Information Commissioner's Office
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ICO criticises “disappointing attitude” of dementia charity

The ICO has found serious failings in the way volunteers at a national dementia support charity handled sensitive personal data.

It has ordered The Alzheimer’s Society to take action after discovering that volunteers were using personal email addresses to receive and share information about people who use the charity, storing unencrypted data on their home computers and failing to keep paper records locked away.

Furthermore, volunteers were not trained in data protection, the charity’s policies and procedures were not explained to them and they had little supervision from staff.

Head of Enforcement Stephen Eckersley said:

“In failing to ensure volunteers were properly supported, this charity showed a disappointing attitude towards looking after the very sensitive information that people trusted them with.

“Volunteers form the cornerstone of many charities’ work and we all admire and appreciate their personal commitment and goodwill. They play an important role and must be given the support to handle personal data as safely as paid members of staff. Anything less is unacceptable and, considering the vulnerability of the people who use the Society’s services, we have acted.”

The failings concerned a group of 15 volunteers recruited in 2007 to help dementia sufferers and their families or carers seek NHS healthcare funding. Between them, and over a seven-year period, they handled 1,920 cases. As part of their role they drafted reports including sensitive information about the medical treatment, care needs and mental health of the people they were trying to help.

Although the charity has made improvements since the shortcomings were identified in November 2014, the ICO has issued it with an enforcement notice because it is concerned that more needs to be done.

Mr Eckersley said:

“Our investigation revealed serious deficiencies in the way The Alzheimer’s Society handles personal information. Some of these have been addressed, but the extent and persistence of the charity’s failure to do as we’ve asked means we must now take more formal action.”

As well as issues around the security of personal data, the charity’s website was hacked earlier in 2015, putting at risk around 300,000 email addresses, 66,000 home addresses, phone numbers and some birth dates.

The ICO made a series of recommendations in the wake of the attack and the Society implemented most of them. But the charity did not undertake manual checks of its website, a practice the ICO believed to be crucial in detecting vulnerability. The enforcement notice now requires them to do that.

The ICO has made other recommendations that the charity has failed to implement fully. In 2010 it agreed to a series of security measures after several unencrypted laptops were stolen during an office burglary. And it has been the subject of two audits – in March 2013 and March 2014 – which made recommendations about data security.

If the charity does not comply with the enforcement notice it could face prosecution.

Notes to Editors

  1. The Information Commissioner’s Office upholds information rights in the public interest, promoting openness by public bodies and data privacy for individuals.
  1. The ICO has specific responsibilities set out in the Data Protection Act 1998, the Freedom of Information Act 2000, Environmental Information Regulations 2004 and Privacy and Electronic Communications Regulations 2003.
  1. The ICO can take action to change the behaviour of organisations and individuals that collect, use and keep personal information. This includes criminal prosecution, non-criminal enforcement and audit. The ICO has the power to impose a monetary penalty on a data controller of up to £500,000.
  1. Anyone who processes personal information must comply with eight principles of the Data Protection Act, which make sure that personal information is:
  • fairly and lawfully processed;
  • processed for limited purposes;
  • adequate, relevant and not excessive;
  • accurate and up to date;
  • not kept for longer than is necessary;
  • processed in line with your rights;
  • secure; and
  • not transferred to other countries without adequate protection.
  1. The Privacy and Electronic Communications Regulations (PECR) sit alongside the Data Protection Act. They give people specific privacy rights in relation to electronic communications.

There are specific rules on:

  • marketing calls, emails, texts and faxes;
  • cookies (and similar technologies);
  • keeping communications services secure; and
  • customer privacy as regards traffic and location data, itemised billing, line identification, and directory listings.


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