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:

How important is it for people affected by SMA to have access to psychological support? Have your say by 27th April

We want to make sure the views of people affected by SMA are heard by the APPG for MD which is conducting a 6-month inquiry assessing the need for, and availability of, psychological support for people affected by muscle wasting conditions. If you have SMA, are a relative of someone with SMA or have been bereaved by SMA, please complete one of our surveys.

Find out more

Petition: PIP should be administered and decided by the NHS, not the DWP/contracting firms

We have been asked to share this petition that is recommending the Government to put the decision-making for PIP under the NHS and not with DWP.

The petition currently stands at over 7,000 signatures and the organiser is looking to get 100,000 signatures by June.

Find out more

Petition to Close School Transport Loophole

Contact have found that more and more disabled children are being refused school transport or being charged for it, as councils exploit a loophole in the law. They are calling on the government to close this loophole.

Find out more and sign the petition

Petition to try and fast-track the approval of Spinraza in Australia

We have been asked by a parent in Australia to share a petition by SMA Australia to try and fast-track the approval of the new treatment Spinraza on to their Pharmaceutical Benefits Scheme. If you sign the petition, you will be sent an email for confirmation – you must click on this link for your signature to be recorded. You can find out more and sign by clicking on the link below:

Find out more

Petition to End Prescription Charges for People with Long-Term Conditions

England is the only part of the UK that charges for prescriptions. It's time that everyone with a long-term condition has access to free prescriptions. Sign the prescription charges coalition petition.

Sign the petition

Demand Biogen to reduce the price of Spinraza life-saving treatment for SMA Worldwide

Kiana has asked us to share this petition with you. You can find it here.

Scottish Medicines Consortium Assessment

The Scottish Medicines Consortium (SMC) will shortly be assessing the treatment nusinersen (SpinrazaTM) to decide whether it can be used by NHS Scotland for the treatment of SMA Types 1, 2 and 3. We have been invited to make a Patient Group Submission. We need your help to do this.

Research survey seeking views on sport participation for non-active disabled people following the London 2012 Paralympics

If you would like to voice your opinion and assist a third year PhD student, please read more.

Read more

Petition: Supermarkets To Commit To Providing Changing Places Toilets In Stores Within 18 Months

A petition has been set up calling for the 6 main supermarket chains to commit to providing Changing Places toilets in their stores within the next 18 Months. Please consider signing this petition.

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Rare Disease UK's Survey

Do you have a rare or undiagnosed condition? OR are you a parent or carer of someone with a rare or undiagnosed condition? Complete Rare Disease UK's survey to share your thoughts and experiences about the emotional impact of living with a rare or undiagnosed condition.

Find out more

Disabled Children's Partnership Survey

The Minister for Disabled People has asked the Disabled Children’s Partnership to help her gather the views of disabled children and young people.

Take the survey

Muscular Dystrophy's 'FastTrack' Campaign

Muscular Dystrophy UK are campaigning for faster access to specialist treatments, including Spinraza for SMA. You can find out more and support the 'FastTrack' Campaign by clicking on the link below.

Read more

Campaign to Save Local Short Breaks Services

Add your name to the DCP's letter calling on the Government to review the funding and availability of short breaks services.

Read more

Tell the PM to Stop Universal Credit Cuts

Contact a Family are concerned that around 100,000 parents with disabled children are at risk of being worse off on Universal Credit. Sign their petition to the prime minister to reverse cuts to child disability payments under Universal Credit.

READ more

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.

Read more

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.

Read 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.

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.

Find out more

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.

Find out more

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