A BACKGROUND TO THE MULTIPLE SCLEROSIS (MS) THERAPY CENTRES OF THE UK AND THE REPUBLIC OF IRELAND Christopher Fox-Walker BA(Hons) There are 65 hyperbaric facilities in the British Isles owned and operated by patients to provide treatment for multiple sclerosis. There are 12 centres in Scotland, three in Wales, three in N. Ireland and three in the Republic of Ireland. Many of the centres have more than one chamber and so the total number of chambers is over 100. Most of the chambers are multi-place chambers which use compressed-air at pressures from 1.5 to 2 ata with oxygen provided using built in breathing systems and oro nasal masks or hoods. Hyperbaric oxygen treatment for MS patients In the 1970’s research in four countries indicated that patients with MS could obtain symptomatic relief from hyperbaric oxygen treatment. The first report was from Czechoslovakia where 26 patients had participated in a study. Benefits were described but were reported as transient. Two Italian physicians in 1978, Palotta in Naples and Zannini in Genoa also reported benefit and Baixe in Toulon presented his findings at the EUBS (European Underwater Baromedical Society) meeting held in Toulon in 1978. The same year Richard Neubauer published the first of two reports in the Journal of the Florida Medical Association. His second paper reported that if the treatment pressure was increased to 2 ata benefits seen at a lower pressure could be lost but regained if treatment was resumed at a lower pressure. This was the first time that it was demonstrated that pressures as low as 1.5 ata could be therapeutic. The UK Centres In 1982 a small group of patients in Dundee participated in a study organised by Dr Philip James, now Emeritus Professor of Medicine, University of Dundee, and monitored by Dr Duncan Davidson a local neurologist. Dr James had become aware of the international studies, particularly the reports of Dr Richard Neubauer in Florida on the damage to the nervous system in divers. In 1982 he published a detailed comparison of MS to decompression sickness in the Lancet suggesting that the first event in MS was due to subacute fat embolism. The article carried an addendum which described the successful treatment with hyperbaric oxygenation of a young man who developed symptoms in 1981 typical of MS within a few hours of an automobile accident. A two compartment pressure chamber had been provided by an American diving company and installed in a private hospital in Dundee for the treatment of a traumatic leg injury in a company employee. Five MS patients were recruited, examined and treated in the spring of 1982. The chamber was transferred back to Aberdeen but the MS patients wanted to continue the oxygen treatment. An old aviation chamber which had been used to study decompression sickness in aviators at the Institute of Aviation Medicine at Farnborough during WW2 was found on a farm in Bedford. It had been converted for use in diving and was transported to Scotland and installed in a unit on an industrial estate in Dundee. The Fischer Trial, a double-blind controlled trial in New York University was presented at a hyperbaric meeting in Long Beach in June of 1982. The study was finally published in the New England Journal of Medicine January 27th 1983. The trial, costing $250,000, was funded by the National Multiple Sclerosis Society of America. Publicity in the Sunday Times on the treatment and improvement of an eye disorder in a young doctor with MS increased interest and the waiting list in Dundee climbed to 400 patients. Other centres were created with help from a charity, Action and Research into Multiple Sclerosis (ARMS) which was created in 1974 by the husband of an MS sufferer, John Simkins. Its main object was Self Help and a number of small research programmes were supported. The hyperbaric centres were registered as independent charities as Friends of ARMS. By 1984 Dr David Perrins, working in Sweden with Dr Per Oluf Barr, became involved with one of the centres in Abingdon near Oxford. He witnessed the changes in patients from oxygen treatment and was soon employed on a part-time basis by ARMS to collect results from the centres. By the end of the 1980’s over forty centres had been established and the growth has continued with the centres opening in Cardigan, Wales and in Cornwall. The total number of centres in 2015 is 65. In 1995 several centres in the UK provided hyperbaric treatment for children with cerebral palsy (CP) after the Hyperbaric Oxygen Trust had been formed by Linda Scotson whose son, Doran, had developed brain injury associated with jaundice shortly after birth. He was 14 when he started hyperbaric treatment under the supervision of Dr James and significant benefits were confirmed by his school teachers and neighbours unaware that he was having any treatment. The Trust, which has now changed its name to Advance, treated several children from Canada and their mothers, on