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Parliamentary debates and questions

S5W-12709: Alex Cole-Hamilton (Edinburgh Western)

Scottish Liberal Democrats

Date lodged: 13 November 2017

To ask the Scottish Government what steps it is taking to improve knowledge and awareness in the NHS of myeloproliferative neoplasms.

Answered by: Shona Robison 22 November 2017

The Scottish Government recognises that there are particular challenges around raising awareness amongst clinicians of the many varied rare diseases. These are not issues unique to Scotland and in 2009 the European Union recommended that each EU state have in place a rare diseases plan or strategy by the end of 2013. This led to the four nations of the UK coming together to publish the UK Strategy for Rare Diseases in November 2013. As part of this joint project, Scotland published the Implementation Plan ‘It’s Not Rare to Have a Rare Disease’ in June 2014.

One of the aims of the Scottish plan is to secure rapid and effective translations of advances in the understanding of rare disease into clinical care by creating appropriate infrastructure, care pathways and clinical competences. This will include education and training programmes that enable health and social care professionals to better identify rare diseases in order to help deliver faster diagnosis and access to treatment pathways for patients.

Through this plan, we are working together with partners to improve the outcomes and support for people with rare diseases. The Scottish Government cancer strategy ‘Beating Cancer: Ambition and Action’ complements the actions of the rare disease plan through its focus on early detection, diagnosis and treatment for all forms of cancer, including rare cancers.