Ashley Fulwood - the Derbyshire-born chief executive of OCD-UK
PUBLISHED: 00:00 04 October 2018
© Phil Ainsworth
David Marley talks to Ashley Fulwood the Derbyshire-born chief executive of OCD-UK who swapped the corporate city trading world for a life leading a national health charity.
For almost all of his late teenage years and early 20s Ashley Fulwood’s days were occupied with a constant struggle to avoid becoming contaminated with dirt and germs. He would spend up to three hours a day washing and scrubbing his body over and over again in the bath tub, before repeating the same incessant ritual in the shower for a further 30 to 40 minutes.
For Ashley it was common to get through two bars of soap each day and dozens of bottles of shampoo and shower gel every week and despite knowing this behaviour was not typical he was powerless to control his obsessive actions.
‘I’ve come a long way since then,’ smiles Ashley. ‘But for far too long I couldn’t even shake hands with someone without rushing to the bathroom to wash my hands.’
At the time Ashley was working in London as an IT technical support consultant for a financial company and the stress of living in the capital was making his condition even worse. ‘The thought of using a public toilet was torture – so for over 10 years I would do everything I could to avoid doing so. I’d dodge food and drink so that I could get through the day and sometimes I would even pretend to be ill so that I could dash home to use my own bathroom.’
On particularly taxing days all Ashley wanted to do when he got home was to take off his work clothes and spend hours washing to rid his body of germs.
‘On one occasion I spent over five hours in the bathroom. And on at least five occasions in two years I found myself having to throw my jacket, trousers, shirt, tie, socks and shoes away when I got home – and this was all because my fear of contamination was ruling my life.’
The financial cost of replacing his clothes was running into the thousands of pounds – and his washing rituals were eating up every waking second of his life. ‘It was all taking a terrible toll – I had no social life or time for girlfriends; and I felt so imprisoned by the condition,’ he remembers.
The dread of germs and an irresistible desire to feel clean finally led Ashley to seek help and therapy to take control of his disorder. He accessed his private work-based health insurance and referred himself to the Priory Hospital in Southgate, North London. ‘Although the treatment did not particularly help me, it was the beginning of recognising what I was suffering from. Further reading on the subject of obsessive-complusive disorder allowed me to start to have the confidence to reduce my washing time,’ he explains.
These first brave steps led Ashley to take a leap of faith and give up his job in the City to set up a national charity to help other sufferers of the disorder. A chance meeting with a friend while out shopping in Oxford Street in autumn 2003, encouraged Ashley to take the first steps to found OCD-UK – which at the time was the UK’s newest and most dynamic charity dedicated to helping people with the disorder.
‘That friend was the much-respected business leader, Steve Sharpe. He and I were chatting about the lack of one dedicated charity working for people with obsessive-compulusive disorder,’ Ashley explains. ‘In that moment Steve wrote a cheque and told me to get the charity up and running.’
In early 2004, Ashley had registered OCD-UK with the Charity Commission and started to create a website as a way of sharing information about the disorder. ‘I suppose looking back it was a brave move to quit my job as an IT consultant for Bloomberg in Finsbury Square,’ he says.
‘I wasn’t paid for the first year and had to live off my savings to get the charity up and running. But I never regretted it for a second – and 15 years later the charity has become my life and I love it.’
For the first 13 years of the charity Ashley ran it from his home but as it has steadily expanded he made the decision to return to his native Derbyshire and establish a permanent base for the organisation.
‘It seemed so natural to come back to Derbyshire,’ smiles Ashley. ‘A place I have so many happy memories of.’ As a youngster he attended Longmoor Primary School in Long Eaton, before going on to study at Friesland Secondary School in Sandiacre, where he spent most of his spare time supporting his beloved Nottingham Forest Football Club.
‘It was here, growing up as a young boy that I had overcome many of the challenges I had in early life,’ he says. ‘I was born at the Derby Royal Infirmary and spent many of my childhood years in and out of the children’s ward in Derby to receive treatment on my underdeveloped leg.’
