Priorities for Adults
Priorities for Adults
The Adult Advocacy Steering Committee
A group of adults living with SMA share insights and opinions that can be amplified by SMA UK to make real and meaningful change. Experiences and opinions are shared with our partner organisations and other larger disability focused groups so that they are heard alongside the voices of others at both government and local level across all four nations. The voices we hear will shape and add weight to the SMA Care UK project and inform SMA UK’s long and short term strategic planning.
Read more about the group >
Please email Portia.thorman@smauk.org.uk with any issues / topics you would like to be discussed.
Adult Perspectives Workshop 2025
Adult Perspectives Workshops 2025
2025 kicked off with two insightful workshops in Manchester and London, bringing adults living with SMA and specialist clinicians together to discover the adult’s perspectives of clinical care across the UK.
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. 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 live life as independently as possible.
What did we want to find out?
The workshops helped us to understand:
What adults living with SMA need from clinical support services.
What the gaps are in service provisionAdult Perspectives Workshops 2025
The report that will be produced from the two workshops will not only inform the SMA Care UK project but will support SMA UK’s ongoing advocacy work towards improved services for adults across the UK.
‘As an adult living with SMA, the workshop was truly special for me. It was a fantastic opportunity to not only share my own journey as an adult living with SMA, but, just as importantly, to meet and connect with such an inspiring group of people. The sense of community, shared determination, and the drive to make a difference were so uplifting. It’s moments like these that remind me how powerful it is to be part of this network – not just fighting together, but also learning from each other, supporting one another, and pushing for meaningful change. I left feeling more connected, more hopeful, and incredibly grateful for being part of such a strong, supportive network. ‘
Iryna Bernyk, Adult living with SMA
The crisis in care is not a new topic and the pandemic certainly brought its own problems. But there are other causes that the government have overlooked in their ‘Made with Care campaign’.
As we see it, the inability to recruit reliable Personal Assistants (PAs) has three primary causes:
1. The role of a Personal Assistant is not widely understood
The role of a PA differs to that of a carer in a traditional sense. PAs enable disabled people to live independent and fulfilling lives. Its not just personal care. They enable individuals to go to work, to run a business of their own, to go on holiday and take part in sports, to have hobbies and a social life.
2. The rates of pay are too low
The budget allocated to a ‘care package’ funding is only enough to offer a low hourly rate which is insufficient to attract potential PAs. As such, prospective PAs will earn much more through other similar roles such as house cleaning or dog walking, for example.
3. New laws post Brexit prevent disabled individuals from employing PAs from abroad
As you can see on the government website here, care workers can apply for a Health and Care worker visa. However, if you are an individual using direct payments to fund your Personal Assistant’s hours, you are not considered an eligible employer so you can not apply to be a sponsor for a visa application.
How you can get involved
There are several ways you can get involved in supporting our work on this campaign. To find out more, or if you’d like to get more involved, please email our Advocacy Lead, Portia Thorman: portia.thorman@smauk.org.uk
- Share your PA pictures and stories on social media and use the hashtag #ItsNotJustCare
- PA crisis template letter to an MP final draft, copy in office@smauk.org.uk so we know who is helping to further the cause
- Get crafting for Pathfinders: email sarah.rose@pathfindersalliance.org.uk to receive an information pack
- Share all your endeavours with us via email office@smauk.org.uk and tag us in all your social media PA antics!