Regulations have been made under the Data Protection Act 1998 to enable people to access their personal health records.
These provisions do not lay down any minimum age for a right of access. However, it would be necessary to ensure that the child had the intelligence and maturity to understand the nature of the records and the likely consequences of access. The test used by the House of Lords in the Gillick case to assess the competence of the child to access her records would be applied.
The assessment of the child’s mental capacity would be carried out by an appropriate health professional and the information conveyed to the data protection officer.
A check would have to be made as to whether any of the exceptions to access existed. These exceptions include the right to refuse access if access would cause serious harm to the mental or physical health or condition of the applicant or another person. In addition, access can be withheld if a third person mentioned in the records has refused to give consent to their being identified. This cannot be a health professional caring for the child.
The views of the parents on access by the child would be sought but they would not have a right of overruling access if the child was assessed as competent and the exceptions to access did not exist.
In this situation, an assessment would be made of the mental capacity of the 13-year-old. Often children with major illnesses develop an awareness and maturity beyond their age so it could not be assumed from the fact that this child is only 13 that she lacks the requisite mental capacity.
It would appear from the fears of the nurse that the child has not been told that she has a terminal illness. If this is so, then her request to see her records may have resulted from a lack of communication between herself, her parents and her health professionals.
If the consultant paediatrician considers that the patient could see her records, there is no reason why she would have to apply formally through the statutory right of access. The consultant will wish to discuss the decision with the multidisciplinary team and the patient’s parents.
If access were agreed, good practice would ensure that her personal nurse or another healthcare professional involved
in the girl’s treatment went through the records with her. If informal access were refused, then the patient could exercise her statutory right to apply to see them. If that resulted in a refusal, then she would have rights to appeal against that decision.
Bridgit Dimond, MA, LLB, DSA, AHSA, is barrister-at-law and emeritus professor, University of Glamorgan, Pontypridd
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