that the person with autism is being considered for treatment with anti-psychotics but to be sufficiently empowered and informed about potential side effects so as to give their "informed consent" to such treatment. It is not enough to simply tell guardians that the autistic person is going to be prescribed anti-psychotics. Response to treatment with anti-psychotics needs to be much more seriously monitored, recorded and evaluated for outcome than happens at present.

Harry Horne Roberts

The Tribune reported in February how Keith and Jennifer Horne-Roberts, from Archway, were calling for an investigation into the death of their 20-year-old autistic son Harry, which they believe was a result of anti-psychotic drugs he should never have been prescribed.
Mr and Mrs Horne-Roberts were instrumental in establishing a charity called Trust for Autism (‘TITA’) which helps autistic people, supports Day Centres for them and shares information with those working with autistic people.
In Harry's memory I will be running the Crouch end 10k this weekend to raise monet for TITA. If readers would like to contribute to the charity, they can contact direct via the website www.trust-for-autism.org.uk
Yours sincerely
Greg Foxsmith

A Life

So heart failure is a known side effect to these anti-psychotic drugs...and Harry was 20 stone...and the coroner concluded that his death "was due to natural causes" - ???

This wouldn't be a particularly telling example of trying to sweep an inconvenient truth under the carpet, would it? And just get on with our lives, as if nothing really happened here, just keep moving, folks??

Good on Harry's parents for blowing a whistle, and slowing things down a bit. This story deserves to be told. Thank you, islington Tribune, for giving it some legs.

Harry Horne Roberts

How dare Professor Iqbal Singh justify the killing of an Autistic Adult with medication and to use words of "effective" when reffering to the use of CPZ is disgustingly insensetive.

Harry will never be forgotten ..good luck Jen and Harry

Angus

Death through ignorance

My heart goes out to Jenny and Keith Horne-Roberts. To have lost their son in this way while he was under someone else's care must be heart breaking. Even though Harry was over 18, the introduction of antipsychotic drugs should have been thoroughly discussed with his parents - even out of courtesy if nothing else. All concerned will have been fully aware that Harry would not be able to make such a decision himself.

Unfortunately there exists a terrible ignorance in psychiatry and the medical profession as a whole, about how autistic people can react to psychiatric drugs. Autistic people cannot metabolise toxins efficiently and display side effects not seen in others. The education of doctors, psychiatrists and carers in this issue is of paramount importance. How many others have quietly lost their lives in this fashion because of this ignorance? And how many more must follow Harry before something is done? It's a scandal.

Love and good wishes to Keith and Jenny in their quest for justice and recognition of the crime committed against their son.

Janette Robb [Scotland]

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