The Muscular Dystrophy Campaign welcomes the recognition by Health and Social Care in Northern Ireland of the need to develop and improve access to specialist neuromuscular care - as recommended in the McCollum Report.
The UK Strategy applies to the provision of services for people with rare conditions in all four countries in the UK. The plans outlined in the strategy include:
equal access to high quality services for every individual through integrated personal care plans
a patient-centred, coordinated approach to services, specialist healthcare and social care support
supporting specialised clinical centres to provide expert and high quality clinical care to patients, their families and carers
backing education and training programmes that enable health and social care professionals to better identify rare diseases to help deliver faster diagnosis and access to care and support
promoting the UK as a leading location for research into rare diseases
Chair of the Muscular Dystrophy Campaign's Northern Ireland Council, Dr Amy Jayne McKnight, said:
Rare, muscle-wasting conditions often have a devastating impact on health, relationships and family life. Finding expert advice and support on these conditions is a challenge in itself, so the commitment for local support towards 'best-care pathways' in particular is very welcome.
Through recommendations from the All Party Group in the Muscular Dystrophy Campaign's McCollum Report, and ongoing work though the collaborative Muscular Dystrophy Project named in this document, the Muscular Dystrophy Campaign is committed to ensuring that Health and Social Care in Northern Ireland continues to develop care and support for children and adults in Northern Ireland.
For more information and to get involved in our campaign to improve specialist neuromuscular care in Northern Ireland please get in touch on 020 7803 4839 or by email at firstname.lastname@example.org