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OUCH(UK) Organisation for the Understanding of Cluster Headache

History of OUCH(UK)

Our patron - and chairman - Professor Peter Goadsby credits the NHS with the foundation of OUCH (UK) – the traditional long waits in NHS clinics meant that patients started to talk to one another and asked what each was there to see the Professor about. A handful of people all discovered they had a rare condition called cluster headache and this was how a nucleus of sufferers found one another, which led to forty people finding each other via a website founded by sufferer Simon Bower. The original name was Cluster Headache UK.

An inaugural meeting was held in Rugby in 2001 and following that meeting the charity was formed with a board of six trustees. In 2002, OUCH became a registered charity with the name Organisation for the Understanding of Cluster Headache – OUCH (UK).

The aims of the charity are:

  • provide support for sufferers of cluster headaches and their families

  • increase public awareness of the condition

  • work to improve understanding of the condition, its prevalence and its effects

  • liaise with the medical profession to improve diagnosis and treatment

  • provide information and access to cluster headache sufferers to those engaged in research into the causes, treatments and cure for the condition

  • produce its own database based on the experience of sufferers

  • maintain a website as a source of information and a contact area for those affected, and produce similar literature for those without internet access

Every charity needs to raise funds to be able to achieve its aims and large personal donations from founding members formed the basis of the funds, now maintained by membership fees and fundraising efforts.

One of our single biggest fundraising events has been participation by an ever growing team of runners in the London 10k. Inaugurated in 2003 by Victoria Fairchild a team or runners raised £3,000. The following year organisation of Team OUCH was taken on by Karen Charlton – her father Les was an episodic sufferer and a trustee. The event went from strength to strength every year and in 2013 – our final year of participation in the 10k – the team ran in Les’ memory and the final total was in excess of £15,000.

From that beginning of 40 sufferers, the membership now numbers over 3,000 and climbing.

OUCH has successfully fought for CH sufferers to be included in specifications for oxygen therapy to ensure CH sufferers needs are correctly met.

OUCH members have taken part in research trials and studies into oxygen therapy, sleep patterns, drug therapies, surgical techniques and questionnaires and campaigns on behalf of headache sufferers.

OUCH is a founding member of Headache UK – an organisation of headache support charities and medical organisations, with the aim of raising the profile of all headache conditions, having a voice in Parliament through the All Party Parliamentary Group on Headache Disorders. We’ve even had two OUCH members speak at Commons receptions.

In 2002 OUCH produced the first copy of its own magazine CHit CHat and a small booklet on cluster headache written by the Professor’s then registrar, Dr Manjit Matharu. Every new member received a copy and still do receive an updated version of that original document.

Also in 2002, Susi Nericci - a founding trustee - inaugurated the OUCH helpline, at that time fielding about four or five calls a month. The first national conference was also held in 2002

2003 was a busy year for OUCH; one of our members, Mike Pollock (our late chairman) was the first patient in the UK to receive an occipital nerve stimulator implant – a procedure now available on the NHS. In the same year another successful national conference was held in Birmingham.

Also in 2003, the first of our members to apply for Disability Living Allowance were successful in their applications. Items on cluster headache began to appear in the media on CH and the level of calls to the helpline increased a great deal and more volunteer members were recruited on a shift basis to take the calls.

In 2004 OUCH was given a grant by British Telecom to finance a mail shot to 45,000 GPs in the UK with details of recognising, diagnosing and treating cluster headache.

By 2005, OUCH’s helpline was dealing with anything from 20 to 60 calls a month, depending on whether a media item had appeared to boost the call number, or when a peak time of year for going into cycle occurred. We set up a training scheme for volunteers and it continues currently in that form. 

Membership reached over 1,400 by 2006 and the new Home Oxygen Therapy scheme came into effect and cluster headache was specifically mentioned in the specification for the scheme.

2007 was a landmark year when one of our members, a human resources specialist, discovered Employment Tribunal case law – Hood v London Casinos Management, 2002, which stated cluster headache was a disability. The news aided many members in funding and benefits applications.

2008 saw OUCH at the House of Commons with Headache UK, when one of our members spoke on her life as a CH sufferer and Professor Goadsby appealed to Parliament to improve funding for training doctors so that the neurology training covers a much wider base and headaches in particular. He also urged the Members of Parliament present to support funding for research on headache conditions, treatment and diagnosis.

2009 saw a step change in member meetings, when the Trustees decided to adopt a programme of regional meetings over a two year spread, so that once every two years a meeting would take place somewhere near enough for members to make it in a day. High attendances have proved this a worthwhile exercise – attendance at national conferences was dropping each year and the concomitant expenses of hiring a large venue, catering and cost to each member were rising.

Also in 2009, OUCH held a joint meeting with Migraine Trust – the ‘Rare Headache Day,’ with eminent speakers from all over the UK, including the Professor.

In 2010, one of our members was asked to contribute to the European Headache Handbook, a publication for health professionals. She gave an overview of the importance of the role support organisations have with sufferers of rare headache conditions.

In May of that year OUCH held a very successful Meet the Experts day organised by Headache Masterclass, at which several expert neurological health professionals were speakers.

2011 was a sad year for OUCH, when our then chairman, Les Charlton, passed away. It was a devastating loss, but the board of trustees were determined to carry on the good work that Les had carried out in his five years as chair of the charity. In future the OUCH Achievement Award will be known as the Les Charlton award for services to headache sufferers.

And so to 2012, the year the 10k runners ran in Les’ memory and we raised a record amount in one go! Also, the daughter of a sufferer organised and raised funds to produce OUCH first calendar – a nude calendar at that!

2013  saw successful and well attended meetings in York - the first in the Yorkshire area - and London at the 'home' of CH, the National Hospital for Neurology & Neurosurgery.  OUCH launched a study of demand valve delivery of ultra high flow oxygen and members participated in that study and Dr Marin's study into the Gammacore device.  Four new trustees were appointed, Dorothy Chapman, Scott Bruce, Sandie Bisset and Steve Hathaway.  Funds received a major boost from the sale of the now famous OUCH nude calendar and the organiser promises a new national fund-raising event for 2014.

2014 brought a meeting in Shrewsbury, attracting members from Wales, the north-west and border country.  Dr Giorgio Lambru from St Thomas hospital gave a presentation for the first time, and he outlined the work of the Pain Management Group at St Thomas' and their multi-discplinary approach to treating cluster headache.  In July OUCH went north of Hadrian's Wall with a well attended meeting at Kirkcaldy and then in October the largest ever gathering of cluster headache sufferers in the world to date was held at St Thomas' Hospital with Professor Goadsby giving the keynote address and asking us to all 'stand up for cluster headache' and he tweeted the photograph he took during his address!   

2015 was a sad year for OUCH when our much loved and respected then chairman, Mike Pollock, died of cancer after a long battle bravely fought. Mike had been a member since 2002 and in 2004 he became a trustee and also a helpline volunteer. He was treasurer between 2006 and 2011 and became chairman in 2011. Mike made an incalculable contribution to the fight against cluster headache and pioneered several new treatment avenues for CH sufferers. He will be much missed.

Liverpool Institute of Medicine was the venue for a meeting in June of 2015, members and friends gathered for an interesting and entertaining day and a meeting at Guys' Hospital in November was well attended. Two new research trials were announced, one for CGRPs [calcitonin gene related peptides] and an in-depth study of episodic sufferers; and members were encouraged to participate in both.

To round off a year of mixed fortunes, OUCH produced its first charity Christmas cards which proved a resounding success.

 

 

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