Mike joined OUCH in 2002 and became a Trustee in 2003. He served as treasurer for a couple of years and in 2011 he was unanimously elected chairman. During the 12 years he has been a member, Mike also volunteered on the helpline and hundreds of sufferers have had his valuable advice, guidance and support, sometimes to the point of him driving round to see them and take oxygen for them to try. He also attended employment tribunals and benefits hearings, assisting sufferers in the battle for fair treatment from employers and applying for benefits for this literally disabling condition. He fought this final battle with great courage, dignity and humour, and right up until a few days before he passed away he was still involving himself in OUCH business. We will probably never know the full extent of the tireless work that Mike did for and on behalf of sufferers, not just in the UK, but all over the world.
Mike was a gentleman – a gentle man – totally selfless, generous, warm-hearted and loving. Through Mike's efforts and hard work, awareness of cluster headache has progressed to the level that OUCH is recognised as an expert patient group by the NHS – they contacted Mike to ask for our details to put on the NHS Direct website. Mike pioneered the occipital nerve stimulator implant procedure as the first recipient in the UK. Hundreds of us have had this procedure and it has changed our lives for the better. Mike discovered by trial and error that a triptan tablet taken at night could give a sufferer a night's painfree sleep, much needed when you are in a severe bout or if you are a chronic sufferer, as Mike was. He discovered the half life properties of another tablet which enables sufferers to get through 24 hours without an attack. Again giving a respite to severe sufferers and ensuring that sufferers don't miss a family celebration, can give presentations, attend interviews, in fact any situation where you really do not need an CH attack. After a trip to the United States where he tried ultra high flow oxygen, he was instrumental in setting up the diary study which OUCH is conducting and which has brought relief to many severe sufferers.
Just eighteen months ago Mike authored a report on treatment costs to the NHS for CH sufferers and he found that if oxygen was properly and appropriately prescribed, there would be a saving of millions of pounds a year to the NHS. Mike followed up anything and everything that might help CH sufferers, because as a chronic sufferer he well understood what living with CH was like.
In the four years of his chairmanship he has forged links with consultants, headache clinics, headache nurses, support groups, pharmaceutical companies, the Department of Health and the NHS. He has spoken at parliamentary receptions for the All Party Parliamentary Group on Headache Disorders and taken up every interview opportunity in all media.
Mike's funeral took place at Golders Green Crematorium on 24 June. His brother Philip gave the family eulogy, filled with humour and warmth and Professor Goadsby gave a very moving eulogy on behalf of OUCH, honouring Mike for all he had done to promote awareness of CH, its treatment and diagnosis. There were no flowers at Mike's specific request, but instead donations to OUCH (UK).
OUCH owes so very much to this truly unique and wonderful man – the foregoing only scratches the surface of Mike's achievements in raising awareness of CH, actively supporting sufferers, and constantly trying to find treatments that will help; and, as ever, working towards that wonderful day when there is a cure.
Our heartfelt sympathies are extended to Mike's lovely wife Jane, his son Luke and partner Diana, as well as his wider family.
Messages of condolence may be sent by e-mail to: val@ouchuk.org, or by post to:
OUCH (UK)
P O Box 62
Tenby
SA70 9AG
