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By Amy Oliver
PUBLISHED: 14:06 EST, 16 February 2013 | UPDATED: 09:25 EST, 17 February 2013
Les Halpin has one of Britain’s sharpest brains. A statistics wizard who brokered multi-million pound deals for Barclays and Lloyds banks before becoming a successful hedge fund manager and entrepreneur, he has always enjoyed living life to the full.
His idea of an afternoon well spent might be flying a helicopter around the Gloucestershire countryside or zooming around the lanes in a Ferrari California. He loved walking with his wife Claire and playing badminton ‘badly’. The pair, who married after meeting at university, skied, enjoyed exotic holidays together and loved eating out.
But in May 2011, at the age of just 53, Les was diagnosed with Motor Neurone Disease. The prognosis is grim. The disease attacks the nerves in the brain and spinal cord leaving sufferers unable to walk, talk or feed themselves.
Change: Since being diagnosed with Motor Neurone disease Les Halpin, 55, has gone from being fit and active to being confined to his bed at the home he shares with wife Claire
It is inevitably fatal. In less than two years, Les has gone from being fit and active to being confined to his bed at the couple’s four-bedroom converted barn near Tetbury, Gloucestershire. He is fed through a tube and breathes with the help of a respirator.
But his mind is as clear and focused today as it ever was. Les is only too aware that MND has no known cure, his tireless research has revealed that no new drug to treat the disease has come onto the market in more than 20 years - and that precious little research is being done to find one.
It is a sorry state of affairs that Les, now 55, is determined to change, even if the fruit of his endeavour comes too late to save his life. Remarkably, he has created and funded a new campaign group Empower: Access to Medicine, which is campaigning to relax the strict rules on drugs testing so he, and other terminally ill patients, can waive their right to sue pharmaceutical companies in return for trying experimental drugs before they come to market.
In essence, he wants terminally ill patients to have the option of becoming guinea pigs for untested drugs. The drawbacks, he says, can scarcely be worse than doing nothing while the disease takes its inevitable course. The potential benefit could be a cure that could help millions - and save his life.
Currently, getting a new drug onto the shelves can take up to 15 years and cost more than £1billion. The prohibitive cost causes pharmaceutical companies to make difficult commercial decisions - dropping drug trials on cost grounds or if they fail at the first stage of testing. Just one drug in 5,000 gets through the five painfully long stages, including three clinical trials, necessary to gain approval for release.
‘The pharmaceutical industry is a business and I totally support that,’ says Les. ‘But the Government’s excessive rules sometimes makes it not worthwhile for the drugs companies to fund research.
‘Patients like me would be very happy to be used as guinea pigs, with strict rules in place. I’m going to die anyway so why not? We need a much more thoughtful approach to drug testing to help society progress. No one wants another Thalidomide case, but now we’ve gone to the other extreme and that’s not good either.
Defying doctors: People with Motor Neurone Disease live an average of two to five years, but some, such as Professor Stephen Hawking, 71, live far longer
‘I am not currently undergoing any
unlicensed treatment, but it is likely there are some promising drugs at
one stage or another of the testing process. It’s also possible there
are drugs licensed for other neurological conditions that might help.
'Neither are offered to MND patients at present and it is difficult for the patient to do find out about them because the drug companies aren’t currently obliged to publish test results. It is for this reason we welcome GlaxoSmithKline’s recent decision to publish all trial data.
‘If the drugs are licensed, it might be possible under current regulations to get hold of them it if your doctor agrees, but I would neither break the law nor would I do something without my doctor’s approval. In the campaign we are very clear about this in order to prevent what might be described as “drug anarchy”.'
People with MND
live an average of two to five years after diagnosis. But some have
defied doctors to live for years - the most famous being Professor
Stephen Hawking, who was diagnosed with MND in his early twenties.
The physicist celebrated his 71st birthday last month. He is often seen at the theatre and is currently starring in a Go Compare television, which sees infuriating tenor Gio Compario being sucked into a black hole of Hawking’s making.
‘I think that advert is great because it shows that whatever state you’re in, you can still laugh,’ Les says with a chuckle. I have always had a very dark sense of humour. It’s absolutely necessary, especially as this illness progresses.’
Sadly Les has deteriorated very quickly. Up until August last year he was in a wheelchair. Now, he can only move the muscles in his face, is totally bed bound and breathes with the help of a ventilator. His speech is slurred and nasal.
Once a keen foodie, he is now fed six times a day through a tube permanently embedded in his stomach and has to have someone – usually Claire – with him 24 hours a day, seven days a week.
‘I had been active all my life, playing all sorts of sports,’ he tells me. ‘I hardly ever had a day off work through illness, and had never been to hospital as an in-patient since I had my tonsils out when I was seven, so being diagnosed with MND was a body blow.’
Les was diagnosed with MND in May 2011, less than a year after he showed the first symptoms. ‘He started falling over while playing badminton the September before,’ Claire recalls. ‘But then, he also remembered not being able to climb into a Jeep we had rented during a trip to India in 2008.
‘You just think it’s old age, but when we went out for walks, he’d trip over silly things. It was the muscles in his legs and feet not working so well.’
