Neuropathy Trust: Peripheral Neuropathy and Neuropathic Pain

The Neuropathy Trust is a worldwide Charity (1071228) that was founded in 1998 by Andrew Keen to provide a lifeline to people affected by Peripheral Neuropathy (PN) and Neuropathic Pain (NeP).

It is the primary function of the Trust to ensure, irrespective of the cause of the peripheral neuropathy or neuropathic pain (whether known or otherwise) that patients, family, carers and health care providers receive the highest possible level of information and support.

The Neuropathy Trust is independent of any government, political ideology, economic interest or religion.

From personal experience, there appeared to be a need for improvements in information sources regarding peripheral neuropathy and neuropathic pain. Similarly, there was a need for some kind of effective support mechanism to help people during the sometimes-lengthy periods of time between medical consultations. Although this need was first observed from the viewpoint of a patient with a so-called ‘Cryptogenic’ or ‘Idiopathic’ neuropathy, it soon became clear that shortfalls in these areas often apply to neuropathies with known causes.

Following a year or so acting as a then relatively small support group, it became apparent that the need for improved information and support was far greater than anticipated and, as such, on August 1st 1998 the Neuropathy Trust registered as an approved Charitable Trust (No. 1071228) with the Charity Commission.

Like many other organisations, the Neuropathy Trust is guided by a mission, which explains what it does. It helps the Trust to define its work and focus its energies to make the organisation more effective.

The Neuropathy Trust focuses its energies on three key areas, those being;

1. Awareness; and
2. Communication; and
3. Education

The Neuropathy Trust is committed to a better future for people affected by peripheral neuropathy and neuropathic pain. Through education and communication to patients and healthcare professionals, the aim of the Trust is to raise awareness of these conditions and to provide a lifeline to all those affected.

Provides a forum for health-care-workers of all groups to pool their resources in promotion of good quality care for all patients with neuropathy and neuropathic pain. Its aims are to raise the profile of Peripheral Neuropathy (PN) and Neuropathic Pain (NP) so that more doctors, nurses, physiotherapists, occupational therapists and other healthcare workers will seek to make this their special area of interest.

Encourages research into the causes and treatments of peripheral neuropathy and neuropathic pain and raises awareness amongst the general public and politicians of the need for special accommodations and facilities for people affected by these conditions.

Believes that patients have a right be informed about all available treatment options in relation to the management of their illness including, for example, being told of the potential side-effects / risk factors; so that they are in a position to make educated and informed choices.

1. The Neuropathy Trust’s mission is focused, but it also develops continuously.

2. The categories of people that the Trust represents, the demands that the Trust makes on their behalf and the methods it uses in its work change as it responds to the changing world.

3. The Neuropathy Trust is determined to be seen as the best information provider to both patients and the medical profession.

The Trust would estimate that since its formation in August 1998 it has provided direct assistance to somewhere in the region of 120,000 people.

The Trust has developed, via its web site, a considerable presence on the Internet. This facility has attracted in excess of 1 million unique visitors since October 1999. The current daily hit rate has now reached 6,000+/-, and continues to climb.

The Trust currently handles in the region of 200 written enquiries per week. During busy periods, e.g. when an article is published in a national newspaper or a glossy magazine, it is not unusual for the Trust to receive in excess of 750 enquiries per week.

Telephone Enquiries

The Trust’s main national support line currently handles in the region of 70 – 100 telephone enquiries per week.

The Trust has established a regional ‘local contact network’. This network now spans the United Kingdom and enables it to put those affected by the condition in touch with other people who find themselves in a similar situation, and who also live in their own particular region. At present the Trust has sixty (60) volunteers on the scheme.

‘Project 18’ Patient Survey
[Epidemiological Data, Drug Efficacy, Side Effect Profile etc.]

For the past 4 years the Trust has been asking people affected by Peripheral Neuropathy and Neuropathic Pain to complete a questionnaire entitled ‘Project 18’. The Trust has received somewhere in the region of 2000 completed questionnaires to date. Although largely epidemiological in nature, this data has provided the Trust with a valuable and unique insight into the current situation for people affected by these particular neuropathic conditions.

It is hoped that this data, once analysed, will eventually provide a substantial information resource for people with an interest in this area of the neurosciences, i.e. patients, health care providers, and industry alike.

