Understanding Neuropathic Pain

Credits:  The Leeds Pallium Research Group. This  film was produced by Prof José Closs, Dr Michelle Briggs and Mrs Kath Marczewski.

Light At The End Of A Very Long Tunnel

Chief Executive and Founder of the Neuropathy Trust, Andrew Keen, describes how and why the Neuropathy Trust came into being.

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Pain In The Spotlight

Chief Medical Officer Sir Liam Donaldson, in his Annual Report to Parliament, has drawn attention to the extent to which long-lasting pain blights the daily lives of millions of people.  He has underlined the need to increase education and training in relation to chronic pain amongst health professionals and also given attention to the desire to improve the Health Service’s present treatment provision.

Although the media in the UK seems to have largely ignored this significant part of Sir Liam’s report – focusing instead upon alcohol consumption, obesity and knife crime – the report does figure as a significant advance in the slow but sure movement towards improving the treatment of pain.

Neuropathy Trust Survey

It is worth looking back a few years to the very comprehensive survey that over 600 of our regular readers contributed to, and which we displayed at the Pain Society’s annual meeting that same year.

Those of our readers who took the time to complete our innovative survey might draw some satisfaction from realising that they have contributed, at an early stage, to the now growing calls for changes in the recognition and treatment of pain.  Many other problems which surround people affected by chronic pain, all too familiar with many of our readers, are also highlighted in the report.  Just some of the report’s key points are shown here.

• Each year over 5 million people in the United Kingdom develop chronic pain, but only two-thirds will recover.  Much more needs to be done to improve outcomes for patients.

• Chronic pain has a major impact on people’s lives, causing sleeplessness and depression and interfering with normal physical and social functioning.

• All age groups are affected: a quarter of school-age children reported pain (on average lasting more than three years), while most elderly residents of nursing homes experienced frequent moderate to severe pain.

• The limited number of specialist pain clinics around the country are inundated with referrals, and only 14% of people with pain have seen a pain specialist.  Systems and infrastructure are not adequate to meet need or demand.

• Better coordination of services and services designed around the patient’s needs are essential.

Non-Drug Treatments

“Over the years various drugs have been tried but still the pain is excruciating – especially when sitting or lying down.  I have this unbearable pain in my feet and toes.  It is becoming more than I can bear, because there is no respite night and day.  I must confess, my thoughts are sometimes suicidal – cowardly maybe – but until some help is found for this condition I have to drug myself through my days and nights.  Little is written on non-pharmaceutical interventions for neuropathic pain.  I live in hope that you can help people like myself.”

(N.T. member – Nora (now sadly deceased)

Although by no means extensive, the report does list some non-drug treatments.

”Transcutaneous electrical nerve stimulator (TENS) machines work in a number of ways.  Simply put, they work by using electrical energy to directly alleviate nerves in the spinal cord.  In the same way in which pain is helped by rubbing a painful body part, this competes with the ‘pain signal’ and blocks it, as explained by the ‘Gate theory’ proposed in the 1960s.  However, more complex mechanisms are likely to exist as well.  Whatever the mechanism, TENS treatment can have a significant effect on many types of pain if used properly, often in conjunction with other treatment options.

Acupuncture may work in a number of ways.  It may have a counter-irritant effect as well as encouraging the release of the body’s own painkillers (endorphins).  Many other rationales have been proposed, and there is much controversy about acupuncture.  However, there is no doubt that some patients report significant benefit for some pain problems.

Maintaining or regaining a degree of physical function is widely accepted as crucial to reducing the effects of pain.  Physical therapy and/or appropriate rehabilitation programmes both treat pain directly and give patients the knowledge and skills to maintain their own health and function.  This may also help to maintain psychological well-being.

Many localities now run physical activity and leisure services or equivalent schemes, some of which are targeted at people with complex pain.  These aim to reintroduce and maintain good physical function and health.  Health trainers can improve patients’ confidence in doing things despite their pain.  This also reduces the risks of heart disease and obesity.

