Pituitary foundation forum

Charity accused of mistreating its members

A charity that has been accused of mistreating its members is being investigated in relation to alleged breaches of data protection rules.

The Information Commissioner’s Office (ICO) has spent two years, so far, assessing a complaint against the Pituitary Foundation, a Bristol-based charity that specialises in raising the awareness of illnesses connected to the pituitary gland, and supporting sufferers and their carers.

The complaint, brought by former foundation member Jon Danzig, concerns the alleged improper processing, distribution and inaccuracy of information about him. It follows a long-running dispute between the foundation and Danzig after he was banned from posting on its website.

Danzig, a former investigative journalist who worked with broadcaster Roger Cook, suffers from a debilitating condition called acromegaly, caused by the excessive secretion of growth hormones from a tumour of the pituitary gland. Its symptoms range from joint pains, fatigue, carpal tunnel syndrome and sweating, to crippling headaches, deterioration of vision, sexual dysfunction, bone growth (especially in the feet, hands and face) and damage to the internal organs. A leaflet on the foundation’s website says: “Acromegaly affects a number of body systems and is associated with a two-fold increase in mortality, particularly from cardiovascular disease.”

In 2007, Danzig disagreed with the opinion of a specialist pituitary surgeon who had written to him in response to an article written by Danzig on the condition for the British Medical Journal. In the letter the surgeon said: “I still would maintain that for the majority of patients, perhaps over 90%, acromegaly is relatively symptom-free bar sweating, snoring, sleep apnoea and carpal tunnel. Your case remains extremely unusual and I think I have over 300 patients on my personal database of acromegaly surgery, so I have a lot of experience.”

The surgeon was, and still is, a member of the foundation’s medical committee.

Danzig felt the surgeon’s view was at variance with his own experiences and those of other sufferers, so he asked if he could raise the issue in a debate on the foundation’s website.

The charity’s executive director Kit Ashley agreed, adding that she didn’t censor the forum. However, the foundation then did exactly that: within a few days Ashley had ordered the two threads of the debate to be removed from the forum, and banned Danzig from posting again on the grounds that he had abused their service by emailing other members to draw their attention to the threads. Ashley also claimed that Danzig had sent numerous unsolicited messages to people who didn’t agree with him, a claim that Danzig strongly denies.

Danzig resigned his membership of the charity and thought that was the end of the matter, but a few weeks later he says he was told by fellow patients that “the foundation was distributing what I felt were unkind and untrue statements about me to a large number of people”.

He was forwarded an email sent by Ashley to its volunteer area co-ordinators asking all volunteers to refuse to comment or reply to Danzig should he approach them.

“The email stated that I was responsible for “misleading and inaccurate information”. I have always prided myself on being a truthful and honest reporter of facts, so I felt this was a very damning statement against me. However, the Pituitary Foundation did not explain, and has never explained, what it was that I had reported incorrectly.”

Danzig asked Ashley to rectify the “incorrect and misleading” statements being made about him, and, after failing to get a satisfactory reply, made a formal request under the Data Protection Act to see all the data the charity had processed about him. He was sent a few documents, mostly emails, and after being told by he foundation’s chairman Terry Lloyd that he was not entitled to see any more, he complained to the ICO.

Finally, after the ICO intervened, the foundation provided Danzig with a box containing almost 400 documents about him. Danzig says: “The documents revealed that the charity had started what felt like a campaign against me, telling others that I was the ‘master of misleading information’ and that I should be avoided.”

In one email sent on 16 January (before the threads were posted on the forum) by Lloyd to Ashley, Lloyd said of Danzig: “I will follow my usual procedure of ‘sleeping on it’ before ripping the guy’s throat out, whoops, wrong attitude!”

The foundation says that it would be inappropriate for it to comment in detail on questions put by the Guardian because both it and Danzig are legally represented and trying to resolve the issues raised. However, it adds: “The emails you refer to are taken from internal correspondence within the foundation, and should be read in the context of an ongoing problem that the Pituitary Foundation was trying to deal with.”

Danzig is not the only member to have a run-in with the foundation’s senior management. Joanna Lane contacted the charity last year asking for help after her son, Christopher, committed suicide at the age of 31. Christopher suffered a severe head injury after falling out of a tree as a child, and his mother believes this may have caused damage to his pituitary gland, leading to hypopituitarism and impotence – a common symptom of the illness.

