The Neurological Alliance Expand The Neurological Alliance is a coalition of more than 80 organisations in England working together to transform outcomes for the millions of people in England with a neurological condition. We work closely with The Neurological Alliance to coordinate policy and ensure that dystonia is highlighted in everything they do especially using patient stories and experiences. Every 2 years they run a national neurology patient survey, which many of our members have responded to in the past. The information collected in surveys like these provide an invaluable data source for us to form evidence. Through our links with The Neurological Alliance, we are actively involved with the National Neuro Advisory Group (NNAG). This is a joint forum for different organisations across the health sector, such as NHS England, Public Health England, clinicians, academics, and patient voice organisations, to come together and ensure alignment of initiatives and service improvements. Through this group, we have been actively involved in developing the optimum clinical pathway for movement disorders alongside Parkinson’s UK and The Huntington’s Disease Association.
Northern Ireland Neurological Charities Alliance Expand The Northern Ireland Neurological Charities Alliance (niNCA) represents and provides a voice on behalf of people living with a neurological condition in Northern Ireland. Their focus is to ensure that neurological services are given priority at all levels of health and social care planning. We support initiatives led by niNCA by engaging with members and people living with dystonia in Northern Ireland.
Neurological Alliance of Scotland Expand The Neurological Alliance of Scotland is an umbrella body of organisations that represent people with a neurological condition and those who support them. They inform policy, raise awareness and support improvements in services aiming to ensure that the experiences of people with neurological conditions - and those around them - are recognised. Through our contributions to publications and consultations with The Neurological Alliance of Scotland we ensure the voice of dystonia is included when raising issues directly with the Scottish Government, NHS bodies and other groups.
Wales Neurological Alliance Expand The Wales Neurological Alliance is a focused and purposeful forum of not-for-profit organisations and groups representing many thousands of people affected by neurological conditions in Wales. We work closely with the alliance to ensure that dystonia is highlighted in everything they do especially using patient stories and experiences. We have been represented on the Cross Party Group on Neurological Conditions at the Welsh Senedd for many years. Through this we have directly submitted evidence and enabled members to provide their views through surveys.