Huntington’s disease can be like an atomic bomb going off
Hilary Benn wants to shine a light on the rare but devastating disorder affecting 8,000 Britons and their families. And, as a fourthgeneration member of a political dynasty, campaigning is in his blood
ACLOSE friend of Hilary Benn’s suffers from rare but incurable Huntington’s disease, a neurodegenerative disorder that can have devastating effects on the body, the brain and the personality. Given its wider ramifications for victims’ families, the Labour MP has understandably chosen to keep their identity confidential.
But, as he explains: “Someone once told me, when they got the diagnosis, it was ‘like an atomic bomb going off in the middle of our family’... this is a horrible disease.” Which explains in part why the Labour backbencher is campaigning to bring more attention to the illness and, he hopes, more research.
Although quite rare – there are only around 8,000 sufferers in the UK – the impact of Huntington’s can be calamitous.
“It’s the fact it takes away the person their loved ones knew,” Benn adds. “That’s what’s almost unique about it. It affects partners and the wider family.”
As MP for Leeds Central, a position he has occupied since 1999, Benn is campaigning alongside the Huntington’s Disease Association for three key actions.
Firstly, he wants all sufferers granted the same high quality of healthcare and drugs. “There is a terrible postcode lottery at the moment because there are some areas where there are care co-ordinators and good help but there are many more areas where those things don’t exist,” he explains.
Secondly, he wants all patients to receive mental health care. Currently, certain health authorities don’t offer this for Huntington’s as they class it an “organic brain disorder” rather than a disorder purely of the mind.
Finally, he wants to see the disease governed by NICE (National Institute for Health and Care Excellence) guidelines so that all patients and carers receive the very best advice possible.
And listening to him talk passionately about sufferers and their families, one can only wish him luck in his efforts.
But then politics and campaigning are a family trait. Sitting in the lobby of Portcullis House, the Westminster offices for more than 200 MPs and their staff, he is several feet below a balcony where a huge painting hangs of his father with, as ever, a pipe clenched between his teeth and a large mug of tea at hand.
INDEED, during his early years, Benn operated very much in the shadow of his famous father, the late and muchadmired Tony Benn, another lifelong Labour MP. In fact, he is a fourth generation Benn politician – both his grandfather and greatgrandfather served in Parliament.
He explains how Huntington’s disease is caused by a faulty gene damaging the nerve cells in the brain and affecting a patient’s movement, perception, thinking, judgment, behaviour and personality.
Clumsiness, stumbling and involuntary movements are common.
Although early symptoms may show at any age, it’s usually between the ages of 30 and 50 that problems develop, gradually worsening for 10 to 25 years until the patient dies. Full-time nursing care is required in the later stages.
As it’s a genetic disorder, there’s a 50-50 chance the child of a Huntington’s sufferer will inherit the disease. Benn describes how many young people whose parents have Huntington’s choose not to get diagnosed themselves. “I think they feel, ‘Do I want the rest of my life, at this stage, to be dominated or burdened by the knowledge?’ Suddenly, ‘Whoomph!’ the world has changed.” Since the disease is usually fatal after 25 years, it naturally raises the thorny question of assisted dying. Benn prefers not to link Huntington’s to euthanasia, insisting it is “a separate matter”.
However, he does point out how the subject was debated by Parliament in depth, back in 2015, and that he himself voted in favour of allowing terminally ill people to be given help in ending their lives with the consent of the high court.
“I did vote for it and the majority of the House of Commons voted against it,” he adds. “That’s on the public record.” Now that he’s just a few months shy of his 70th birthday, it wouldn’t be improper to call Benn a Labour grandee. A former Cabinet Minister under Tony Blair and Gordon Brown, more recently he was Shadow Foreign Secretary under Jeremy Corbyn’s leadership. And it was his name on the Benn Act – the one that prohibited the Government from leaving the European Union without a deal, and cemented his reputation as a political heavyweight.
Born and brought up in west London, he was immersed in politics from an early age.
“I grew up in a household where we talked
about what was going on in the world,” he says. “When we were sitting round the table eating, my parents encouraged me and my two brothers and my sister to talk about that. So I grew up with an interest in what was going on. Of course, both of my parents had a huge influence on me.
“When you’re little, you assume all families are like your own because it’s the only one you know.Then your awareness grows.”
While family connections no doubt eased his entry into politics, Benn insists it wasn’t all plain sailing. “There are some advantages and there are some disadvantages. In the end, you have to be yourself and you have to make your own way in the world.” It’s a world he has navigated adroitly. Among his many achievements, he oversaw the UK’s response to the Boxing Day tsunami, the 2006 Darfur peace agreement in Sudan, and the creation of the South Downs National Park.
Wearing a baggy, dark grey suit – with, like many MPs, a UK-Ukraine badge on the lapel – and his trademark circular glasses, Benn becomes animated when discussing Britain’s healthcare system in general. He points out, for example, how waiting lists for mental health treatment are criminally long.
“Imagine If I broke my leg today and went to St Thomas’s over the river,” he says pointing to the large hospital visible across the Thames. “And they said, ‘I’m terribly sorry but there is a nine-month wait to have your cast put on’. Yet for patients who are mentally unwell, that can be the kind of waiting time you’re talking about.”
And he acknowledges that access to GP surgeries is tragically inconsistent, stressing how, if Labour were elected, they would pay for more doctors and nurses by “getting rid of non-dom status tax arrangements”.
“Some people, if they can’t get access to their GP, they go to the nearest A&E,” he adds. “And look at the pressure on A&E which is in effect acting as a GP of last resort.” Asked whether he is satisfied with the service of his own GP, he says: “I don’t want to talk about my own experience. Different people have different experiences but, overall, you can see the number of people having to wait. These show we have a problem that needs to be fixed.”
BENN is convinced healthcare will be a key battleground in next year’s General Election. He explains how, when he was first elected in 1999, he used to receive multiple letters from constituents complaining of lengthy hospital waiting times. He claims the letters stopped arriving when Labour were in power and waiting times shrank. But since the Conservatives have been in power they have risen again.
“Yes, you had Covid, but we’re still looking at very long waits for surgery,” he insists.
“There’s a lot of public dissatisfaction with the health service. It is a major point of difference between ourselves and the Conservatives and, yes, I think it will figure prominently in the General Election.”
Interview completed, Benn leads our photographer into the tunnel that passes under Bridge Street and Big Ben into the Palace of Westminster. While he poses momentarily for photos, a small traffic jam of employees builds up, all courteously waiting for the photographer to do his work.
Benn seems slightly embarrassed at the kerfuffle he has inadvertently caused and relieved when it’s all over. He admits to being uneasy when the focus is on him as a person rather than on him as a politician. Not for him, personality politics – he is far more comfortable discussing political issues.
And right now, one key issue at the forefront of his mind is the tragic, life-changing disease known as Huntington’s.
‘At the dinner table my parents encouraged us children to talk about what was going on in the world’