Selective Regulation

I have held off from posting about the Charity Commission for quite a while, because I wanted to give them enough time to fulfil the assurances they have given me and others about effectively regulating certain charities operating in the health space. But enough is enough. I have engaged with the Commission over the last eight years, and nothing substantive has changed. I don’t believe this is because it’s a basically useless regulator. Very detailed and professional-looking enquiry reports on a wide range of compliance issues in charities are published by the Commission. They know how to do the job, and have resources, but it looks as if there are bits of it they just don’t want to do.

It’s all so disappointing. I have met several of the top people at the Commission, and face to face they agree with me, and assure me that they are giving high priority to the problem of charities failing in their public duty, by misleading vulnerable beneficiaries with false claims of health benefits. Sadly I see utterly no evidence of that. In October 2019 I attended the Commission’s annual public meeting in Bristol. The moment I arrived the CEO Helen Stephenson rushed over to me with a very warm welcome. She introduced me to other top officers and seemed very supportive. It was a pretty effective charm offensive, and I left the meeting full of optimism. That was somewhat misplaced.

But let me get you up to date. Back in 2016 my friends at The Good Thinking Society launched a legal challenge to the Commission, on the basis that it was failing in its statutory duty to ensure that all charities provided public benefit. The Commission responded by issuing a consultation, and then updating its internal guidance on charities promoting complementary and alternative medicine (CAM). The story is better explained on the GTS website. The historical problem wasn’t that there was a great deal wrong with the old guidance, it was just that the Commission didn’t apply it. Nevertheless, the new guidance was better, and so in July last year I began a new round of complaints, about eight charities. Of these, one has deregistered, not because of compliance issues, but because its income fell below the threshold for registration. This was the Vaccine Awareness Network. I won’t go through all the others, except to highlight The Gerson Support Group. As you probably know, Gerson therapy claims to treat cancer (already a breach of The Cancer Act 1939), with an extreme regime of plant based nutrition, supplements including vitamin megadoses, and pumping coffee up your bottom. It is extremely expensive, in terms of food, supplements, equipment, and books. The charity doesn’t sell this stuff itself, but it does sell training days at £129.50 per desperate patient. Of course, you’ll need a carer to attend as well, at £99. To be fair to the charity, I asked them for evidence to support their claims, and the exchange is covered in my previous post. Briefly, there is no evidence other than Gerson’s book and various other anecdotes.

Here is the Charity Commission’s initial response to my complaint about The Gerson Support Group;

Thank you for your email dated 7th September 2019 in which you raised concerns about GERSON SUPPORT GROUP – 1063646.

Thank you for taking the time to notify the Charity Commission of your concerns relating to the charity.

Your concerns have been assessed by a senior case worker. We have decided to keep the information you have provided on the charity’s records. This means that we will reassess this matter should further information come to light.

I would also like to reassure you that the information you have provided will be used by the Commission to highlight particular areas of concern to the public and to drive improvements across the charity sector. We review all matters of concern that come into the organisation on a regular basis to inform our regulatory work and to identify issues or threats of harm to the sector as a whole.

We will also use this information to inform our proactive work with charities to address issues of concern. This can result, for instance, in a spot check on a charity, a letter to trustees, or a regulatory alert to a particular group of charities

At the Charity Commission we want to ensure that charity can thrive and inspire trust, so once again I appreciate the time you have taken to contact us.

Over the following year I asked the Commission four times what progress they were making, regarding this and the other complaints. On 4th October 2019, I was told that

…we have contacted the trustees and put a number of questions to them. We are waiting for their responses.

How long do they wait? This was three months from the date of the complaint. After another chasing email I was told (on 1st January 2020) that

The field of Complementary and Alternative Medicine is complex and it will take us some time to gather all of the information required to then examine this in consultation with our lawyers in order for us to make an informed decision.

Note that they referred to lawyers and not scientists as sources of advice. They had already had half a year to do this. As they implied previously that further information might encourage them to revisit a shelved complaint, on 19th July 2020 I nudged them with this BBC story about the harm that quack cancer cures can do. I received no more than a two-line acknowledgment – this a whole year from the original complaint. Meanwhile cancer patients die earlier than they need to.

The Commission pleads lack of resources regarding keeping complainants informed. I told them that I don’t expect a running commentary, but I do expect to know if they are actually doing anything. Surely a public body is accountable to the public?

Then in October this year the Commission’s annual public meeting came round again, online of course. Questions from participants were invited, so by return I got mine in. Here it is:

At last year’s annual public meeting we were told that the Commission would no longer ignore complaints. Can you tell me why, after more than a year of `investigating’ several complaints’, there is no outcome? In these cases serious concerns were raised about charities misleading the public with false claims about health and disease. Why does the Commission only take legal advice, and not scientific advice?

Can you guess what happened? My question was not accepted, because it was “almost identical” to two other questions. No it wasn’t, my good friend Professor Susan Bewley, chair of HealthWatch, was allowed to ask about the criteria for registering new charities in the health sector (see later). Not at all same as whether they are doing anything about complaints. I protested, and got this written reply:

The Commission assesses applications for charitable status robustly, in order to ensure that only genuine charities are registered. In 2019-20, 60% of applications for registration were successful and 40% were rejected. We also take forward complaints about charities when these are made to us.

When considering a complaint, we must and do engage directly with the trustees of a charity on any concerns raised about them with us in the first instance – and before we respond to the individual who brought the issue to our attention. We provide an update on our engagement on a complaint but it can be the case that some details relating to a regulatory matter are a matter for us and the charity in question alone, but we do aim to provide all detail we can at the appropriate time.

With regards to charities that we have received complaints about the use of false or unproven medicine, in 2018 we completed a comprehensive review of our approach to assessing applications from organisations which use or promote complementary or alternative medicine and we published our updated approach (here outcome report following the CAM review). This review led to amending our guidance to take account of the range of evidence sources available, including the relevant medical and medicines licensing authorities to reflect the range of ways in which these organisations may be able to demonstrate public benefit. The evidential issues involved in some cases can be highly complex, but we are committed to ensuring that only genuine charities, which are established for the public benefit, are registered. Therefore, it is not the case that we only take legal advice, we also refer to the relevant available scientific advice.

We have received complaints regarding the activities of registered charities which use or promote alternative medicine and these complaints are dealt with in line with our usual procedures as for any other charity. We are considering complaints regarding the charitable status of registered CAM organisations, and it is right that we consider these on their own merits, in line with the policy approach adopted following our review in 2018. We are not in a position at this stage to publish any conclusion to this work or share charity or case specific, but we will consider whether any future publication may be appropriate at the relevant time.

Where do I start? It kicks off by answering a question I didn’t ask, and then claims that “We provide an update on our engagement on a complaint…”. No they don’t, they have been quite specific that they are not obliged to update complainants, and they never have without pressure from me. Even then, there is nothing of substance. Their third paragraph talks at length about the consultation and new guidance, but again I didn’t ask about those. I have repeatedly asked the Commission why they have mentioned taking legal advice about a complaint and not scientific advice, and they don’t answer. The last paragraph is waffle, and doesn’t say a word to explain why they have so far taken 14 months to achieve nothing.

As for “we are committed to ensuring that only genuine charities, which are established for the public benefit, are registered”, there are thousands of charities that have no other purpose than promoting religion, and that is not admissible as a public benefit under The Charities Act 2011. They should never have been registered, but in public life religion always gets a free pass.

Susan Bewley’s question was:

The Charity Commission grants charitable status to a large number of organisations that do not confer any “public benefit”. Many of these exist to promote various forms of ‘alternative medicine’, most of which are known to provide no benefit and some of which do harm. Will the commissioners agree to improve their criteria for which organisations provide public benefit?”

The Commission replied thus:

The Commission assesses applications for charitable status robustly, in order to ensure that only genuine charities are registered. In 2019-20, 60% of applications for registration were successful.

In 2018 we completed a thorough and comprehensive review of our approach to assessing applications from organisations which use or promote complementary or alternative medicine, and we published our updated approach. This involved amending our guidance to take account of the range of evidence sources available, including recognised medical databases and the approach taken by relevant authorities to reflect the range of ways in which these organisations may be able to demonstrate public benefit. The evidential issues involved in these cases can be highly complex, but we are committed to ensuring that only genuine charities, which are established for the public benefit, are registered.

When we receive complaints regarding the activities of registered charities which use or promote these types of therapy, these are dealt with in line with our usual procedures as for any other charity.

We are considering a number of cases in which claims have been made regarding registered CAM organisations, and it is right that we consider these on their own merits, in line with the policy approach adopted following our review in 2018. We are not in a position at this stage to publish any conclusion to this work, or share charity or case specific information, but we will consider whether any future publication may be appropriate at the relevant time.

I always think that the length of an answer betrays the effort the writer is expending to avoid the question. You can see the copy and paste going on here, between this and the other reply. The “usual procedures as for any other charity” seem to mean taking years to process a complaint, assuming they are doing anything at all, which they won’t divulge.

I have to wonder whether the Charity Commission is acting in good faith. So far, assurances that they take this matter seriously have not been associated with the tiniest scrap of evidence that they are. At the public meeting in October 2019, I was told that another charity, the Human Organ Preservation Research Trust, had been earmarked for closure. I had not complained about it, but it looked very dodgy to me. Over a year later it still operates. I can’t see how collecting money from people who want to be frozen after death, in case some miracle enables their resurrection, is a public benefit. Under such circumstances, I’d have thought that extending life would be a benefit, rather than allowing the grim reaper to visit as usual.

The problem is lack of oversight. Years ago I raised a case with the Parliamentary and Health Services Ombudsman, but they were at least as useless as the Charity Commission. As well as public bodies, what is also needed is enough ordinary people who think it matters. My MP doesn’t, he thinks it’s just a matter of my opinion.