I became
a patron of the UK charity, the Arachnoiditis Trust in early
1998, and worked as the principal member of their medical working
party until March 2003.I also joined the US based online group,
COFWA at around the same time (1998) and have had daily contact
with many arachnoiditis sufferers since then. I also work with
the New Zealand-based group ASAMS and some of my articles have
been published in their newsletter. I have also been involved
with smaller support groups, including the Cauda Equina Syndrome
Support Group (CESSG) for whom I wrote a piece on the cauda
equina syndrome; CIAASA, a group in Australia, and more recently,
a new group for arachnoiditis sufferers, based in Liverpool,
UK. (I am currently patron of COFWA, ASAMS and The Arachnoiditis
Support Group, Knowsley.)
I have given
talks to the Trust at Arachnoiditis Trust AGMs, as well as to
a more local sub-group. I have also spoken at a conference of
the Environmental Assistance in London("Toxic Aspects of
Arachnoiditis" 1999) and the British Chiropractic Association
in October 1999.("The role of the Chiropractor in recognising
the Arachnoiditis Syndrome"); “Iophendylate-induced
Adhesive Arachnoiditis”, Derriford Hospital February 2003.
“Assessment of Chronic Pain, Derriford Hospital”
March 2004.
Articles
I write tend to be overviews of topics presented to aid sufferers
of arachnoiditis and their doctors in their understanding of
this complex condition. As a rule, I restrict my personal opinion
to comments that are clearly indicated as purely my own view.
In general, I aim to provide a balanced overview with fully
referenced information.
I have published
numerous articles on Arachnoiditis including a handbook for
GPs, and article for the alternative health magazine In Balance:
entitled "Spiders in Your Spine?"), Stenosis, Central
Pain, Headaches in Arachnoiditis, Neurological Symptoms in Arachnoiditis
etc.
Other articles
include "The Scourge of Unrelieved Chronic Pain" and
a series on various palliative treatments including narcotics
and adjunctive medication. I also wrote a series about the psychological
aspects of arachnoiditis, with specific articles on insomnia,
depression etc.
I have also
written commentaries on other papers such as the 2001 New Zealand
report on Arachnoiditis by Peter Day. My commentary was published
by Dr. Burton on his website, www.burtonreport.com
In 2001, I took part in a video on arachnoiditis called “Arachnoiditis:
Fighting Back” which also featured interviews with experts
such as Dr. Burton and Dr. Antonio Aldrete.
I wrote
a detailed review of the history of Iophendylate myelograms
in 2002, with an accompanying presentation on Iophendylate-induced
adhesive arachnoiditis. I have also written about other iatrogenic
causes of the condition.
My 1999
survey of 317 people with arachnoiditis was published on the
Internet by Dr. Charles Burton, of the Institute of Low Back
and Neck Care, Minnesota, an expert neurosurgeon who has wide
clinical experience of treating patients with arachnoiditis
with whom I have regularly corresponded for a number of years.
I have also run a small survey of treatments being used for
various conditions that cause chronic pain and the results have
been passed on to the groups who participated, and surveys on
headaches and thyroid disorders in arachnoiditis.
I have also
had an article published in The Western Morning News, (a newspaper
distributed in South-West UK) in September 2002, on Holistic
medicine.
I have just
completed an extensive overview on Adhesive Arachnoiditis which
is published online on websites of arachnoiditis support groups.
(Finished October 2003).
I have also
given radio interviews in UK( for You and Yours Radio 4) and
Australia.
I liaise
frequently with other doctors who may be neurologists, GPs or
pain specialists, both in the UK and abroad.
I regularly
contact members of the UK government concerning issues to do
with arachnoiditis.(e. g. Memorandum to the Health Select Committee
re: Adverse Clinical Incidents June 1999; meeting with Lord
Hunt of the Department of Health April 2000; further meeting
with DOH representative December 2000) Proposal for Community
Pain Treatment Teams sent to NSF Long Term Conditions December
2002.
I attend
conferences on pain management issues in order to keep up to
date with developments. I attended the Royal Society of Medicine’s
Pain Symposium in 2000, the Pain Society’s Pain Awareness
week in November 2002 and Pain Seminars at St. Thomas’
Hospital, London, on November 2002 and Spring 2003. The latter
two pertained to pain management programmes and Primary care
issues.
I receive
mail from around the world every day and do what little I can
to pass on balanced information and support. I do not, however,
ever offer individual advice as this would be highly unethical.
I always strive to make this point entirely clear to those I
write to.
As regards
my personal experience as a patient: I have suffered chronic
pain for over 20 years, since my mid-teens. I feel that this
is of great help in furthering my understanding of the suffering
of others in chronic pain and this can hopefully impact positively
on any help I may offer. |