As part of the campaign in the Scottish Parliament, Members of the Scottish Parliament (MSPs) Malcolm Chisholm and Graeme Dey wrote to the Cabinet Secretary for Health and Wellbeing, Alex Neil MSP, on behalf of their constituents, to raise the issue of the level of care provided to patients with Alpha-1 Antitrypsin Deficiency (Alpha-1) in Scotland.
The key points in the Minister’s response letter are as follows:
- The Minister reiterated the Scottish Government’s commitment to raising the profile of rare diseases such as Alpha-1 and referred to the UK Rare Disease Strategy. An Implementation Plan for Rare Diseases in Scotland is currently being developed with the aim of delivering the commitments set out in the Rare Disease Strategy, published in November 2013, to improve services for people living with a rare disease and their families.
- The Minister’s letter provided an overview of the current care arrangements for patients with Alpha-1. A Managed Clinical Network (MCN) approach is in place in Scotland that brings together professionals from primary, secondary and tertiary care with patients and carers, to work in a coordinated fashion across geographical, organisational and professional boundaries. The National Advisory Group of Respiratory MCNs (NAG RMCN) was also highlighted as a structure that helps to ensure a coordinated approach with the aim of improving respiratory services, serving as a platform for local MCNs and other key stakeholders to discuss issues, find solutions and share best practice.
- The Minister highlighted the Scottish Government’s interest in welcoming study proposals in Alpha-1 from the research community to further research in this area.
To access a copy of the Minister’s letter on Alpha-1, please follow the link.
Source: Alpha-1 Alliance 20/05/2014