Thanks to an unrestricted educational grant provided by Ford Motor Company Limited the Trust has written & published a booklet entitled ‘Peripheral Neuropathy under the Spotlight’. This, along with other supporting documentation, has been distributed to every major neurological unit within the United Kingdom.

Thanks to an unrestricted educational grant provided by Pfizer Limited a second edition of this booklet entitled ‘Peripheral Neuropathy & Neuropathic Pain under the Spotlight’ has been published.

This booklet has been distributed to General Practitioners / other primary health care providers, and is currently issued to subscribers, both at home and overseas.

Thanks to an unrestricted educational grant provided by Pfizer Limited the Trust has written & published a booklet entitled ‘Diabetic Neuropathy under the Spotlight’. The Trust was delighted to be able to elicit the help of Professor Andrew Boulton of Manchester in the production of this educational booklet covering the topic of diabetic neuropathy. Almost 2000 copies of this booklet have been distributed amongst diabetologists and diabetic nurses throughout the United Kingdom.

Thanks to an unrestricted educational grant provided by Pfizer Limited the Trust has written & published a booklet entitled ‘Post Herpetic Neuralgia under the Spotlight’. The Trust was delighted to be able to elicit the help of Dr. Andrew Rice of Imperial College (London) in the production of this educational booklet covering the topic of post herpetic neuralgia. This publication has been distributed to over 1000 GP Surgeries throughout the UK.

Information leaflets relating to peripheral neuropathy and neuropathic pain have also been produced. These have been distributed to GP Surgeries within the United Kingdom.

A second leaflet addressing diabetic neuropathy specifically has been produced and has been distributed to diabetic clinics throughout the UK.

A third leaflet addressing post herpetic neuralgia has been produced and has been distributed to pain management clinics and GP surgeries within the United Kingdom.

Posters

Posters relating to peripheral neuropathy and neuropathic pain have also been produced. The Trust has distributed these to GP’s surgeries within the United Kingdom.

The peripheral neuropathy posters are also issued to new subscribers along with their information pack and the Trust actively encourages them to display them in their local clinics/surgeries. Again a second A3 poster utilising striking imagery has been produced specifically addressing diabetic neuropathy. 200 of these have been placed in diabetic clinics.

The Trust publishes its own journal entitled ‘Relay’. This publication is distributed three times per annum to subscribers both at home, and overseas.

The United Kingdom and Ireland, The United States of America, Canada, Australia, Malaysia, Philippines, South Africa, Denmark, Portugal, Spain, Italy, Belgium, France, Sweden, Israel, Germany, and Brazil.

Complimentary issues of the journal are currently distributed to UK based Neurologists [Including the Association of British Neurologists], Pain Management Consultants, The Association of British Pharmaceutical Industries [ABPI], and other health care providers upon request. The journal is also freely distributed to other voluntary [non-profit-making] organisations with an interest in this area of the neurosciences.

Feature articles/letters pertaining to the Neuropathy Trust have been published in the Nursing Standard, Ford Magazine, The Daily Telegraph, The Daily Mail, Bella Magazine, The People’s Friend, Woman’s Own, Scrip Pharmaceutical News, Human Givens, and Advances in Clinical Neuroscience & Rehabilitation, to name but a few. The Trust also positively encourages its members to write to their local newspapers to help to increase awareness.

Tuesday the 27th of August 2002 marked a big day for the Neuropathy Trust: 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 (NP), this briefing gave the Trust the opportunity to raise awareness of PN and NP among 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 NP across primary and secondary care. As a result of this day, the Trust is delighted to see that peripheral neuropathy and neuropathic pain are already receiving more and more coverage in both the medical and consumer press.

Participants: Andrew Keen, Dr Simon J Ellis, Professor Anthony H Dickenson, Dr. Solomon Tesfaye, Dr. Steve Allen, and Dr. Nigel Higson.

Who's Who

Mr. Andrew Keen
Chief Executive Officer and Founder
The Neuropathy Trust, PO Box 26, Nantwich, Cheshire,
CW5 5FP, United Kingdom

Volunteers
The Trust has 60+ volunteers operating throughout the United Kingdom and Ireland

Pharmacological Advisor
Dr. Paul Rees
Project Leader
Neurology Project Management Group, GSK (UK)

Primary Care Advisor
Dr. Nigel Higson
General Medical Practitioner (Brighton, East Sussex)

Biographical Note: Nigel is a full time GP with interests in virology, diabetes and stroke from which he has developed an interest in the diagnosis and management of neuropathic pain. He undertakes a considerable amount of freelance writing and broadcasting in these areas and is involved with an education programme to assist doctors and care teams in diagnosing and managing neuropathic pain.

