Are you an adult living with SMA in the UK passionate about advocating for improved clinical services for the adult SMA community across the UK?
SMA UK would love you to join Portia Thorman, Head of Advocacy and Community, Vanessa Christie-Brown, Project manager of SMA Care UK, and Luis Castro E Canto, adult advocate living with SMA, at one of our in-person meetings. We will also be joined by expert SMA clinicians. These are in London and Manchester. You will be reimbursed for your time and your travel.
Why do we need to hear from adults?
The SMA Care UK project is based on clinical research and patient perspectives. It aims to create one agreed standards of care document for all living with SMA. It aims to be a document that can and will be used to advocate for better care and services. To be a useful tool it must recognise that the needs of adults are not the same as for children. it must take a holistic approach to adult care. One that fosters a less medicalised life, enabling individuals to life as independently as possible.
What do we want to find out?
To advocate effectively for improved services for adults, It is important to fully understand:
- What do adults living with SMA need from clinical support services?
- What can clinicians across the UK learn from the varied day-to-day care and management practice and experiences of adults living with SMA?
- What are the gaps in service provision and how can the systems be improved?
Event Details:
Manchester:
📅 17th January
🕙 10:00 AM – 4:00 PM
📍 Core Technology Facility,
The University of Manchester,
46 Grafton Street, Manchester, M13 9WU
Register for Manchester here
London:
📅 28th February
🕙 10:00 AM – 4:00 PM
📍Unity Works Café, Greenwood Centre,
37 Greenwood Place,
London, NW5 1LB
Register for London here