Lane asked the foundation to lobby the National Institute for Health and Clinical Excellence (Nice) to publish information about the risk of developing hypopituitarism after head injuries, but her request was refused.

She says: “Since there are 22,500 severe head injuries a year giving 5,500 cases of hypopituitarism, to which must be added another 5,000 or so cases from mild traumatic brain injury, I naturally expected the Pituitary Foundation to take the issue up with Nice. I could not believe it when Ms Ashley reported that the trustees ‘didn’t think it was appropriate’.

“When I persisted on the phone to her, reminding her that there was probably a backlog of 300,000 undiagnosed cases from the past three decades and comparing it with the 80,000 cases currently on her books, she raised her voice to me saying that I did not need to waste my time or hers on pointing out how serious undiagnosed hypopituitarism was.

“Afterwards she did not answer any of my emails. The death of our son was still raw, and I felt shocked to be blanked out as if I were some sort of pest.”

Lane, who wrote about her son’s suicide and hypopituitarism for the Guardian last year, complained to the foundation’s trustees about Ashley’s behaviour, adding: “The primary ‘object’ of the Pituitary Foundation, legally, is to ‘promote the relief and treatment of persons suffering from pituitary disorders’. Undiagnosed persons suffering from pituitary disorders are not excluded – how could they be? Their situation is worse than anyone’s because diagnosed patients are at least getting treatment and support. Writing the letter [to Nice] would have cost the Pituitary Foundation nothing! Nor would it have taken any time worth mentioning. On what basis could anyone possibly refuse?”

The foundation denies that Ashley raised her voice to Lane. It adds: “Ms Ashley acted on behalf of the trustees, who discussed this matter thoroughly. The Pituitary Foundation’s financial and staffing resources are limited, and it is their duty to allocate them to the greatest need. The Pituitary Foundation have done a great deal of social research, and this need was not addressed by anyone but Ms Lane. Majority needs must take precedence when the Pituitary Foundation allocates resources. However, since then, the Pituitary Foundation have been contacted by Nice on this issue and they reported this as a matter of high priority. They spent time providing information and statistics to make a case for Nice to take the issue seriously, and have indicated that Nice would have the Pituitary Foundation’s support within our resources should they do so.”

Ashley combines her role as executive director of the Pituitary Foundation with writing steamy novels, entitled the “rock chick” series. A reader on Amazon describes one of Ashley’s books as “a book of crime, intrigue, cruelty, sex & an underlying love story which leaves you frustrated & eager to read the next chapter”.

She writes under the name Kristen Ashley, and on her Facebook page she says: “Kristen is depending on friends, family and her own iron resolve (that would be pink iron, if such a thing existed) to make this her living.”

The foundation admitted in its last report and accounts that membership was “low, lingering at 2,000”. To raise awareness and funds, it recruited Katie Price, the glamour model otherwise known as Jordan, last year to be an ambassador for the charity: Price’s son Harvey suffers from septo-optic dysplasia, a condition which includes hypopituitarism.

The foundation’s online forum, which many people used as a source of support and information, was closed last year. The foundation blamed its closure on “a spate of the kind of activity which could offend, upset or mislead users”. It plans to reopen in the first quarter this year to subscribing members only.

The foundation denies that its senior management lacks empathy with its membership, and says: “We are always solicitous and kind to our members. In the rare times member communications deteriorate, the foundation ensures that their communications with members are empathetic and measured. Many of our trustees and staff are patients themselves or have worked with pituitary patients for a long time. As an organisation, we strive to support our members needs. We feel we are empathetic and provide a supportive community. It’s very unfortunate that Mr Danzig and Ms Lane feel this way but we pride ourselves in providing support for our community generally.”

The charity has now published an apology to Danzig and Lane on its website which says: “It has come to our attention that two members of our community have felt it necessary to go to the media regarding decisions made by the trustees of the foundation. We are troubled that communications have deteriorated to the point where they felt the need to do this. In any charity, difficult decisions must be made in relation to the allocation of resources and the causes that they are able to champion. This can inevitably lead to some members being disappointed with the decisions that are made.

However, that said, we apologise to Mr Jon Danzig and Ms Joanna Lane for any distress we may have inadvertently caused.”