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:

New Petition: Funding Spinraza Treatment for those who have SMA

We've been asked to share another petition that's been set up, about the funding of Spinraza for all who have SMA.

Sign the petition

Study on the Main Swallowing Risks for Those who have SMA

An Italian Speech and Language Therapist has set up this study and wants to hear from families affected by SMA. She wants us to share her study here in the UK to increase the total number of responses and so make her research more holistic.

The original study has been written in Italian, but when you click through the link it should be translated into English by Google - please therefore bear in mind that some of the language sounds a little unusual because it's been directly translated.

If you have any questions, please email:

Take the survey

MDUK's Benefits and Grants Survey

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.

Find out more

New Petition To Make Nusinersen Available On The NHS

We have been asked to share this petition by Shakil Malji, whose daughter has SMA Type 1, about campaigning for nusinersen to be made available on the NHS. You can find out more and sign the petition by clicking on the link below:

Find out more

New Campaign: Make Cervical Cancer Screening Accessible For Disabled Women

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.

Find out more

Online Survey for Paediatric Physios re SMA

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.

Find out more

Urgent request: short survey to assist with ongoing negotiations with NICE re access to nusinersen

We are facilitating finding out more about the financial and work-related impact of living with SMA Type 1, 2, 3 or 4, for unpaid carers in the UK. This survey may be completed by the person with SMA, partners, parents / carers, or together. Closing date for the survey is 9am on Monday 7th January 2019.

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Call for Expressions of Interest: Patient Representatives wanted to participate in PARADIGM Project

PARADIGM's objective is to develop processes and tools to guarantee patient engagement in three key decision-making points in medicines research and development. Closing date for applications is 28th December.

Find out more

Do you have experiences on employment that you want to share? 

Trailblazer's Employability Officer, Emma Vogelmann, has been looking into the issues and solutions surrounding working as a disabled person. In March, Trailblazers will be launching a report summarising the findings of the investigation they have done around issues of employment, and outlining solutions for both employers and disabled people.

If you have experiences on employment that you want to share, please email: 

Have you visited a genetic service within the NHS? Could you share your opinions for research?

Researchers are conducting a study to explore people’s views about how patient data could be used as part of future genomic medicine services in the NHS.

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ORR Improving Assisted Travel Consultation

A consultation being run by the Office of Rail and Road (ORR) sets out proposals to change the Disabled People's Protection Policy (DPPP) Guidance for train and station operators on how to write their policies for helping disabled people to travel by rail. The closing date for responding is 18th January 2019.

Find out more

Petition To Push For Access To Spinraza in Poland

We have been asked to share this petition on behalf of someone who has SMA and lives in Poland. 

You can read more and sign the petition here.

Survey About the Impact of Physiotherapy

An A-Level student is running this survey to find out to what extent physiotherapy improves the quality of life for those with SMA compared to other care pathways.

Read more

Consultation About Spinal Muscular Atrophy UK's Priorities

We are now starting to work out priorities for the new organisation, including how and when the funds we hope to raise should be spent. We are very keen to hear the views of as many people in the SMA Community as possible. The survey closes on 11th November.

Find out more

NICE Announcement on Nusinersen

Nusinersen not recommended for funding by NICE is the devastating decision for so many, announced today. One glimmer of hope, however, is that it does leave the door open for a Managed Access Agreement. Comments are needed by 5th September.

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Petition Launched to Fund Lifeline Care for Seriously Ill Children

Together for Short Lives has launched an online petition calling on the Prime Minister to use some of the recent 3.4% NHS funding boost to fund lifeline care for seriously ill children.

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New Report By Working Families

Combining work and family life is a complex juggling act for all parents. But for parents of disabled children, the challenges are greater still. This new report highlights how parents of disabled children are struggling to hold down vital jobs.

Find out more

Petition to End the Care Crisis

After surveying nearly 4,000 adults of all ages who need care or who look after someone with care needs, the Care and Support Alliance (CSA) discovered that people are unable to get the basic care and support they need. Add your voice to their campaign and sign the petition.

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Campaign To Provide Cough Assist Machines

Add your voice to this campaign calling on NHS commissioners in the West Midlands to provide life-saving cough assist machines to people with muscle-wasting conditions.

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Extending Rights to Personal Health Budgets

This survey seeks views on extending specific groups rights to an integrated personal budget (e.g.people who access wheelchair services whose posture and mobility needs impact their wider health & social care needs) and on the potential to incorporate additional funding streams into that budget.

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Access to Psychological Support - Your Views

Thank you to those of you who completed our surveys. We have forwarded the results and your comments to MDUK so that they can be incorporated into the report they are preparing for the APPG 6-month inquiry. To see the results of the surveys, or if you are seeking emotional support, please click on the link below:

Find out more

Survey about Family Finances

Contact is calling on family members who care for children and young people with additional needs or disabilities to take part in important research about family finances.

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.

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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.

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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.

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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.

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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.

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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:

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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.

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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