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Last Updated 1st July 2024


The Adult Advocacy Steering Committee 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.


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Please email with any issues / topics you would like to be discussed.

Image shows an adult man, who has SMA, sitting in his powerchair. He is next to his friend. They're both on a powerboat.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: