As Chair of the Specialised Healthcare Alliance (SHCA), I am delighted to have the opportunity to contribute to the inaugural edition of Specialised Commissioning. The SHCA is a coalition of charities, generously supported by our corporate donors, that campaigns on behalf of people with rare and complex conditions who require specialised care.
Established in 2003, the SHCA has a broad and growing membership of over 120 charities. Our members represent a diverse range of people living with conditions that require specialised treatment, from mental and paediatric illnesses to genetic and neurological conditions. The SHCA’s members also vary significantly in size, from umbrella organisations representing broad groups of patients to small…show more content… We are looking forward to welcoming Health Minister Lord O’Shaughnessy to our October meeting.
Ahead of these quarterly meetings, I meet with the leaders of NHS England’s specialised commissioning directorate to discuss policy developments and address members’ concerns. Through these meetings we have established a constructive working relationship with NHS England, which has enabled the SHCA to contribute to the development of new initiatives, such as the forthcoming framework for Sustainability and Transformation Partnership (STP) involvement in specialised commissioning, and the new NICE Commissioning Support Programme.
The SHCA also works across the UK to support the implementation of the Strategy for Rare Diseases. As part of our membership of the Rare Diseases Forum in England and the Rare Diseases Implementation Oversight Group in Scotland we ensure that the patient perspective is front-and-centre of discussions around implementation. We are also actively engaged in the development of NHS England’s rare disease strategy implementation plan.
Alongside the SHCA’s bilateral work with NHS and government partners, we carry out our own work programme, determined by our members’ views on the most pressing issues facing patients living with rare and complex conditions. The SHCA’s work is currently centred on three priorities: patient