And up until the age of 17 Ashley had also suffered from a speech problem. ‘This had a huge impact on my life – however, I was determined never to let it get me down. With my first wage packet I took myself off to a speech therapist and she cured it within two sessions,’ he says. ‘However, looking back now I suppose it was around this time that the first signs of my OCD started to emerge but at the time there was very little known about the condition.’
In typically positive mood and with a refreshing open approach to his condition, he simply put his OCD down to another one of the many daily chores he had to cope with. ‘I’ve always had to live with a certain amount of adversity in my life – but I have always remained positive about it,’ he says. ‘In fact I think this strength of character helped position me in a good place to drive and grow the charity in its early years.’
It was in those formative years that the charity was to receive a boost from an unlikely source – all the way from Hollywood. In autumn 2004 Ashley was approached by producers of the blockbuster film The Aviator, which depicts the life of billionaire Howard Hughes, to be a beneficiary of a special screening in London.
‘I’d been asked to attend the UK’s first screening of The Aviator at a hotel in Soho along with 50 members of our newly formed charity,’ Ashley recalls. ‘We were stunned when Leonardo DiCaprio – who played Hughes in the film – made a special guest appearance during the screening.’
DiCaprio told the audience, which included film producers, directors and professionals from the medical world of OCD, about how the actors had been determined to understand the impact of the condition during the filming. ‘I was really impressed that the star’s portrayal of Hughes was not sensationalised,’ he explains. ‘We were also delighted to receive over £5,000 from ticket sales from the screening – it really helped us raise our profile as a new charity working in an underreported and often misunderstood sphere of the mental health world.’
As a relatively young organisation most of the charity’s funds come from its supporters and members. ‘For almost all of our 15 years we have been entirely self-funding,’ he explains. ‘Our members are our greatest supporters and together they love to buy our Christmas cards and take part in fundraising, including running and cycling events.’
Ashley himself can often be seen donning brightly-coloured logo-branded clothing for the charity – most recently to take part in a 100-mile cycling challenge in London to raise awareness.
‘Working for the charity is a true calling and vocation for me,’ says Ashley. ‘I love to raise awareness of OCD – and cycling is my other passion, so you’ll often get a glimpse of me in charity lycra preparing for another challenge! And there’s nowhere better to prepare yourself for a cycling event than in the hills of Derbyshire.’
Today the charity boasts over 800 members and supporters – with an age range from 16 years to 80 and a geographical spread from Derbyshire to Australia – and it appears to be going from strength to strength. It has just landed a three-year funding grant from BBC Children in Need to support young people with OCD to share their experiences across the East Midlands. High-profile supporters include actor Ian Puleston Davies, best known for his role in ITV’s Coronation Street. And the charity plans to open a new headquarters later in the autumn.
With this increased public awareness, Ashley is more determined than ever not to take his eye off new and emerging challenges for the charity. ‘For far too long OCD has been misrepresented and misreported on the television and in the media,’ he says. ‘People often think that it is about cleaning and lining things up carefully – but many people suffer from far more intrusive thoughts and it should never be trivialised. After all, can you imagine how terrible it must be to have horrible, graphic thoughts that you may accidently stab a loved one with a kitchen knife when cooking and having that thought remaining in your head, every day?’
For a tiny number of the charity’s supporters these mental images are sadly a daily reality. ‘And that’s why I get so frustrated when television producers undermine our work,’ he says. Ashley highlights a recent television programme as a bad example of how the media can fail to present a fair and balanced approach to the condition.
‘I don’t think any one individual goes out to mock OCD deliberately but if the condition is trivialised for the sake of grabbing headlines it is very disappointing. For many of us OCD has become the poor relation of the mental health world – and television programmes mocking it only make it so much harder for those suffering from its effects to seek support and help.’
With a determined and passionate chief executive, OCD-UK is in a remarkably strong position to grow and help many people and their families recover from the disorder.
As for Ashley his personal recovery from OCD goes on. ‘I suppose with therapy I’m about 90 per cent recovered – and I’m determined to overcome the last 10 per cent as soon as I can,’ he smiles.
For more information about OCD-UK and to make a donation visit www.ocduk.org or call 03332 127890.