Advisory Council

The ‘Advisory Council’ was established in order to bring together a group of dedicated and like-minded individuals who come from various disciplines but who share a common interest in peripheral neuropathy and neuropathic pain.

Dr. Simon J Ellis
Consultant Neurologist (Stoke-on-Trent, UK)

Biographical Note: Simon is a Consultant Neurologist at the North Staffordshire Hospital. He is visiting Professor in Neurosciences at Staffordshire University. He trained in neurology at Mount Sinai, New York and the Radcliffe Infirmary in Oxford. Dr. Ellis has been working with the Neuropathy Trust since it was established in 1998. Dr. Ellis is also the Director of Clinical Neurosciences at the North Staffordshire Royal Infirmary.

Dr. Solomon Tesfaye
Consultant Physician and Diabetologist (Sheffield, UK)

Biographical Note: Solomon possesses an international reputation as a key opinion leader in diabetic neuropathy and many years of experience in conducting clinical research in diabetic neuropathy. Dr Tesfaye’s current research projects include imaging of the central nervous system in diabetic neuropathy and the pathophysiology of neuropathic pain and the genetics of diabetic complications.

Dr. Andrew SC Rice
Senior Lecturer in Pain Research (London, UK)

Biographical Note: Andrew is a Senior Clinical Lecture in Pain Research at Imperial College London and a member of the London Pain Consortium. He works at the translational interface between clinical medicine and laboratory research. His research interests include the mechanisms of neuropathic pain, identification of novel mechanism for analgesic drugs in the laboratory and clinical trials in neuropathic pain patients. He is also an Honorary Consultant in Chronic Pain Management at the Chelsea and Westminster Hospital, London and holds a weekly clinic for neuropathic pain patients.

Professor Anthony H Dickenson
Professor of Pharmacology (London, UK)

Biographical Note: Tony has a special interest in the scientific basis behind the mechanisms and treatments of neuropathic pain. He is also particularly interested in further researching the clues to understanding changes in the nervous system.

Professor Praveen Anand
Professor of Clinical Neurology (London, UK)

Biographical Note: Praveen is the Head of the Peripheral Neuropathy Unit based at the Hammersmith Hospital, Imperial College London. The Unit focuses on molecular mechanisms in human neuropathies, with the aim of improving neuronal survival and regeneration, and preventing or treating chronic neuropathic pain. Collaborations with biotechnology and pharmaceutical companies are directed to bridge the gap between pre-clinical developments and successful clinical applications. The Unit has conducted 5 clinical trials for neuropathy in recent years.

Dr. Steve Allen
Consultant Anaesthetist (Reading, UK)

Biographical Note: Steve founded the pain clinic in Reading 21 years ago, when appointed as a consultant. His interest in neuropathic pain began 15 years ago with involvement in the treatment of post herpetic neuralgia.

Dr. Marios Hadjivassiliou
Consultant Neurologist (Sheffield, UK)

Biographical Note: Marios is an Honorary Clinical Senior Lecturer at The University of Sheffield and a Consultant Neurologist at Sheffield Teaching Hospitals NHS trust and Chesterfield Royal Hospital. His MD thesis was on the neurological manifestations of gluten sensitivity. His current research interests include the neurological manifestations of systemic diseases with an emphasis on gluten sensitivity as well as the aetiology of "idiopathic" ataxias and neuropathies. He runs a weekly gluten sensitivity/neurology clinic as well as an ataxia clinic.

Dr. Kerry Booker
Consultant Clinical Psychologist (Manchester, UK)

Biographical Note: Following an initial career as Research Fellow in Psychological aspects of Chronic Medical Conditions and subsequently as a Clinical Research Fellow for the Imperial Cancer Research Fund in Edinburgh, Kerry moved to Salford to develop a clinical service for chronic pain sufferers. He has worked as a full-time clinician in chronic pain management for the past 12 years. The Manchester & Salford Pain Centre is now one of the largest inter-disciplinary pain centres in Britain. Kerry leads research projects in Psychoneuroimmunology, return to work projects for pain sufferers and treatment outcome of group pain management programmes.

