Introduction
This document has been published by the Department of Health, Social Services and Public Safety, referred to below as “the Department” or “DHSSPS”, in order to consult with patients, stakeholders and the general public about its response to the 51 Commitments set out in United Kingdom Strategy for Rare Diseases published in November 2013 referred to below as the “UK Strategy”. The Department’s response in the form of this document is the ‘Draft Northern Ireland Implementation Plan for Rare Diseases’, referred to below as “the draft NI Plan”.
On 8 June 2009, the European Council issued a Recommendation on an Action in the field of rare diseases (2009/C 151/02), obliging Member States to put in place a plan or strategy on rare diseases by 2013 to integrate all current and future initiatives at local, regional and national levels in the field of rare diseases.
Following UK-wide public consultation on proposals for a UK Strategy for Rare Diseases, the Department of Health in London (DHL) published a summary of the consultation responses in November 2012. Following consideration of the responses a Working Group, chaired by DHL, finalised the UK Strategy for Rare Diseases, in conjunction with a Rare Diseases Stakeholder Forum, which included representatives from Northern Ireland. The UK Strategy was published in November 2013 following approval by the Health Ministers from the four countries of the UK who have agreed to work to achieve the Commitments in the UK Strategy by 2020.
Following publication of the UK Strategy, Scotland, Wales and Northern Ireland are producing local implementation plans whilst England is setting out its intentions across several of its high level frameworks and strategies. Each country will detail how they plan to address the Strategy’s 51 Commitments and strategically direct local services in future years.
The Department will work with the Health and Social Care sector, other Government Departments, local government, voluntary and community organisations, researchers and industry to progress these commitments for people living with a rare disease in Northern Ireland.
The preparation of the NI draft Plan by the Department has been informed by the Northern Ireland Rare Diseases Stakeholder Group, an ad-hoc group established and chaired by the Department to help steer the development of the NI Plan, which comprises representatives from the:
- DHSSPS policy directorates with responsibility for policy related to rare diseases;
- Health and Social Care Board (HSCB) which is responsible for the planning, commissioning and delivery of health and social care services, and support to people living with a rare disease and their carers;
- Public Health Agency (PHA) which is responsible for health and social wellbeing improvement ; health protection; public health support to commissioning and policy development and HSC research and development.; and,
- Medical professions, universities and service user and carer groups who provide care for and conduct research into rare diseases and provide support to those affected by rare diseases.
The above stakeholders play key roles in the policy, planning, commissioning, delivery, research into rare diseases and the provision of support to people living with a rare disease.
The draft NI Plan identifies short, medium and long term actions designed to improve services for people living with rare diseases in Northern Ireland during the period 2014 to 2020.
The actions address the five main objectives in the UK Strategy:
- empowering those affected by rare diseases;
- identifying and preventing rare diseases;
- diagnosis and early intervention;
- coordination of care, and
- the role of research.
This NI draft Plan provides an agenda for progressing the 51 Commitments in the UK Strategy in a way that takes account of our local Northern Ireland context whilst encouraging and enabling us to learn and benefit from best practice in health and social care provision nationally and at the European and international levels. The draft Plan also aims to ensure that Northern Ireland can contribute to and benefit from information sharing and research which are important disciplines for better understanding and developing preventative measures and treatments for rare diseases; and that our universities, clinicians, patients, researchers and industry can participate in and benefit from the medical research and development process across the UK in Europe and internationally.
