Activist boycotts NHS treatment over ‘information segregation’


theweeksubAn activist is boycotting all health treatment from his GP and local hospital, despite forcing the Department of Health to promise to find a way to provide accessible information to disabled patients.

Following legal threats from Graham Kirwan, the Department of Health has agreed to develop a system that will alert surgeries and hospitals when a disabled patient needs to receive confidential health information in a particular format, such as email.

NHS England has set up an advisory panel to draw up the new “information standard”, which will require health professionals to obtain a patient’s preferred reading format, and then force them to use that format when sending information.

The Department of Health only backed down and agreed to set up the panel after Kirwan threatened them with a judicial review, through his lawyer, Louise Whitfield, of solicitors Deighton Pierce Glynn.

Despite his victory, Kirwan is so frustrated at having to continue to share his confidential health information with other people that he is now boycotting all further health treatment until his local services agree to send him information by email, so he can access it via screen-reading software or magnification equipment.

He has removed himself from his doctor’s patient list and is refusing to be treated for a hiatus hernia – or any other health problem that arises – until his local GP surgery and hospital in the West Midlands agree to email him with information about appointments and heath services instead of sending it through the post.

Kirwan, who is visually-impaired, said: “It is drastic, but that is where I am now. If something happens to me in the meantime, that is the risk I have to take. That is how desperate I am.

“I have already missed one appointment. I am not trying to be melodramatic. I have nothing to lose.

“Every public authority in this country refuses to contact me using accessible information. I am not excluded, I am segregated from mainstream society. Nobody can live their life without access to information.”

He says he will only rejoin his GP’s list “when a system is in place that treats everybody equally”.

He is now considering a judicial review of the refusal of Dudley Group NHS Foundation Trust to provide him with information about appointments and health services via email.

He says the trust is breaching its public sector equality duty and discriminating against him under the Equality Act by failing to make reasonable adjustments.

He also believes it is breaching article eight of the European Convention on Human Rights, which covers the right to respect for private and family life, including personal correspondence.

Kirwan said that his laptop and email were both secure, thanks to password protection and other security measures, but every time he was sent a letter by post he had “no option but to share that information with a third party”.

He added: “Everybody seems to be paranoid about me receiving information by email. If somebody wants to receive information about my piles they are welcome to hack into my account.”

Whitfield said: “It is astonishing that the NHS had no national system for addressing this crucial disability and human rights issue.

“There are information standards to cover hundreds of other details about patients, but nothing to enable healthcare providers to capture preferred reading format and then use it to provide patients with information they could access for themselves.

“It is also incredible that this has been such a long hard battle for my client with each healthcare provider he deals with, when the Equality Act specifically requires service providers to make reasonable adjustments, and to anticipate what disabled service-users need.”

Paula Clark, the foundation trust’s chief executive, said: “We have been working with Mr Kirwan for the last four years to provide him with information in a format which meets his expectations.

“Despite this, he is still dissatisfied and, therefore, this matter is in the hands of our solicitors.”

The Department of Health has so far declined to comment.

Kirwan’s campaigning will not end when the NHS eventually introduces its new information standard. He wants all other public bodies and service-providers – including banks – to make similar adjustments to their procedures.

He said: “I cannot have an ISA, a savings account or life insurance because they are all by paper. The banks have said categorically that I can’t have it in any other format but Braille.”

He said that Braille was now out-dated and was used by less than one per cent of visually-impaired people in the UK.

He does not use Braille, and even if he did he would not be able to use it to respond to letters.

“As a visually-impaired person I use my laptop as my primary way to communicate, but every single public authority denies me the right to communicate via email.

“I am not supposed to have to keep going cap in hand asking for this, it should already be in place.”

30 May 2013