Clare originally trained as a nurse but then changed career and trained as a Clinical Psychologist. Since qualifying she has combined her interest in health and psychology and has worked with people who have chronic pain. She is now a Consultant Clinical Psychologist in London and is developing the clinical psychology service within a multidisciplinary pain team. The aim of the service is to help people with pain improve their quality of life. Clare is also a Research Associate at Imperial College London. Her current research interests include understanding the impact of neuropathic pain and peripheral neuropathy on people’s quality of life.

Government Document and Declaration of Trust

This charitable trust constituted by this deed ("the charity") and its property ("the trust fund") shall be administered and managed by the trustees under the name of The Neuropathy Trust or by such other name as the trustees from time to time decide with the approval of the Charity Commissioners of England and Wales ("the Commissioners").

The trustees shall hold trust funds and its income upon trust to apply them for the following objects ("the objects")

The Neuropathy Trust will promote the relief of persons suffering from Peripheral Neuropathy and advance the education of the public in all matters relating to the Peripheral Nervous System.

In furtherance of the objects but not otherwise the trustees may exercise any of the following powers:

(I) to raise funds and invite and receive contributions: Provided that in raising funds the trustees shall not undertake any substantial permanent trading activity and shall conform to any relevant statutory regulations.

(ii) to buy, take on lease or in exchange, hire or otherwise acquire any property necessary for the achievement of the objects and to maintain and equip it for use;

(iii) subject to any consents required by law to sell, lease or otherwise dispose of all or any part of the property comprised in the trust fund;

(iv) to co-operate with other charities, voluntary bodies and statutory authorities operating in furtherance of the objects or of similar charitable purpose and to exchange information and advice with them:

(v) to establish or support any charitable trusts, associations or institutions formed for the objects or any of them;

(vi) to appoint and constitute such advisory committees as the trustees may think fit;

(vii) to employ such staff as are necessary for the proper pursuit of the objects and to pay honoraria and reimburse expenses to any of the Charity Trustees, Auditor or counsellors, or to any other person in respect of the provision of specific professional services undertaken on the Charities behalf.

(viii) to permit any investments comprised in the trust fund to be held in the name of any clearing bank, any trust corporation or any stockbroking company which is a member of the Stock Exchange (or any subsidiary of such a stockbroking company) as nominee for the trustees and to pay any such nominee reasonable and proper remuneration for acting as such;

(ix) to delegate to any one or more of the trustees the transaction of any business or the performance of any act required to be transacted or performed in the execution of the trust of the charity and which is within the professional or business competence of such trustee or trustees: Provided that the trustees acting shall exercise reasonable supervision over any trustee or trustees acting on their behalf under this provision and shall ensure that all their acts and proceedings are fully and promptly reported to them;

(x) to procure to be written, and print, publish, issue and circulate gratuitously or otherwise any reports or periodicals, books, pamphlets, leaflets or other documents;

(xi) to arrange and provide for or join in arranging and providing for the holding of activities, meetings, lectures and classes, and in particular to establish a network of local contacts and to promote the formation of local branches both within the United Kingdom and overseas;

(xii) to promote, encourage or undertake organised research, provided that the results of any research funded by the Charity shall be published;

(xii) to do all such lawful things as are necessary for the achievement of the objects.

(1) There shall be at least three trustees. Every future trustee shall be appointed by resolution of the trustees passed at a special meeting called under clause K.

(2) In selecting persons to be appointed as trustees, the trustees shall take into account the benefits of appointing a person who is able by virtue of his or her personal or professional qualifications to make a contribution to the pursuit of the objects or the management of the Charity.

(3) When any new trustee is appointed the trustees shall ensure that any land belonging to the Charity which is not vested or about to be vested in the Official Custodian of Charities or in a custodian trust and all property of the Charity which is not vested or about to be vested in the Official Custodian for Charities, a custodian trustee or a nominee is effectively vested in the persons who are the trustees following such appointment.

(4) If for any reason trustees cannot be appointed in accordance with the foregoing positions the statutory power of appointing new or additional trustees shall be execrable.

(b) in circumstances such that, had he or she already been a trustee, he or she would have been disqualified from office under the provisions of the following clause.

(2) No person shall be entitled to act as a trustee whether on the first or on any subsequent entry into office until after signing in the minute book of the trustees a declaration of acceptance and willingness to act in the trusts of the Charity.

