Latest News: Information

Neuro Numbers: The Neurological Alliance Report

14 March 2019 / Posted in: Information, Support

This new report highlights data including that more than one in six people in England are living with one or more neurological conditions, including SMA. It's being used to call for greater prioritisation of neurology by the health and care system.

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DCP Looking for Families To Be Part of Secret Life Of Us Media Campaign

13 March 2019 / Posted in: Information, Support

As part of the Secret Life of Us campaign, the Disabled Children’s Partnership are looking for families of disabled children who would be willing to speak, as part of a media campaign, about the impact on daily life and the need for financial and other support.

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Study to Explore the Quality of Care Received by Children and Young People on Long-Term Ventilation

11 March 2019 / Posted in: Information, Support

This study is currently being conducted by NCEPOD about the quality of care received by those aged 0-24 years on long-term ventilation (including non-invasive). They are looking to hear from both patients and parent carers for their views.

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Neurological Alliance Patient Experience Survey

11 March 2019 / Posted in: Information, Support

The Neurological Alliance is running this survey to find out about the care and treatment for neurological conditions (this includes SMA). The purpose is to provide information which can help them monitor and improve the future quality of health services and social care for people with neurological conditions.

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MDUK's Benefits and Grants Survey

31 January 2019 / Posted in: Information, Support

Muscular Dystrophy UK's ‘Focus on Disability Benefits’ campaign aims to ensure that people with neuromuscular conditions can access fair and informed assessments for support that meets their needs. This survey is about your experience of the application process for any benefits you receive.

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New Campaign: Make Cervical Cancer Screening Accessible For Disabled Women

24 January 2019 / Posted in: Information, Support

Fiona Anderson, a wheelchair user who has a muscle-wasting condition, has set up a petition to ensure disabled women have equal access to cervical cancer screening - this includes by making hoists available at every NHS medical centre.

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Ask Your MP to Speak in Debate on Support for Children with Life-limiting Conditions

24 January 2019 / Posted in: Information, Support

Together for Short Lives are asking people to write to their MPs to ask them to speak in this debate. The meeting will take place at 9:30am on Tuesday 29 January 2019 in Westminster Hall.

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Online Survey for Paediatric Physios re SMA

18 January 2019 / Posted in: Information, Support

This international research will give a better understanding of how physical therapy services are provided to those with SMA and will help give further information about issues that may be relevant to improving the education around this. Closes 1st March.

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Trailblazers Body Image Survey

07 January 2019 / Posted in: Information, Support

Trailblazers want to hear from young, disabled people about how they feel about their 'body image'. By this, they mean how individuals feel about the way they look and how this affects confidence, self-esteem and mental wellbeing.

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CQC Survey: People's Experiences of Care

04 January 2019 / Posted in: Information

The Care Quality Commission is running a survey to find out people's different experiences of care. By sharing your experiences, you’ll help them to improve the overall quality of care in England.

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