1. Introduction

1.1 The nature and purpose of this policy

The Neuropathy Trust is the Registered Charity (No. 1071 228) that was founded in 1998 by Andrew Keen to provide a lifeline to sufferers of peripheral neuropathy (PN) and Neuropathic Pain (NP).

It is the primary function of the Neuropathy 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 committed to a better future for all sufferers of 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 provide a lifeline to all sufferers.

This policy represents The Neuropathy Trust’s corporate position on relations with the pharmaceutical industry. The Board of Trustees intend it to:

1. enable the Chief Executive Officer of The Neuropathy Trust to carry out his duties without the need for constant reference to the trustees
2. clarify the Neuropathy Trust’s own position to:

- its subscribers;
- its advisors;
- the pharmaceutical industry;
- the public.

Trustees and staff of The Neuropathy Trust are expected to adhere to the policy. Both policy and guidelines will be revised over time as circumstances demand.

1.2 Context

The press and the public are rightly concerned these days to be sure that voluntary health organisations (VHO’s) are free from commercial interest or pressure. For VHO’s this is particularly important in view of the growing public interest in self-help and complementary medicine.
The Trustees of the Neuropathy Trust therefore decided to prepare this policy as an unequivocal statement of why the Neuropathy Trust believes that co-operation between VHO’s and the pharmaceutical industry is both necessary and possible without any compromise of the independence of the VHO’s concerned.

2. Policy Statements

2.1 Relationships with pharmaceutical companies

• We believe it is important to maintain co-operative relationships with companies which develop, manufacture and market medicines and other treatments, so as to foster communication between the patients whose interests we represent and the companies whose decisions will affect their treatment.
• Relationships between Voluntary Health Organisations (VHO’s) and pharmaceutical companies can and should be based on equal partnership. Both sides must be prepared to move beyond the VHO’s being passive recipients of money to a scenario where the two work together on policy development and practical initiatives, in the interests of the patients whom the voluntary organisation represents, while preserving the voluntary organisation's independence.
• Each party should remember that successful partnerships are those where both partners gain something, and each should make efforts to understand the internal culture of and external pressures on the other.
• VHO’s should recognise that pharmaceutical companies have to be profitable, and will have their own particular marketing agenda, to which no VHO should ever feel obliged to conform. Funding should be rejected if the alternative is compromising the VHO’s independence in any way.

2.2 Funding

• We encourage the use of available funding so long as the VHO's independence is not compromised in any way and so long as there is total transparency in the relationship. Contracts between the parties are helpful in this respect, and indeed are sometimes required by law.
• We frown on relationships designed purely to give one company competitive advantage over another, and, where possible, we favour the use of funding consortia composed of two or more companies from the same industry.
• Joint research initiatives need to be approached with particular caution to ensure there is no unwitting erosion of independence and no contravention of the policies of the Association of Medical Research Charities (such as that concerning the payment of university overheads).
• The Neuropathy Trust itself accepts funding from pharmaceutical companies and pharmaceutical industry groupings on the following conditions:

- there must be strong grounds for believing it will result in benefit to the Neuropathy Trust and the people that it has a duty to represent;
- the Chief Executive Officer must be satisfied that no adverse publicity could reasonably be expected to accrue from accepting the funds and must, if he is uncertain about this, refer to the Board for advice before accepting
- there must be no attempt on the part of the funder to coerce or over-influence the Neuropathy Trust’s policy or actions in any way, either explicitly or implicitly.

A charity's good name is its most valuable asset. Both charity law and agreed best practice preclude the exploitation of a charity's name for non-charitable purposes, and the Charity Commission takes this very seriously. The Neuropathy Trust’s name must not be used to imply approval or endorsement of any of the donor's products or policies, without the prior explicit written approval of the Chief Executive Officer.

2.3 Product endorsement

• The Neuropathy Trust supports the availability of the widest possible range of treatments, whether medicines or otherwise.
• The Neuropathy Trust does not endorse individual treatments, of whatever kind, both because we believe people living with long-term medical conditions need the widest possible range of treatment options and the freedom to integrate them as they wish. These may include medicines, complementary therapies, lifestyle changes and non-therapeutic products.
• While recognising that for some illnesses there is little or no choice of treatment, our general approach is to encourage active partnership between patient and health professional and the discussion of all available options, in the interests of informed choice on the part of the patient.
• Where more than one branded version of a drug exists, we encourage the use, in communications by VHO’s with patients, of either the scientific name or the several different brand names, and the same applies to illustrations. It may not be practicable to mention every brand at every stage in a publication but overall the effect should be one of impartiality.
• We strongly support the application of licensing regulations and procedures to pharmaceutical products and believe that, in the interest of patients, similar standards ought to be required of individuals and organisations wishing to market non-pharmaceutical treatments to the general public.

updated Monday, 14 October 2006

Neuropathy Trust Board of Trustees
The Neuropathy Trust
PO Box 26
Nantwich
Cheshire
CW5 5FP