Decision

Pain UK: regulatory compliance case conclusions

Published 11 November 2019

This decision was withdrawn on 18 January 2022

This report has been archived as it is over 2 years old.

The Charity Commission opened a regulatory compliance case into Pain UK following an investigation by The Sunday Times newspaper which alleged close links between the patient voice charity and the pharmaceutical industry, namely a consulting agency called Cello Health whose clients include pharmaceutical companies. The charity had published a position statement which included advocating “equitable access and appropriate prescribing” of opioids for the management of pain.

Charities are trusted in a way that is unique, so any perception of a charity being misused or its mission and purpose being undermined is troubling.

The Commission asked the trustees about the charity’s funding, decision-making and how they manage conflicts of interest.

Whilst the charity has received funding from the pharmaceutical industry, its income has diversified over time and the reliance of that funding had decreased. The trustees made clear it is their policy to only accept unrestricted educational grants from donors. The trustees also provided assurances that the position statement in question was drafted independently by the trustees, who were fully responsible for its content and tone, and that they have complied with the conflicts of interest clause in their constitution. The charity had also called for better education, monitoring and support of patients when appropriately prescribed an opioid.

Concerns that the charity had been misused for non-charitable interests were therefore not upheld. The Commission did find that the trustees could have better demonstrated the independence that they themselves acknowledge is so important. For example, the position statement was only shared with the charity’s wider membership on the day that it was made public, and links to the pharmaceutical industry were not stated clearly on the charity’s website.

Whilst the charity was compliant with accounting requirements and the Commission did not find evidence that the trustees failed in their legal duties, they should do more to actively demonstrate that they are protecting the charity from outside interests so that they can inspire trust. This is particularly important as the charity’s name and website could position it as a national authority on pain management.

The Commission has therefore issued the trustees with formal regulatory advice under section 15(2) of the Charities Act which makes clear they should:

• consider the charity’s relationship with Cello Health, and any wider conflicts of interest. Formal terms of reference should be drawn up to confirm the extent of that company’s input in the charity’s work.
• consider the Commission’s Guidance for charities with a connection to a non-charity, and remember their duty to carry out their charity’s purposes for public benefit and in the best interests of the charity.
• review the board’s skills and expertise and consider whether they need to bring in additional professional knowledge, either by recruiting additional trustees or working with clinical professionals in partnership.
• consider using the wider membership more actively in its work. Not only should the trustees be satisfied that there is no inappropriate influence on its work, they should actively reassure its beneficiaries of this.

Charities often work positively with the private sector, and may indeed sometimes have aligned aims, perhaps around the advancement of research into healthcare. However a charity, particularly one that is supporting people who are suffering, must take all appropriate steps to ensure their intentions are made clear – that they operate solely to further their charitable mission and purpose, to improve the lives of their beneficiaries.

Going above the legal minimum and being as transparent as possible about the work that you do is an effective way for a charity to ensure that its supporters can have full confidence in its work.

We are pleased to note that Pain UK has already strengthened its governance. The trustees have drafted a policy on donations and pro bono work, as well as one dealing with conflicts of interest.

The Commission expects that the trustees will learn lessons from this case and move the charity forward in a way that inspires trust, so that they can have a positive impact on the lives of people living with pain.

Tracy Howarth, Head of Regulatory Compliance at the Charity Commission said:

We, and the public, expect charities to be driven solely by their charitable mission and purpose in everything they do, so it is right that we have examined Pain UK’s relationship with the pharmaceutical industry carefully, following concerns raised in the media. It is reassuring to us, and will be reassuring to the charity’s beneficiaries, that the trustees were able to demonstrate that the charity is not being misused.

Our case has, however, identified areas for improvement and we have issued the trustees with formal regulatory advice. We have had assurance that the trustees will address our concerns swiftly, so that the charity is better able to live up to public expectations around transparency.

Patient charities have a unique and special role to play in providing both practical and emotional support to people that are suffering. Because of this trusted position, it is vital that their actions cannot be misinterpreted; where charities accept support from industry, they should be as transparent and open as possible in order to positively demonstrate their independence and protect their integrity.

Industry also holds a responsibility here, and we would expect those that work with charities to take steps to ensure that any partnerships help a charity to thrive and further their cause.

Ends.

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