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About the Organisation
Spinal Muscular Atrophy Support UK is a national charity. We support and empower those affected by Spinal Muscular Atrophy. We advocate for better services and raise public awareness in partnership with the health, social care and research communities.
What we do:
- We offer phone, email and web based information and support
- Our outreach workers make home visits across the UK to families and individuals affected by SMA
- Our information is accredited by the Information Standard
- Our Peer Support Network is made up of volunteers with personal experience of SMA
Our users say:
"I would like to send a huge thank you for the support that you provided us with through such a tough time in our lives"
Type of service
More About The Organisation
Organisations & Services Details
Who is your service for?
How do you communicate?
Do you have opening times?
|Monday||From 09.00||To 15.30|
|Tuesday||From 09.00||To 15.30|
|Wednesday||From 09.00||To 15.30|
|Thursday||From 09.00||To 15.30|
|Friday||From 09.00||To 13.00|
AIM for the Stars
Accessible Places - 1 Star
Our buildings, or the venues we use, can be accessed easily by public transport.
We ensure there are safe pedestrian routes to our building or the venues we use.
We ensure there is good lighting in our building, or the venues we use.
We are easily contacted by phone, email or letter.
Accessible Places - 2 Stars
We have adapted stair for those with mobility needs.
We have parking nearby that can be used by Blue Badge holders.
We publish information on how accessible our building, or venue, is to the people who use our service in advance.
We offer home visits or visits in the community to the people who use our service.
Accessible Places - 3 Stars
We have wheelchair suitable lifts that are easy to access and support access to different parts of the building/venue.
We have disabled parking on-site.
We have an understanding how assistive devices work and are able to support people who use them.
We offer visits to the people who use our service in a location that is convenient to them.
Accessible Places - 4 Stars
We have assistive listening devices available, or can easily access them.
We have a quiet space or room for people to use if they need it.
Our buildings, or the venues we use, are fully accessible to wheelchair users.
We visit the people who use our service at times that are convenient to them.
Accessible Places - 5 Stars
There is a fully accessible toilet, with a hoist and adult changing facilities.
Inclusive Practice - 1 Star
We have an awareness of different types of special educational needs and disabilities.
We welcome children and young people with different special educational need and disabilities, and their families.
Inclusive Practice - 2 Stars
We have experience of providing services to children and young people with special educational needs or disabilities, and their families.
We communicate effectively with families and support children and young people to transition into our service.
We have an accessibility plan to help us anticipate the needs of disabled people who might want to use our service.
Inclusive Practice - 3 Stars
Our staff have specialist training to meet the special educational needs or disability of the people who use our service.
We use personalised planning to ensure children with special educational needs and disabilities, and their families are able to use our service.
We seek advice and support from other professionals, if we need it.
Inclusive Practice - 4 Stars
We have a lead in our service that promotes inclusive practice in our service and they are suitably qualified.
Our staff have specialist training that is recent, up to date and relevant to the people who use our service or may want to.
Inclusive Practice - 5 Stars
We have staff trained in the communication systems commonly used by the people who use our service.
All our staff, including our management committees, have an in depth understanding of the barrier to inclusion for people with special educational needs and disabilities (and do everything we can to remove these barriers).
Meaningful Participation - 1 Star
It is clear what your service does and how it works to the people who use (or might use) your service.
The people who use your service know how to get involved with the development of your service.
Feedback is used meaningfully in the development of the service.
Meaningful Participation - 2 Stars
It is clear how decisions are made about your service and how the service is being developed.
You use different ways to engage your service users to gather their views on the service and provide information on how their feedback is used to develop the service.
You ask the opinion of the people who use your service on some aspects of your service.
Meaningful Participation - 3 Stars
Staff choose an area of the service to develop and work with the people who use the service to share decision-making.
All people who use your service are given the opportunity to participate in shared decision-making.
It is clear what decisions and areas of development have been done through shared decision-making.
The people who use your service contribute to the development of your service, including staff.
Meaningful Participation - 4 Stars
People who use your service are empowered and encouraged to approach the service directly with ideas for how the service could be developed.
There is a clear, well publicised pathway for how people who use your service can initiate and direct ideas and your service have anticipated this.
The people who use your service have a role in the development of your service, including staff
The people who use your service have some representation in the management of the service and make meaningful contributions to the development of the service.
Meaningful Participation - 5 Stars
People who use your services have ideas for developing parts of the service and staff offer advice and support to them.
People who use your service share decision-making on a strategic level, ensuring the service is representative of their priorities.
The ways in which people who use your service have led developments or are involved strategically is clearly publicised and these opportunities are open to everyone.
There is an open culture of valuing and celebrating the participation of the people who use your service.
Organisation last updated on 10/01/2017