Helen’s story

My story begins in August 2004 when I first became aware of the national database for medical records – the NHS Care Records Service.

I naively assumed that you just wrote to your local Primary Care Trust to opt out of this database. But when I contacted my local Primary Care Trust they did not know how I could opt out. My MP Mr Paul Goodman then intervened and obtained an Adjournment Debate in June 2005 about the issues I had raised. The Department of Health (DoH) eventually agreed to remove all my personal and clinical details from all NHS databases, but it has taken them 2 years to remove all my details.

John Hutton, former Health Minister, was invited with me onto the Radio 4 Today Program on the 31st March 2005 where he stated, “Mrs Wilkinson does not have to have an NHS Care Record if she does not want one”. Indeed Caroline Flint, Minister for Health, in my Adjournment Debate stated that no-one would be denied NHS care if they chose to have some or all of their medical records removed from these NHS databases. However, as my case highlights, the reality is somewhat different.

The Dep’t of Health have stated that Section 10 of the Data Protection Act applies to me, whereby “the holding, storing and processing of my personal and clinical details is likely to cause [me] substantial and unwarranted distress” under the Act. They have said that none of my personal and clinical details should be on any NHS database. But nothing whatsoever has been put in place to allow me to access medical care. And in an email from Linda Percival, Director of Customer Services at the Dep’t of Health, I was told that if I were to attend any NHS hospital there is very little I can do to stop the hospital putting my personal and clinical details on their own database – which will give me an NHS Care Record!

I also have direct proof that NHS databases can be accessed by reseachers without patient consent. My name, address and GP details were given to a research study by the National Strategic Tracing Service (NSTS) database without my consent and I was later contacted by researchers, the week before I was due to undergo major surgery. Given my ongoing concerns, this could have had very serious consequences – had I decided not to go ahead with the surgery.

To ensure that I am not placed on the Personal Demographics Service (PDS), which would give me an NHS Care Record, my GP has very kindly de-registered me from the NHS – but still sees me as a patient free of charge. This is not, however, the solution for all patients and it is doutful that many GPs would agree to offer this. A further downside is that as soon as I need hospital treatment, I would again have an NHS Care Record without my consent.

At the present time I am left completely without access to medial care, other than being able to see my GP as a non-registered patient. Even though the Dep’t of Health have said that Section 10 of the Data Protection Act applies to me – where me being on NHS database is likely to cause me substantial and unwarranted distress – absolutely nothing has been put in place to ensure that I can access medical care. This is contrary to the Health Minister’s assurances in both my MP’s Adjournment Debate and on Radio 4’s Today program.

My story can be found here in The Guardian: http://politics.guardian.co.uk/publicservices/story/0,,1937018,00.html






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