London was the venue chosen to host ‘Rivers of Fire – The Untold Story of Neuropathic Pain’, a press briefing for medical journalists.

As a leading provider of essential support and education for people affected by peripheral neuropathy (PN) and neuropathic pain (NeP), this briefing gave the Trust the opportunity to raise awareness of PN and NeP amongst the country’s top medical journalists.

Targeting the medical press in turn raises awareness amongst doctors, nurses, and other healthcare practitioners: offering them solutions for sharing both the management and the burden of PN and NeP across primary and secondary care. As a result of this day, we are delighted to see that peripheral neuropathy and neuropathic pain are already receiving more and more coverage in both the medical and consumer press.

One such article, for example, recently appeared in Scrip World Pharmaceutical News. As the name suggests, this is circulated not only to the UK but to subscribers worldwide.

‘Rivers of Fire’ sported an impressive list of speakers. Some of the country’s leading diabetes, neurology and pain management specialists were eager to support the Trust in its mission to tell the story.

The first presentation of the day saw Andrew Keen give a powerful insight into the real impact this level of suffering has on patients’ lives. The common story of misdiagnosis and long waiting periods for referral to pain clinics explained how easily this can lead to years of private, hidden suffering. Journalists were then able to understand just how significant this condition is, and how even a modest increase in the awareness of PN and NeP amongst healthcare professionals could go a long way to alleviating the problem.

Professor Tony Dickenson, a professor of neuropharmacology at University College London followed by explaining our growing understanding of NeP. Initially, an outline of the size of the problem was given:-

• There are two billion chronic pain days world wide.
• Chronic pain affects two thirds of all people over sixty-five years of age.
• There are over half a million sufferers of neuropathic pain in the UK today.

Professor Dickenson explained how neuropathic pain is now understood to differ considerably from normal (‘nociceptive’) pain. A clear description of the key difference between neuropathic and nociceptive pain was given by discussing how nociceptive pain plays an important role in development and survival. ‘The animal response to pain is to withdraw, and even the lowest forms of life soon learn to avoid stimuli that lead to painful experiences. By contrast, neuropathic pain seems completely devoid of such ‘useful’ consequences’. He then went on to explain the science behind the mechanisms of pain, and further differences between the two major types of pain.

Dr Steve Allen, a consultant anaesthetist at the Royal Berkshire Hospital, and one of the Medical Advisors to the Neuropathy Trust, led the final session before lunch. Dr Allen ran through past, present and future treatments for NeP. He opened by making it clear that for many NeP sufferers, there is no total cure, and how traditional pain relief is usually not the solution. Neuropathic pain has a different aetiology, and therefore requires specific NeP treatment strategies.

Dr Allen discussed that although we are some way from fully understanding exactly how NeP treatments work, we now know that for many sufferers, tricyclic antidepressants, anti-epileptics and local/topical treatments can sometimes prove effective. The future is also more promising, with new anti-epileptic drugs and cannabinoids likely to be available in forthcoming years.

The briefing resumed after lunch with Steve Allen discussing the management of neuropathic pain in the UK today. He outlined the importance of understanding that neuropathic pain is not one single disease process and how the causes range from shingles to diabetes. As a diverse selection of healthcare providers are in contact with neuropathy patients, increased education is a critical factor in providing improved care. All clinicians should know enough about neuropathy to actively look for a neuropathic element in any intractable, chronic pain case.

Dr Allen also stated ‘patients with chronic pain use health services five times more than the general population’ and that ‘approximately 30% of patients seen in pain clinics have a neuropathic element to their pain’. Dr Allen also highlighted how important patient support groups are in supplementing a complete, effective treatment strategy.

Dr Nigel Higson, a GP from Hove and Chairman of the Primary Care Virology Group, gave the next presentation outlining the role for GPs. The aim for GPs is not to provide detailed education on all aspects of all neuropathic conditions. However, as GPs are often the first point of contact for sufferers, we should ensure that they learn to suspect a neuropathic element in all chronic intractable pain cases. Post herpetic neuralgia, trigeminal neuralgia and in some cases painful diabetic neuropathy can often be effectively treated in primary care. However, the key message is to refer early to a pain clinic when neuropathic pain is suspected.

Dr Higson also discussed the burden to primary care when treatment is delayed. Untreated chronic pain can lead to immobility, insomnia, anorexia, anxiety and often depression. This in turn is a further strain not only on the patient, but also on the healthcare provider.

As the prevalence of diabetes is predicted to increase dramatically over future years, so too is the prevalence of painful diabetic neuropathy. Dr Solomon Tesfaye, a leading consultant diabetologist from the Royal Hallamshire Hospital, Sheffield explained how approximately 30% of diabetic patients develop peripheral neuropathy, therefore nearly one million people with diabetes may be affected by PN by the year 2010.

Diabetic patients should be encouraged to help themselves by adopting a comprehensive foot care routine, and rapidly reporting any signs of numbness, tingling or pain in their hands and/or feet. Poor glycaemic control over many years can lead to a host of neuropathic conditions, of which painful diabetic neuropathy (PDN) is one of the most common. Dr Tesfaye explained, ‘Interestingly, whilst tight glycaemic control may help prevent PDN, it will often not relieve it once established. When PDN is established, an active approach to pain management is required, in addition to improved glycaemic control’.

Dr Tesfaye went on to mention exciting new finds associated with diabetic neuropathy, which he and his team at Sheffield are researching: Circulatory abnormalities in connection with peripheral nerve blood supply and also changes in the internal space of the spinal column have been discovered. Further investigation of these finds will hopefully lead to greater understanding of the true mechanisms of diabetic neuropathy. It is everyone’s wish that this may lead us one step nearer to the future possibility of being able to break the disease cycle and offer a true hope of effective treatments for this disease.

The Trust’s Principal Advisor, Dr Simon J Ellis, in addition to chairing this important event also gave the final presentation of the day. Dr Ellis is a consultant neurologist at the North Staffordshire Royal Infirmary and has been involved with the Trust since it was formed in 1998. He was therefore in an ideal position to discuss the reason for being and recent accomplishments of the Neuropathy Trust.

Dr Ellis explained how the feelings of isolation and depression often felt by PN and NeP sufferers should not be underestimated, and how the Trust goes a long way in helping people come to terms with their condition simply by being there.

Always eloquent in his advocacy for patients, Dr Ellis also urged the journalists to take the untold story of neuropathic pain to their readers, which in turn will have a significant impact on awareness amongst clinicians and patients alike. This will hopefully encourage better and more sympathetic treatments for all those affected by these devastating conditions.

Many weeks of intensive preparation were needed to ensure the success of this important initiative including, for example, almost two hundred written communications prior to this event. The combined efforts of a few dedicated people showed just what it is possible to achieve. On behalf of the subscribers and supporters of the Neuropathy Trust, our once ‘Silent Army’, we give our grateful thanks to all those individuals who put so much effort into this successful day.

The Neuropathy Trust would also like to sincerely thank Pfizer Limited for the support and funding given to ‘Rivers of Fire’: This Company’s sensitive involvement, and their understanding of the needs of neuropathy patients, made this presentation possible and went a long way to ensuring its success.