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Decision Report 201608034

  • Case ref:
    201608034
  • Date:
    September 2017
  • Body:
    Lothian NHS Board - Acute Division
  • Sector:
    Health
  • Outcome:
    Upheld, recommendations
  • Subject:
    clinical treatment / diagnosis

Summary

Mrs C complained on behalf of her late husband (Mr A) who was being treated for a brain tumour at Dumfries and Galloway Royal Infirmary. Mrs C enquired with the board about the methylated status of Mr A's brain tumour as she had learned that it was useful to know this in deciding whether to accept chemotherapy. (Methylation is a chemical change which alters the MGMT gene, making treatment more effective.) The board told Mrs C that this information was not available at the time she enquired. Mrs C complained that the board failed to perform a test to confirm the methylated status of Mr A's brain tumour. She also complained that the board failed to respond to her queries within a reasonable timescale. The board responded and advised that the test was not available in the board area at the time.

In investigating Mrs C's complaint, the board carried out the test and it was found that the tumour was unmethylated. The board also confirmed that the methylation test is now carried out in all grade 3 and 4 gliomas (malignant tumours of the glial tissue of the nervous system) in the board area. We took independent advice from a consultant neurosurgeon. The adviser noted that knowing the methylation status of the tumour would have some bearing on the likelihood of the chemotherapy being effective. Our investigation found that even though the test was not routinely carried out by the board at the time Mr A was receiving treatment, the test could have been requested from another department. We also found the board failed to deal with Mrs C's complaints within the required timescale and they failed to advise her of their need to extend their response time. We upheld both of Mrs C's complaints and recommended that the board provide Mrs C with a written apology.

Recommendations

What we asked the organisation to do in this case:

  • The board should provide Mrs C with a written apology, acknowledging that they failed to perform the test and failed to respond to her queries within a reasonable timescale.

We have asked the organisation to provide us with evidence that they have implemented the recommendations we have made on this case by the deadline we set.

Updated: March 13, 2018