OUCH(UK) Organisation for the Understanding of Cluster Headache

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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.

 

2016

In 2016 the Cluster Headache Awareness Day,

Another landmark that year was the publication by NICE of the Headache Pathways specifically aimed at GPs to assist with diagnosis, prescribing and referral.  Our Advice line keeps a note of the reason for calls from sufferers and the lead topic is always GPs who misdiagnose, mis-prescribe, under-prescibe, and are reluctant to refer sufferers out of area.  The NICE pathway covered all of those points.  Sadly there are still some GPs who refuse to prescribe at all, or refer on to a secondary clinician. 

One notable fundraising effort that year was the husband of a sufferer who sailed single-handed round the coast of the UK, and raised sponsorship online as he went along with daily briefings on his progress.  He had to have a new engine fitted half way through the trip, but he carried on undaunted and was given a special award for this huge effort.

Our first meeting in the north of Scotland was at Aberdeen and was well attended.

2017

May 5 and 6 of that year during Headache awareness week, BBC breakfast featured a trustee of OUCH talking about their experiences as a CH sufferer,  and videos of sufferer members during attacks.  Two members fielded questions by life online comment.   And two members were interviewed on BBC 5 live.  Looking back OUCH was making progress in the media!   This year saw the institution of the Mike Pollock Achievement Award and the first winner was a very deserving gentleman who tours the country in his OUCH vehicle raising awareness and assisting sufferers online wherever and however he can, despite being a severe sufferer himself.  The Les Charlton award previously for outstanding achievement was re-titled to recognise the contributions that health professionals are making to support sufferers and raise awareness of the condition.  The first recipient of this newly christened award was an oxygen engineer who delivers 02 to sufferers and raises awareness with of OUCH with people who are newly diagnosed, and at every opportunity ensures that senior management are aware of the problems and difficulties for CH sufferers who need 02. 

On the oxygen front, a new form came into being that GPs have to use to prescribe oxygen, in the form of an assessment of the patient’s home, the way they live [house of multiple occupation, semi-detached, flat etc], and whether the patient smokes amongst other questions.  The GP then assesses the answers to decide if the patient may have 02.  That form is submitted along with the Home Oxygen Order Form; without it the patient is automatically refused oxygen.  So it is important sufferers were made aware of this assessment and could prepare accordingly.

A busy and eventful year also saw the first meeting at the historic and world famous St Bartholomew’s Hospital, known to all as Barts.  It was a sell out attendance. 

2018

We saw the loss of another valued member Carolyn Matheson who passed away.  She was an advice line volunteer and despite suffering from more than one headache condition, she was always a regular helper at meetings and visited members in hospital in London.  She also served as one of the welcome volunteers at the 2012 London Olympics.

Our first meeting in the North East took place at the Royal Victoria Infirmary in Newcastle and was again a sell out event with topline speakers from the medical world and presentations from sufferers. 

And later that year a further meeting was at King’s College Hospital on 21st October.

2019

A summer meeting St Thomas’ was the start point of OUCH’s online shop which has been very successful.

Later that year further trustees were appointed to the board and each area of expertise was delegated to a specific person, rather than one person covering all the bases for administration.

2020

This momentous year started off with the appointment of one of the trustees to the Chief Scientific Officer’s NHS Oxygen Safety Group.  A great step forward for OUCH as oxygen is sometimes the only treatment some sufferers can have.  Other members of the group come from CCGs, oxygen supply companies, Emergency Services and patient representative organisations. 

Then along came COVID and once again OUCH stepped up to the plate as calls from desperate members reach us saying that they had been told by the oxygen companies that their oxygen would be taken away – all of it – because CH was only a headache and the oxygen was needed for Covid patients.  OUCH contacted all the oxygen companies and we were assured that there were more than enough supplies of home oxygen, and that in any case home oxygen would not be of use to Covid patients who would be on ventilators because they were unable to breathe by themselves.  With Home oxygen you have to be capable of breathing on your own.  Further, the cylinders we use would be gone in minutes in a hospital setting, whether the patient could breathe unassisted or not.

So 2020, was all about oxygen!

2021

This is not yet an entry for the entire year, but it will be a particularly special one for OUCH members and CH sufferers throughout the world, as our patron and chairman, Professor Peter Goadsby has been awarded the Brain Prize along with three other esteemed international health professionals.  This prestigious award was for their ground breaking work into the cause and treatment of migraine and other severe headache conditions.  We are indeed delighted for all the recipients and for our own Professor Goadsby in particular.

 

 

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© OUCH(uk) 2021 | email: info@ouchuk.org
Registered Charity No. 1091919 | Registered in England Company No. 04339368