Les had watched his uncle and a close friend die from MND, so was aware of the symptoms. After researching the condition further on the internet, he explained his concerns to his doctor in January 2011. There is no definitive test for the disease; diagnosis tends to come after everything else has been eliminated. As such, it took four months before Les was diagnosed.
‘He was semi-prepared for the answer, ’ Claire says. ‘But having MND confirmed was pretty devastating and Les was a bit tearful about it afterwards. We went to the nearest restaurant and drank a bottle of wine. Doctors talk about a four-year life expectancy, so you don’t think it will start affecting you straight away. But it did with us.’
One of the first things the couple did was book a week’s holiday in Switzerland. They had been skiing there, but Claire had always wanted to go walking in the mountains. ‘Les said let’s go while I can still walk, but by the time we got there he couldn’t walk on uneven terrain. That really brought it home to us. By the end of that first year, he was in a wheelchair.’
Now his life is even more restricted. He usually wakes up at 8.30am. Claire or a carer will feed and wash him before he watches breakfast television. Les will then answer emails and queries about the campaign and his business, Lightfoot Solutions, of which he is still the chair.
Guinea pigs: Mr Halpin wants terminally ill patients to be able to waive their right to sue pharmaceutical companies in return for trying experimental drugs (file picture)
Les has recently started using ‘Eyegaze’, a software programme that allows him to write his own emails. ‘He’s pretty quick now,’ says Claire. ‘He can write a sentence in half a minute.’
The couple spend the evening watching television before getting ready for bed around 9pm. Claire sleeps in a single bed next to Les. ‘I’m there just in case something happens in the night,’ she says. ‘Sometimes it can be as simple as scratching an itch.’ Claire, a former software engineer, gave up her career in 2007 to concentrate on her passion - volunteering with the local wildlife trust. She has now given that up to care for Les full time.
‘Mostly I sit with him and very rarely leave him for more than five minutes at a time. It is very hard, but we’re fortunate to have carers here every day. We could pay for someone to come in full time, but we haven’t got a lot of time left together. I want to be with him and help him.’
Before Les was diagnosed, they had many shared interests. Though, as a dedicated conservationist, Claire wasn’t so keen on her husband’s passion for gas-guzzling toys. ‘My favourite car was a Land Rover Discovery,’ he says, eyes lighting up. I bought it after watching Jeremy Clarkson drive one up a Scottish Mountain and thought this is the car for me. Which didn’t go down too well with Claire. ‘
Claire adds: ‘He once offered to take me to a conservation event in Norfolk in his helicopter. Everybody else was planning to share cars or take the train.’
But Claire, who met Les in 1976 at Exeter University, says that Les finds it easier to cope with disease because he can still use his brain.
‘I’d have given up long ago if I had been diagnosed with MND because I’m much more of an outdoorsy person than a cerebral person,’ Claire says. ‘But having things to exercise his brain definitely keeps Les going.’
Les agrees: ‘My schooling and background has enabled me to do what I’ve always done, despite the illness. If I had been a builder or a bus driver I don’t know what I’d be doing now.’
The couple have been keen philanthropists for many years - they have donated more than £1million to fund a scholarship at their old university. But now their focus is Les’s campaign, which is already attracting influential supporters, including former president of the Academy of Medical Sciences, Sir Peter Lachmann and his local MP, Geoffrey Clifton-Brown, who said there had already been a debate in Westminster on the issue and that Ministers had been alerted.
‘There is a long way to go, but this campaign could help to bring effective drugs to the market more quickly,’ he added. ‘The ultimate aim must be to have treatable diseases not terminal diseases.’
Maurice Saatchi brought the issue of drugs research to light when he launched the Medical Innovation Bill in the House of Lords, after his wife, the novelist Josephine Hart, died of a rare type of cancer in 2011. The bill aims to change the law so doctors can try out new treatments on willing patients within a legal parameter without fear of reprisal.
Campaigner: Maurice Saatchi launched the Medical Innovation Bill in the House of Lords after his wife, novelist Josephine Hart died of a rare type of cancer
Brian Dickie. director of research development at the Motor Neurone Disease Association, said: ‘Speeding up access to effective treatments is something we all want, but it is a complicated area. The Association has already called on the European Medical Agency (EMA) and policy makers in the UK into considering a more flexible licensing process that allows earlier testing of new drugs. Patients play a critical part in this debate and Les has raised vital awareness of these issues.’
‘There is a lot of good work done being done by academics, but it hasn’t led to actual change,’ Les says. ‘We need patient groups around the world to get together on this.’
Les knows his campaign will take time. And time is something Les does not have. Sadly, his campaign is most likely be his legacy.
‘Who knows how long I’ll go on,’ Les says. ‘I could be here in four or five years’ time.’ On the other hand, he could be a Stephen Hawking and live into his seventies.
‘I could do,’ he says. ‘I just have to make the best of my life, but I don’t have any long-term plans, apart from the campaign. I’d like to start seeing changes while I’m still breathing, but who knows.’
The campaign is in the process of being turned into a charitable trust so it will carry on after his death. ‘Before my diagnosis, my philosophy was always to enjoy life while you can and leave the world a slightly better place,’ he says.
‘What’s my philosophy now? It’s the same.’