Cognitive behavioural therapy* can help patients to break the cycle of pain, fear, immobility and disuse that leads to ever-worsening pain.  This approach also helps to develop self-management and coping strategies, and to improve social and physical functioning, even where the underlying pain cannot be improved significantly.  The newer, third-wave therapies such as mindfulness and acceptance-based therapies have proved to be very useful…”

*Cognitive behavioural therapy is featured in the Trust’s ‘Quality of Life’ booklet, which was written by Dr Clare Daniel.

Integrated Approach

The report recognises the fact that people affected by chronic pain have to also cope with the various aspects of the impact which it has upon other areas of their lives.  It recommends that “…aspects of care are integrated and joined up, rather than instigated sequentially or in isolation.”  Quite significantly, it also says that “Patients report that being listened to and given choices over treatment are just as important as the therapies themselves.”

A number of practical actions have been recommended including:

• Training in chronic pain included in the curricula for all healthcare professionals

• For patients in hospital, a pain score should become part of the vital signs that are monitored routinely

• The feasibility of a national network of rapid access pain clinics providing early assessment and treatment should be explored.

Conclusion

The report should be welcomed by everyone who has an interest in the proper diagnosis and treatment of pain.  For years there has been a frustration amongst people affected by chronic pain and those people called upon to offer treatment.  Now, thanks to the many individuals who have dedicated a greater part of their lives to research and clinical treatment for pain, and contributions from those affected by it, there is a real chance of tangible improvements.  Sir Liam Donaldson, as Chief Medical Officer, is known for his tenacity of purpose.  Although there is still a long way to go before the suggested improvements arrive in place, it is unlikely now that the present momentum for change will in any way lessen.  Whatever the future difficulties, we truly welcome all of the initiatives proposed in the report.

Doctors Receive Award

photo: Dr Marios Hadjivassiliou, Jean Walker, Joyce Keen and Professor Solomon Tesfaye

On Thursday 19th March 2009 we attended at the Royal Hallamshire Hospital, Sheffield, to present the Dawn Ind Memorial Chalice to two very special individuals.

It always gives us great pleasure to present the award but this day was a rather special occasion for the Trust, as it was a joint presentation. It was also attended by one of our very early members, Jean Walker, from Sheffield.

The names of Professor Solomon Tesfaye [Diabetologist] and Dr Marios Hadjivassiliou [Neurologist], both based at the Royal Hallamshire Hospital, will already be familiar with most of our readers, as they have both been ardent supporters of the Trust for many years.

Andrew Keen said “Professor Tesfaye and Dr Hadjivassilou have greatly earned this award – they have supported us from day one with both professionalism and humanism and have helped to improve the lives of countless patients through empathy, treatment and their ongoing research efforts.”

Professor Tesfaye, who has an international reputation as key opinion leader in Diabetic Neuropathy, replied “We are honoured to receive this recognition from the Trust. Neuropathy can seriously compromise a patient’s quality of life as the pain can adversely affect not only work and social life but also mood, the ability to function and to sleep and it can often lead to depression.”

Dr Marios Hadjivassilou said “I am delighted to receive this award. Peripheral Neuropathy results from damage to nerve endings and can cause intense pain, usually in the legs and feet. It can also cause weakness and loss of sensation and the end result is a major loss of quality of life of affected patients, so to be acknowledged for making a difference to these patients is a great honour.”

Jean Walker, who attended the hand-over ceremony said “I am in constant pain – before I came to see Professor Tesfaye I felt like no one understood what I was going through and things could never improve. Professor Tesfaye and Dr Hadjivassilou have given me, and countless other patients, hope for the future”

New readers may care to know that this silver chalice was purchased as a result of kind donations from family and friends of one of our early members – Dawn Louise Ind. Dawn was just 28 years and suffered from a form of neuropathy called CIDP. She passed away in October 2000 as a result of pneumonia.