Date lodged: 17 April 2019
To ask the Scottish Government what processes are followed ahead of a bone marrow transplant for people with mucopolysaccharidosis (MPS) to ensure that there is sufficient expertise and experience available to guarantee patient safety.
Answered by: Jeane Freeman 14 May 2019
Normal governance mechanisms are in place to ensure that that treatments are planned by a multi-disciplinary team who are accredited specialists and who undergo regular revalidation.
The recommendation of any medical intervention is based on risk versus benefit considerations. These risks being those actual and immediate ones and those anticipated by the anticipated progression of the underlying condition leading to complications (including limited treatment options, increased complication rates and including worsening health compromise, disability and /or further limitation of life expectancy). Benefits from successful treatment have to be viewed within the context that all treatments (or having no treatment) carries inherent risks as described and that successful treatment (partial or complete) are expected to have short and long term benefits for the individual patient. The process of consent for treatment is a culmination of a process that seeks to address the risk / benefits described above. Accepting that there is a range in the way that any individual patient will be affected by an underlying condition, the nature of MPS is such that their management and any treatment offered has to be individualised. Bone marrow transplant (BMT) is offered on the basis of these risk / benefit assessments in the context of the utility of BMT compared with other treatment options and all treatments have limitations and therefore fluctuating risk / benefits.