Select Committee on Health Written Evidence


Evidence submitted by Helen Wilkinson (EPR 65)

  My story begins in August 2004 when I first became aware of the national database for medical records—the NHS Care Records Service. As an NHS Manager I knew immediately that I did not wish to be on any such Department of Health/NHS database.

  I naively assumed that one just wrote to the 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 two years to remove all my details and has left me without access to any medical care whatsoever.

  John Hutton, former Health Minister, was invited with me onto the Radio 4 Today programme on the 31 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 Department 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 demographic, personal or clinical details should be on any NHS/DH 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 Department 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 and result in my identifiable, demographic, personal and clinical details being used for Secondary User Services purposes!

  I also have direct proof that NHS databases can be accessed by researchers without patient consent. My name, address and GP details were given to a research study by the National Strategic Tracing Service (NSTS) database withoutmy 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 doubtful 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 and my demographic, clinical and personal details would be used for Secondary User Services.

  At the present time I am left completely without access to medical care, other than being able to see my GP as a non-registered patient. Even though the Department 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 programme.

  My story can be found here in The Guardian:

http://politics.guardian.co.uk/publicservices/story/0, 1937018A0.html

  The 93C3 Code just is not enough to ensure patient confidentiality all this achieves is to prevent the patients Summary Care Record from being shared. However the actual detailed medical consultation notes and in depth patient identifiable clinical details will still be stored on the Detailed Care Record and used by the Secondary Uses Services (SUS) without patient consent. Information used by the Secondary Uses Service is patient identifiable as the document I obtained under the freedom of Information Act states the Department of Health deem it impractical to anonymise these patient records.

http://wwvv.Iightbluetouchpaper..org/2006/08/09/anonymous-datathat-isnt/

  Indeed in the Department of Health Patient Information Advisory Group minutes of September 2005 (which are attached, paragraph 6.1)[118] it clearly states that it would be a waste of parliamentary time to debate the issue. Also is the attachment document which looks at Long Term Medical Condition programme it again clearly states that the Department of Health are fully aware that the use of patients identifiable medical data in this manner is potentially unlawfully A large number of both NHS and private companies have access to this highly confidential identifiable patient information including the Department of Health, Primary Care Trusts, Strategic Health Authorities, Researchers and even Dr Foster.

  In my own personal circumstances the Department of Health have deemed that Section 10 of the Data Protection Act applies to me and to on any DH or NHS database would cause me substantial and unwarranted distress under the Act. Even though the Department of Health have categorically agreed this is the case I personally have been left without access to any medical care. I seriously injured my eye last September 2006 and I enclose a copy of the email I received from Mrs Linda Percival Director of Customer Services at the Department of Health which clearly states that even though legaly under Section 10 of the DPA the DH and NHS cannot hold, store or process any of my demographic, personal or clinical details to receive medical care I have no choice but go back on all the DH and NHS databases.The DH are trying to cause me immense and immeasurable distress by asking me prove Section 10 of the DPA applies to me each time I am ill. This is contrary to the Data Protection Act one should only have to prove that Section 10 of the DPA applies once only not each time one needs medical care.

  The Department of Health have repeatedly failed to put anything in place to ensure I can access medical care. This is contrary to my Adjournment Debate where Caroline Flint Health Minister clearly states that no patient will be denied medical care if they choose not to be on any of these NHS/DH databases. Ifeel so incredibly strongly about these confidentiality issues that even in a medical emergency I would refuse all medical treatment if any of demographic, personal or clinical details where placed on any of these DH/NHS databases.Its worth noting that the DH deem I would be caused substartial and unwarranted distress under Section 10 of Data Protection if any of my demographic, personal or clinical details where placed on any DH or NHS database. let in view of this nothing has been put in place for me to be able to access medical care and I am completely reliant on the goodwill and kindness of both my GP and Hospital Consultant who see me free of charge. I am completely and totally unable to have access to NHS services such as blood tests, x-rays, out of hours care, community services for eg District Nurses, attend any Community Clinics for eg podiatry, attend any hospital as either an inpatient or outpatient, access any maternity services or have any NHS prescription-the list is long way.

  This is purely due to these DH and NHS databases as well as Section 10 of the DPA applying to me.

  My personal view is that I do not want nor would I ever consent to any of my demographic, personal or clinical details leaving either my GP or Hospital Consultants consulting room without my explicit consent. I firmly believe that the NHS Care Records Service and Connecting for Health should be disbanded and there should be secure local databases, by this I mean hospital and GP Surgery's should have their own databases that communicate with one another only with explicit patient consent.

  I also believe that medical data used for Secondary Services Uses (SUS) or for research purposes should either be truly anonymous or only to used with explicit patient consent.

  By profession I am an NHS Manager with over 20 years experience I have worked as a Manager in General Practice, for a Health Authority and for two London Teaching Hospital Trusts what has amazed me about this situation is that until I investigated and researched the whole area of patient confidentiality and the DH/ NHS databases I ones truly amazed and horrified that all this highly confidential identifiable patient information was being used potentially unlawfully withoutpatient consent. In view of this I set up The Big Opt Out Campaign to inform patients about both the NHS Care Records and patient confidentiality.

  The Big Opt Out Campaign has been a huge success. The demand from patients is enormous. The Campaign was formally started on 29 November2006. Over 75,000 people have downloaded our OptOut Letter. I taking approximately 100 phone calls a day from patients and dealing with 50 emails a day. I have anecdotal evidencethat numerous patients are so concerned that they are de-registering from the NHS so their medical records are destroyed and so that they do not get put on NHS CRS. I have also had other patients tell me that they are prepared to lie about their symptoms, medication they are taking and medical history as they cannot opt out of the Detailed Care Record or prevent their records being used by the

Secondary Uses Services. It begs the question what use is this medical data going to be to the DH and Researchers if it is inaccurate? Patients are also expressing huge concerns that unless they opt out of the Summary Care Records local high street pharmacists will be able to access this clinical information and their demographic details, including ex-directory phone numbers. I am seriously worried that there will be an under class of people left without any access to medical care whatsoever.

  With regards my own case I am left in the clinically highly dangerous position of being unable to access any medical care due to Section 10 of the DPA applying to me and the DH are totally refusing to do anything to enable me to access medical care. Hence the current highly unsatisfactory situation continues to cause me immense and immeasurable distress.

Helen Wilkinson

The Big Opt Out Campaign

March 2007




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