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The MS National Therapy Centres
21 Years of Service
In 1982 a group of patients in Dundee decided, after
trying hyperbaric oxygen treatment in a diving chamber, to start their own
centre. An old RAF chamber, first used in Farnborough in 1944 to study the
‘bends’ in aircrew, was 
transported from a farm in Bedford to Dundee and
installed in an industrial unit - number 12a in Peddie Street. Several hundred
MS patients were treated over the following year and these patients, having
found benefit, inspired others to start their own centres in Scotland, often in
the face of determined opposition. Centres were soon started in England,
followed by Wales and then Northern Ireland. So now there are over 64 centres in
operation. This includes three in the Republic of Ireland, which requires the
overall title to be the MS National Therapy Centres of the Islands off Brittany,
rather than the British Isles. Joining together under the title of the MS
National Therapy Centres is critically important as witnessed recently by the
problems created by the introduction of the Private and Voluntary Healthcare
Regulations.
The Expert Patient
Many
things have changed over the last 21 years, and one of the most dramatic changes
has been in the attitude of senior doctors, in accepting that patients can be
experts. A Department of Health
document entitled “The Expert Patient: A
New Approach to Chronic Disease Management in the 21st Century”
outlines the challenges our society faces because so many people are living
longer. At last there is the recognition by doctors, nurses and other health
professionals that when patients have suffered for years, they “understand
their disease better than we do.” Dis ease means not being at ease and it is
obvious that those w
ho experience symptoms know them best. The document goes on
to refer to this experience as an untapped resource and a partnership is needed
between patients and doctors which is based on mutual respect and perhaps
doctors will spend more time listening. It
is stated that patients “can become key decision makers in the treatment
process.” This is restating the position of the General Medical Council, that
doctors are there to advise patients and warns that
they must not allow their personal beliefs to influence the patient’s
choice of treatment. This is very important for patients attending the Centres
because many doctors, not having been taught the importance of pressure in
oxygen delivery at medical school, often state that they do
not believe in hyperbaric oxygenation. Note also that doctors cannot
‘consent’ to a treatment, that right belongs solely to the patient. It
should be remembered that patients are much more motivated to get better than
their doctors are to make them so! One
of the chronic illnesses mentioned in the ‘Expert Patient’ is, not
surprisingly, multiple sclerosis - ‘MS’ and the importance of self help is
emphasised. Self help has been the cornerstone of the MS National Therapy Centre
movement in providing oxygen treatment, physiotherapy and other therapies within
the community.
The Private and Voluntary Health Care Regulations
The
second development, which Centres have viewed with mixed feelings, is the
introduction of the Private and Voluntary Health Care Regulations. Originally
designed to regulate private medicine, such as cosmetic surgery and abortion
clinics, they were broadened to include the voluntary sector. The regulations
introduced terms like purchaser and provider,
which are not appropriate to a self help movement, because patients treat
themselves in just the same way as taking over-the-counter medicines. The
introduction of a responsible person has also caused some concern, but
this responsibility is only for the equipment, for example, the chambers used
for hyperbaric oxygen treatment and the premises, but it is not for the
treatment itself. The Centres enable access to the treatment, but it is the
patient’s choice to go into the chamber and to breathe the extra oxygen. This
is accepted by the Department of Health. The question of insurance has been
raised many times but it is most important to understand that the insurance
covers the building, the chamber, the associated equipment and its operation. It
is not insurance for the treatment, that is breathing oxygen,
because it is self
administered. Perhaps an example will help clarify the situation. Aspirin can be
bought from a chemist – or even a supermarket – without a prescription. It
is the patient’s choice to take it without any insurance to cover the risks
involved, although of course the NHS provides some cover by treating the side
effects! If a patient were to choke on the tablet, or bleed from a
stomach ulcer they would not sue the chemist who sold them the drug or the
manufacturer that made it.
The
concept of self help is accepted by the Department of Health and it is
critically important not to lose sight of the fact that those attending the
Centres are helping themselves. It is easy to forget this, especially when
Centres are becoming more sophisticated and are involving more professionals.
