Mrs A complained that there was a lack of comprehensive provision and support by the Health Board in the service it provided to her husband, Mr A, following his motor neurone disease diagnosis (“MND”, an uncommon condition affecting the brain and nerves that causes weakness which gets worse over time) and that the Health Board’s provision of MND services to Mr A was not in line with national guidance on the assessment and management of MND (“the Guidance”). The investigation considered whether – following Mr A’s diagnosis of MND – there was a delay in referring Mr A to the MND team, in starting riluzole treatment (an approved drug licensed for treating MND in the UK), and in scheduling a follow up appointment with Neurology. It also considered whether there was a failure to provide support and advice and to make a timely referral for clinical trials.
The Ombudsman found that the referral to the MND team was made in line with the timescales set out in the Guidance, the care in relation to riluzole was acceptable and that the time between the initial consultation and follow up was appropriate. She also found that, overall, appropriate steps were taken to provide support and advice in line with the Guidance and that an appropriate referral for clinical trials was facilitated in line with the requirements of the Guidance. The complaints were not upheld.