Tel: 01789 267520

Consultations, Campaigns & petitions

Please be aware that we do not necessarily agree with the requests posted here - but we think it is your right to see them and decide if you would like to respond. If you do, please be clear that you are speaking personally and not on behalf of SMA Support UK.

You may wish to see our advice checklist before deciding to participate:

Changing Places toilets - Join the Campaign!

If you want to see a Changing Places toilet near you, setting up a local campaign group to gather support and lobby decision-makers in your area is an effective way of making that change happen.

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The 'Secret Life Of Us' Campaign

The Disabled Children’s Partnership are launching the 'Secret Life of Us' campaign on 28th June, joining forces to fight for better health and social care for disabled children, young people and their families in England.

Find out more

Can you Help Describe the Experience of Living with SMA?

Individuals with SMA and caregivers are wanted by Adelphi Values to take part in a one-hour phone interview about their experience of SMA. Participants will receive £50.

Find out more

Care Quality Commission Seeking Responses To 'Share Your Experience' Initiative

They want to hear from people living with a disability on their experience of using the services that they regulate; hospitals, GP surgeries, care homes, care at home services, for example.

Find out more

Housing for Disabled People - Have Your Say

The Equality and Human Rights Commision want to hear from disabled people to understand whether the availability of accessible and adaptable housing, and the support services around it, fulfils disabled people’s rights to live independently.

Find out more

Campaign to Improve School Transport

Contact a Family have launched their biggest inquiry into school transport for disabled children, and they want to hear from you. Take part in their survey to share your experiences, both positive and negative.

Find out more and take part in the survey

Turn2us - 'No Cold Homes' Campaign

Turn2us' poverty campaign, No Cold Homes, is running throughout the Winter and they are promoting the support available for people who can’t afford to heat their homes.

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Can you Help Describe the Experience of Living with SMA? 

Individuals with SMA and caregivers are wanted by Adelphi Values to take part in a one-hour phone interview about their experience of SMA. Participants will receive £50.

Read more

Views Sought On The Use Of Non-Invasive Prenatal Testing (NIPT)

The Nuffield Council on Bioethics is thinking about the ethical issues raised by NIPT and would like to talk to people over 18 who have SMA about their views on current and future uses of NIPT.

Find out more

Petition To Change Law

Steven has SMA Type 2 and is abroad for a year as part of his University studies. As he is leaving the UK for more than 13 weeks, the DWP has told him that after that time he is no longer entitled to his motability vehicle. 

Sign his petition requesting a review of this regulation here.

Call For Evidence

This is your opportunity to have a say on disabled people's rights under the UN Convention on the Rights of Persons with Disabilities.

In 2017 the United Nations Committee on the Rights of Persons with Disabilities will examine how well the UK government is doing at promoting, protecting and ensuring disabled people’s human rights. Disability Rights UK is helping to carry out this task and is seeking evidence and insight from disabled people and their organisations in the UK. You can contribute by completing an online survey.

Find out more

Disabled Facilities Grants Petition Launched

Following discoveries made by Disability United's Editor, Fleur Perry, a petition has been launched to make sure that all disabled people can have the adaptations they need.

Find out more

PIP: Second Independent Review Call For Evidence

The Department for Work and Pensions has appointed Paul Gray to undertake the second independent review of the Personal Independence Payment (PIP) assessment. This consultation closes on Tuesday 6th September 2016 at 5:00pm.

View Consultation

Campaign To Increase Carer’s Allowance Earnings Threshold

Contact a Family is asking people to sign an open letter calling on the government to make this increase to stop carers losing out on support.

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How Can The Government Improve Help For Carers?

The Department of Health wants to hear from anyone who cares for a family member or friend, anyone who has someone to care for them and from professionals. This is to help them develop a new strategy.

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Halving The Disability Employment Gap

The All Party Parliamentary Group on Disability invites written submissions to inform its inquiry into how the Government can fulfil this pledge. Closing date 4 July 2016.

Find out more

Survey To Identify Gaps In NHS Care

MDUK is gathering information about what support people with muscle-wasting conditions are accessing, to help them identify issues to assist with campaigning for better care.

Take the Survey

Young Disabled Volunteers Aged 18-29 Wanted For 'I Can Make It' Campaign

Join people like Jasmine in this Disability Rights UK campaign funded by Comic Relief. Run by and for young disabled volunteers, this project aims to smash barriers to employment and create better job opportunities. You can find out more about the campaign by clicking on the link below:

Find out more

Turn2Us Launches Its Benefits Aware Campaign

Find out what support you’re entitled to today and read the results of their research which show that 25% of people with a disability feel the welfare changes make it difficult to apply.

Find out more

Petition to make Nusinersen available

This petition has been set up by a parent who wants to see this drug made available to children with SMA at the earliest possible time.

Sign the petition

Read the latest report from the clinical trials