Self help is the central principle in the operation of our centres. Patients
coming to Centres must actually join the group, otherwise a ‘them and us’
situation is created. Although the
fees charged by the Regulators are an obvious burden, there are many positive
aspects from the recognition by the Department of Health, not least of which is
the right to access this treatment, which is denied to patients in the Health
Service. To have the most powerful
intervention in medicine in the hands of patients in the community is a
privilege which would be impossible in many other countries in the World. An
editorial in the British Medical Journal in 1984 referred to the use of oxygen
under hyperbaric conditions as ‘high technology’ and in most countries the
medical profession has adopted this view, restricting hyperbaric oxygen
treatment to highly selected chronic conditions like problem wounds and in the
USA a session can cost up to $1500. The
document ‘Independent Healthcare’ which accompanies the regulations
unfortunately states that the Centres are owned by the MS Society despite the
fact that we pointed out that this was not correct in a response to the
Consultative Document. The Regulations allow patients to use hyperbaric
treatment for ‘neurological
conditions’ such as multiple sclerosis and cerebral palsy and neurological
conditions includes patients with stroke and head injury. There is no comment on
the value of the treatment because the Department of Health does not possess
experts to express such an opinion but it requires an evidence based approach.
The National Centre for Clinical Excellence
In
the past the Department of Health has endorsed treatment based on the opinions
of the NHS consultants in the appropriate speciality, but often it has been the
powerful groups such as the cardiac surgeons who have had the lion’s share.
Now it turns to quangos such as the National Centre for Clinical
Excellence, (NICE) to bring together the best objective evidence for a given
treatment, because the medical profession is notoriously susceptible to the
whims of fashion. Fashionable ideas promoted by those eminent in a particular
field have a very powerful influence on thinking especially because the same
doctors are also likely to be involved in teaching medical students. This cycle
often reinforces some bizarre opinions, such as immunosuppressive drugs in the
treatment of patients with multiple sclerosis.
NICE has commissioned a review of the use of hyperbaric
oxygen (note the incorrect term) for MS patients and concluded that there is no
evidence and so it should not be used. This has obviously raised concern in the
Centres but it is incorrect. To understand why the doctors who conducted the
review reached their opinion it is necessary to examine the evidence
based medicine approach used. The
first stage is that oxygen must be regarded as a drug which requires to be
tested as if it is a new drug. Drugs have been having some bad press recently
following the comment by Allen Roses a senior executive at Glaxo Smith Kline
that more than 90 percent of drugs work effectively in only 30 to 50 percent of
patients. It is easier to view
oxygen as a drug when it is described as hyperbaric
because it then appears to be somehow different to the ordinary oxygen we
breathe. If oxygen is regarded as a
drug then an examination of the trials should indicate if there is sufficient
evidence to endorse oxygen treatment. The grammatically correct term hyperbaric oxygenation is often degraded to hyperbaric oxygen, which tends to imply that the oxygen is somehow
different – not the same oxygen we breathe or use in hospital.
An editorial in the Lancet in 1997 discussed a remarkable parallel to the
use of oxygen treatment for the symptoms of
MS.
An Evidence Based Non Sense
We
all stop breathing during sleep, usually only for a few seconds, but some
patients stop breathing for much longer. 