returning to Canada, pressured the government into funding the hyperbaric trials in children with CP supervised by Dr Pierre Marois. Much work has been done to make parents aware of hyperbaric oxygen treatment, especially via the Internet, and many parents from the USA, Canada and Europe continue to bring their children to the UK for treatment because it is more affordable in a not-for-profit charity setting. ARMS was made insolvent early in 1990's but the centres continued forming the MS National Therapy Centres. The UK centres are registered non-profit-making charities and limited companies and registered with the Charity Commissioners. The centres are fully insured and regularly inspected by the insurers and the Health & Safety Executive. They are also registered with the Care Quality Commission; which organisation is underpinned by the Private and Voluntary Healthcare Regulations which recognises hyperbaric treatment for ‘neurological conditions’ such as MS and Cerebral Palsy. The centre in the town of Reading was rebuilt at a cost of £1 million, through private fundraising activities and donations, and opened in a special ceremony by The Princess Royal, HRH Princess Ann in 1998. Through the vigorous efforts of the fundraising team the Sussex MS Treatment Centre in Southwick was enlarged and renovated at a cost of £180,000 in 2009/10. In 2013 the Centre was awarded The Queen’s Award for Voluntary Service. Over the last 35 years there have been in excess of 3 million hours of treatment involving over 25,000 MS patients without a single significant patient incident or injury. Statistical evidence from the centres indicates that 80% of people with MS who have started HBOT, and continued, have derived benefit in the management of their symptoms. After 35 years providing support for patients with multiple sclerosis the MS Therapy centres have been a resounding success representing a major step forward in the initiative to provide care in the community. One of the most dramatic successes has been to have Type 3 ‘barochambers’ accepted by the Care Quality Commission for the treatment of neurological conditions. The term ‘hyperbaric’ is now reserved for high pressure diving chambers. In 2008 the government agreed to the deregulation of these chambers. A chamber is a place of safety both physically and medically. This is the first time in the history of medicine a medical treatment has been deregulated by government. Much has changed scientifically; Scandinavian neurologists have shown that the immune changes recorded in multiple sclerosis are also found in many other neurological conditions including head injury and stroke. It seems they are not causing the disease but are evidence of repair. The key feature of multiple sclerosis is now recognised to be inflammation and here oxygen is the key. Over the last decade oxygen has been shown to control genes including the genes involved in inflammation. From a total of 30 genes recognised ten years ago shown to be regulated by oxygen the figure has grown to 8,000. It has also been found that oxygen controls the heart rate and blood flow in combination with another gas called nitric oxide actually manufactured by the cells lining blood vessels. So we are living in exciting times and the patients, their relatives and carers can justifiably be proud of the network of 65 centres that is the result of their efforts. Patients can access treatment by self-referral. Being independent charities they are financed entirely by voluntary donations and fundraising activities organised by a board of unpaid, volunteer Trustees. Each centre has a salaried Manager with other helpers being unpaid volunteers of the executive committee and pressure chamber operators. Members pay an annual membership fee of £10. The centres are registered self-funding charities and are not permitted to charge for HBOT but they are permitted to ask for a donation, usually £5 -£10, towards the cost of each treatment session. (Private HBOT at say St John’s in London start at £200 per hour). New members are asked to notify their own doctor of their intention to commence HBOT. The centres act on the principles of the NHS whereby people receive treatment according to need and not according to their ability to pay. HBOT is not a cure and it does not repair existing damage. However, the trials carried out by Professor James and Dr Perrins have shown that long-term, regular HBOT can slow down the progression of the symptoms. Christopher Fox-Walker BA (Hons) Medical information provided by Emeritus Professor of Medicine, Philip James, University of Dundee. PS A profound and definitive book entitled “Oxygen and the Brain. The Journey Of Our Lifetime”, by Emeritus Professor Philip James has been published by Best Publishing Company in Florida, USA. The price is about £35. This book is to be serialised in the Daily Telegraph this autumn 2015 and will be available from Telegraph Books.