The Data Protection Act and access to records

The Data Protection Act can become relevant to people with a mental illness, or for their families and carers; in relation to gaining access to your health and medical records.
The right to look at our health records was first introduced by the Access to Health Records Act 1990. In March 2000 the Data Protection Act (DPA) partly replaced the Access to Health Records Act.

The DPA covers not only health records but others including housing and social services records, both manual and computerised. The DPA does not cover access to manual records held before 24 October 1998 and health and social care manual records that are not held in a relevant filing system. Even with the exemptions, you still have a right to be given basic information. The Access to Health Records Act covers access to records of deceased patients.

The Human Rights Act 2000 is also likely to be quoted on the subject of health records.

Your Health & Medical records


Whenever a doctor or health professional sees you they will write up what they have observed, their thoughts on your illness and any treatment they have prescribed in your health records. At some point you may wish to see your health records to see what they have written. Health records that you might want to see include those written by:

medical doctors, nurses, clinical psychologist, or child psychotherapist, art/drama/music therapist, occupational therapist

why might you want to see your health records
There are a number of reasons why people want to see their health records. Among the most common are:
  • you want to see what health professionals have written about you or what health professionals read about you
  • you want to know your diagnosis
  • you want to make a complaint

can anyone else see my health records?
 You can authorise someone else, for example, a relative, advocate or a solicitor to see your records.

If you die and there is an inquest into your death, it is possible for anyone who has a claim arising out of your death to see your medical records. This might be your partner, parents or a close relative. Further information on getting medical records for a dead relative can be found here.

can a child see their health records?
 A child of 12 years or over will generally be presumed to have sufficient age and maturity to exercise their rights under the DPA to have access to their health records.

A parent of guardian does not have a right to see their child's health records unless the child has authorised the request. The data controller may ask for evidence of the child's agreement. A parent or guardian may be allowed to see the records if it is in the interests of the child or young person and that they are incapable of understanding the nature of the application.

Getting access to your records

If you want to see your health records you need to write or email the 'data controller' who is usually a doctor, medical practice or NHS Trust. In the letter you should include your name, address, date of birth and any other information which would help locate your file. I would be helpful to mention that the request is made under Section 7 of the Data Protection Act, and to send the letter by recorded delivery.

is there a charge?
As long as you apply to look at your records within 40 days of the last time they were updated and that you do not require copies, there should be no cost. After 40 days, you may be charged up to £50. If you want a copy of your notes you may be charged up to 25p per photocopy.

when will I get the records
 The data controller (usually the person you write to to see your records) should release the records to you within 40 days of your request. In practice, it can be considerably longer than this.

can any information be withheld?
Yes. Any information that 'would be likely to cause serious harm to the physical or mental health or condition of the data subject or any other person' can be withheld. However, only seriously harmful information can be withheld and it must be supported by a recent opinion from an 'appropriate health professional', usually your doctor. Also information about a third party can be withheld unless this person consents (but they need not consent if they are a health professional).

In practice, the notes are not always complete when you get them. They may have removed sensitive information or blocked it out. If you are concerned that information is missing you should contact the person 'data controller', that is the person you wrote to request to read your notes

Difficulties in getting access

Mental capacity in this instance is the ability to make the decision whether or not to see your health records and to understand and remember the consequences of seeing your health records. It should be assumed that you have the mental capacity to decide to see your records. If you are refused access to your records on the grounds that you do lack mental capacity you could authorise a carer, advocate or relative to seek access. If access is refused again, the Human Rights Act and common law could be used to support the request. For further information advice on this issue contact the Rethink National Advice Service.

what if my records are not supplied or if there is a delay?
If you are having difficulty getting hold of your health records you can make a complaint. You will need to use the NHS Complaints Procedure. Your local Citizens Advice or the Rethink National Advice Service should be able to help. If you are refused access to your health records you can also ask the County Court or High Court to review the decision. Once again, the Rethink National Advice Service can help with this.

what if I disagree with the information on the record?
If you disagree with anything written in your health record you can ask for the health professional to correct it or that they add a written note giving your view. You have a right to receive a free copy of the amended record.

National Advice Service Factsheets

The information in this section is taken from the NAS factsheet, which you can download in pdf format and print for individual use.

Access to health records factsheet