(1) is disqualified from acting as a trustee by virtue of section 45 of the Charities Act 1992 (or any statutory re-enactment or modification of that provision);

(2) becomes incapable by reason of mental disorder, illness or injury of managing and administering his or her own affairs;

(3) is absent without the permission of the trustees from all their meetings held within a period of six months and the trustees resolve that his or her office be vacated; or

(4) notifies to the trustees a wish to resign (but only if at least two trustees will remain in office when the notice of resignation is to take effect).

If a vacancy occurs the trustees shall note the fact in their minute book at their next meeting. Any eligible trustee may be re-appointed. So long as there shall be fewer than two trustees none of the powers or discretion’s hereby or by law vested in the trustees shall be exercisable except for the purpose of appointing a new trustee or trustees.

The first meeting of the trustees shall be called by the Chairperson or if no meeting has been called within three months after the date of this deed by any two of the trustees. Subsequent meetings shall be arranged by the trustees at their meetings or may be called at any time by the chairperson or any two trustees upon not less than ten days' notice being given to the other trustees.

The trustees at their first ordinary meeting in each year shall elect one of their number to be chairperson of their meetings until the commencement of the first ordinary meeting the following year. The chairperson shall always be eligible for re-selection. If the chairperson is not present within ten minutes after the time appointed for holding a meeting or there is no chairperson the trustees present shall choose one of their number to be chairperson of the meeting.

A special meeting may be called at any time by the chairperson or any two trustees upon not less than four days' notice being given to the other trustees of the matters to be discussed, but if the matters include an appointment of a trustee or a proposal to amend any of the trusts of this deed then upon not less then 21 days' notice being so given. A special meeting may be called to take place immediately after or before an ordinary meeting.

There shall be a quorum when at least one third of the number of trustees for the time being or two trustees, whichever is the greater, are present at a meeting.

Every matter shall be determined by a majority of the trustees present voting on the question. The chairperson of the meeting shall have a casting vote whether he or she has or has not voted previously on the same question but no trustee in any other circumstance shall give more than one vote.

The trustees shall keep minutes, in books kept for the purpose, of the proceedings at their meetings.

The trustees shall comply with their obligations under the Charities Act 1992 (or any statutory re-enactment or modification of that Act) with regard to:

(3) the auditing or independent examination of the statements of account of the Charity; and

(4) the transmission of the statements of account of the Charity to the Commissioners.

The trustees shall comply with their obligations under the Charities Act 1992 (or any statutory re-enactment or modification of that Act) with regard to the preparation of an annual report and its transmission to the Commissioners.

Within the limits of this deed the trustees shall have full power from time to time to make regulations for the management of the Charity and for the conducting of their business, including the calling of meetings, the deposit of money at a bank and the custody of documents.

Any bank account in which any part of the fund is deposited shall be operated by the trustees and shall be held in the name of the Charity. All cheques and orders for the payment of money from such account shall be signed by at least two trustees.

(i) Subject to the provisions of sub-clause (ii) listed below; not trustee shall acquire any interest in property belonging to the Charity (otherwise than as a a trustee for the Charity) or receive renumeration or be interested (otherwise than as a trustee) in any contract entered into by the trustees.

(ii) Any trustee engaged in any profession may charge and be payed all the usual professional charges for business done by him or her or his firm when instructed by the other trustees to act in a professional capacity on behalf of the Charity: Provided that at no time shall a majority of the trustees benefit under this provision and that a trustee shall withdraw from any meeting of the trustees at which his or her own instruction or remuneration, or that of his or her firm, is under discussion.

Subject to any consents which may be required by law, the trustees shall either sell or let any land belonging to the Charity which is not required to be retained or occupied in furtherance of the objects.

The trustees shall that on the grant by them of any lease the tenant shall execute a counterpart lease. Every lease shall contain a covenant on the part of the tenant for the payment of rent and a proviso for re-entry on non-payment of the rent or non-performance of the covenants contained in the lease.

The trustees shall keep in repair and insure to their full value against fire and other usual risks all the buildings of the Charity which are not required to be kept in repair and insured by the tenant and shall also insure suitably in respect of public liability and employer's liability.

(1) The trustees may amend the provision of this deed, provided that: (a) no amendment may be made to either clause B (objects clause) or T (trustees not to be personally interested clause) without the prior consent in writing of the Commissioners; and , (b) no amendment may be made which has the effect of the charity ceasing to be a charity at law.

(2) Any amendments shall be made by deed under the authority of a resolution passed at a special meeting of the trustees.

(3) The trustees should promptly send to the Commissioners a copy of any amendment made under this clause.