Consultation response specialised comm 27 04 15

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April 27th 2015 NHS England Full consultation response-‘Investing in Specialised Commissioning’ 1. Do you have any comments on the proposed process described above in paragraphs 20-24 for making investment decisions about specialised services? There is not enough detail in the consultation document about this process to comment. The descriptions of the parts of the process involved are very broad and do not really pin down who or how decisions about which treatments and services should be funded are reached. We understand that some SOPS have now been published for developing services specification, however, we are not able to access these, although some other stakeholders have been given access to these. This makes this consultation incomplete and non-transparent. Additionally, the proposed process still has inherent roadblocks for patients with rare diseases such as Rett Syndrome as the cost per QALY system/proposed scorecard methodology will obviously favour the majority with prioritisation of common conditions and acute situations where cost per QALY is lower. As a patient group representing approximately 2400 patients with Rett Syndrome and related MECP2 disorders in the UK, we do not have confidence that this proposed process is either sound, fair or transparent. Because of the lack of transparency, it is not possible for patients, parents or carers, process. 2. Are there any additional stages in the process that we should consider introducing? It is difficult to answer this without any clarification of what happens at each stage of the process, which is being proposed. 3. Are there any additional stages in the process where engagement with patients and the public should take place? Patient representatives should be an implicit part of the decision-making process with patient representatives involved at every stage and on every level. Engagement means tell me what you think is best. Involvement means we will work out what is best together - at the proposed ‘decision making events,’ with all parties’ interests at the heart of the decision-making process and yes, this includes the patient.


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Consultation response specialised comm 27 04 15 by Rachael Stevenson - Issuu