It is known as sleep apnoea and is
usually associated with some degree of airway obstruction and so is associated
with snoring. Because these patients have very disturbed sleep, they are
constantly tired during the day. Their quality of life can be dramatically
improved by continuous positive airway pressure (CPAP) and the rest of us can
also be safer on our roads because, untreated, such patients have a seven fold
increase in driving accidents! Thousands of patients around the World use CPAP
equipment every night, although only one double blind controlled trial has ever
been done which was positive. In 1996 the North Yorkshire Health Authority,
concerned about the rising costs of sleep clinics and CPAP, – the equipment
costs £600 – withdrew funding. To justify this they cited a literature review
of CPAP which, of course, pointed out that there was only one trial and chose to
ignore the many uncontrolled studies and enormous clinical experience. In
essence what was being challenged was the importance of sleep, of breathing and
of the substance that requires us to breathe, oxygen. All of these are measured
in patients with sleep apnoea before the equipment is prescribed. The patients
do not like wearing the masks, much like MS patients! I do not know what
happened in North Yorkshire, but I assume that patients won the day because they
would be strongly supported by their consultants. Sadly, despite several
positive trials of oxygen treatment in patients with very long standing MS, they
have had to fight for more oxygen without support from the neurologists who have
actually opposed this treatment. The majority of patients, including those with
MS trust doctors not to discard something that will help, especially when it is
natural and without side effects, but this trust has been betrayed. The use of
oxygen for patients with MS is supported by the best double-blind, randomised,
controlled trial in the history of medicine. This is termed by NICE Class 1
evidence, but the review of the studies used by NICE chose to include poorly
done studies where the bias of the investigators was clear. The great majority
of doctors do not understand the importance of barometric pressure or even
oxygen itself and they are afraid. It is difficult to imagine a more serious
confrontation with a doctor than to suggest they do not know how to use oxygen
properly. So is there an evidence base for oxygen? Quite simply nothing ever gets better without it! However, the
trials conducted in the 1980’s certainly showed benefit from oxygen but only
one was properly conducted and this will be discussed later.
Hyperbaric Oxygen Treatment and Expert Patients
The
patients who founded the MS National Therapy Centres did so simply because they
have found it helpful to breathe a higher dose of oxygen than is normally
available in hospitals. They had not been influenced by a massive 
advertising
campaign and understood the object was not to produce a miracle cure, but to
improve their quality of life and to reduce the rate of the progression of their
disease. The self help movement has now involved over 15,000 patients and in
excess of 1.7 million sessions have been completed without a significant
incident. The concepts of pressure and a high dosage of oxygen make many doctors
uncomfortable. Indeed many doctors claim that they have never seen a chamber,
not realising that commercial aircraft are pressure chambers. Note that they are
even equipped with oxygen breathing systems and if pressurised on the ground
would make excellent MS Therapy chambers. But the concept of a dosage
of oxygen is foreign to doctors mainly because it is a
gas. They are taught at Medical School simply to specify a number of litres
a minute by a mask and do not know how much oxygen is actually retained within
the body. Imagine how puzzled
everyone would be if we specified that an MS patient in a Therapy Centre should
have 800gms of oxygen in their hour in the chamber! Doctors are also not taught
about the importance of atmospheric pressure in the delivery of oxygen and in
giving 100% oxygen in hospital they ignore the fact that the amount the patient
actually receives depends upon the barometric pressure. As everyone knows,
barometric pressure changes with the weather and so affects our lives every day.
In Scotland the barometric pressure change is actually more than 10%. In other words a critically ill patient in intensive care can
have the oxygen level they are receiving fall by 10% in a day, as barometric
pressure falls due to the arrival of a low pressure area.
A
pressure chamber can of course adjust for this variation and also allow much
more oxygen to be given, in other words, a larger dose. Unfortunately the
technology is not explained in our medical schools and once doctors qualify it
is very difficult to re educate them about fundamental concepts such as the
correct use of oxygen. Not surprisingly they are affronted when it is suggested
that they do not know how to use oxygen properly. This problem constantly spills
over into clinical hyperbaric medicine, because they also have not been taught
about hyperbaric chambers and many are frightened by the sight of the equipment.
Although the chambers used in relation to diving operate at very high pressures,
there is more pressure in household cold water pipes then in the chambers used
in the MS Therapy Centres. Because of all of these problems hyperbaric medicine
is often classified with alternative and complementary medicine.
Given
all these factors it is not difficult to see why neurologists have not been
enthusiastic about hyperbaric oxygen treatment for patients suffering from
multiple sclerosis, but there is another reason.
Using oxygen does not fit in with currently fashionable theories that
‘MS’ is due to a virus or auto immunity; a technical term for self
destruction. The basis for this popular idea is that the defences of the body
normally directed at invading bacteria attack healthy tissue. This has been the rationale for the use of immunosuppressive
drugs and so giving oxygen did not appear to fit in with these ideas. Because of
patient pressure in the 1970s the National Multiple Sclerosis Society of America
funded studies of oxygen treatment under hyperbaric conditions in the animal
model used to study aspects of MS. They
were successful. Daily sessions of oxygen under hyperbaric conditions stopped
the animals developing the disease and in other experiments oxygen treatment
improved the symptoms after the disease had developed. This led to the funding
of the superb human study already discussed. The cost of the trial ($250,000)
was provided by the National Multiple Sclerosis Society of America in New York
University which was led by the late Dr B.H. Fischer. For the first time in the
history of ‘MS’ a treatment produced improvement in chronic symptoms,
despite many years of disability. However, the subsequent trials, which were of
very poor quality, were publicised by the issue of a press release through
Associated Press in an attempt to discredit the NYU study. It should be
remembered that there is a similar range of human frailty in the medical
profession that there is in the rest of humanity.
The use of hyperbaric oxygen treatment for children with cerebral palsy
has been dealt with in the same way, with a very detailed study conducted in
McGill University published in the Lancet also being misrepresented.
However, the treatment is beneficial and Centres should encourage parents
to treat their children – suffer the little children – because it may
transform their lives. Again it must be stressed that it is the parents who are
responsible and make the decisions for their children. They should, of course,
also be involved in the treatment and be with their children in the Centre.
An Hour of Oxygen a Day ……
The principle difficulty for most doctors has been understanding how one
hour of additional oxygen a day, that is,
one hour in 24 hours, can make any
difference. When the principles are explained, most doctors can accept that if a
patient is short of oxygen and going blue then it is logical to give a large
dose of oxygen. However, now twenty years later scientists working at the
cutting edge have revealed just why an hour breathing a high level of oxygen can
have astonishing and lasting effects. Everyone knows that oxygen is essential to
life and also that if the brain is deprived of oxygen for a short time it dies.
Oxygen is used to unlock the energy contained in the molecule glucose and the
end products of metabolism are carbon dioxide and water.
This, for most doctors, is the sum total of their knowledge and without
the marketing muscle generated by the investment of billions it is difficult to
see it changing soon. Doctors are quick to point out that oxygen may be toxic by
forming free radicals, but most are not aware that without oxygen free radicals we
cannot exist. Publications in
the 1970’s detailed how oxygen is used as the key antibiotic of the body.
White blood cells, having enveloped microbes, kill them by adding an electron to
a molecule of oxygen to generate the superoxide radical. At a time when the
government has just woken up to the massive problem of bacterial resistance in
hospitals it is worth pointing out that bacteria cannot develop resistance to
this oxygen derived antibiotic. In other words giving oxygen will combat
infection. Recent American studies have shown that giving patients a higher
level of oxygen during abdominal surgery and for two hours afterwards halves the
infection rate and the rate of post operative nausea and vomiting.
It
has been known for many years that breathing more oxygen causes blood vessels to
constrict reducing blood flow. Oxygen controls blood flow by involving another
gas, one that has been thought for many years to be just a poison - nitric
oxide. But there is even more
than this to the oxygen story and it is of direct relevance to the disease
underlying ‘MS’. Even those doctors who are convinced that the auto immune
theory is correct admit that the affected areas of the brain and spinal cord in
MS are inflamed. A recent review in
the top scientific journal Nature entitled ‘Oxygen and inflammation’ has
given the latest information. Inflammation causes the level of oxygen in the
tissues to fall and this, in turn, activates a protein system – the Hypoxia
Inducible Factor proteins (HIF). One protein, HIF 1 alpha, not only controls the
migration of white blood cells into the tissues to control infection, it is also
responsible for the growth of new capillaries in wounds.
This master protein regulates over 30 genes. So giving a high level of
oxygen even has genetic consequences and so it is little wonder that one hour of
oxygen in a chamber has effects that last.
Finally patients who have used oxygen as a treatment for their MS for all
these years have been shown to be correct. It is now time for neurologists to
listen to their expert patients.
Philip
James
Professor
of Hyperbaric Medicine
The
University of Dundee
December
2003