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 UK.
You may wish to see our advice checklist before deciding to respond or participate:
Study to Explore the Quality of Care Received by Children and Young People on Long-Term Ventilation
(Posted: 11th March 2019)
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. Closing date: 30th April.
Neurological Alliance Patient Experience Survey
(Posted 11th March 2019)
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. Closing date: 22nd March.
Family Attitudes to Genome Editing for Prevention of Heritable Disorders
(Posted: 8th March 2019)
This study involves an online survey for people aged 18 or over who either have a genetic condition themselves, or have someone in their family who has / had a genetic condition. It's being led by University College London with a closing date of 30th May.
Study on the Main Swallowing Risks for Those who have SMA
(Posted: 11th February)
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: firstname.lastname@example.org
MDUK's Benefits and Grants Survey
(Posted: 31st January 2019)
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.
New Campaign: Make Cervical Cancer Screening Accessible For Disabled Women
(Posted: 24th January 2019)
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.
Online Survey for Paediatric Physios re SMA
(Posted 18th January 2019)
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.
Urgent request: short survey to assist with ongoing negotiations with NICE re access to nusinersen
(Posted: 17th December 2018)
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.
Call for Expressions of Interest: Patient Representatives wanted to participate in PARADIGM Project
(Posted: 13th December 2018)
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.
Do you have experiences on employment that you want to share?
(Posted: 14th December 2018)
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: email@example.com
Have you visited a genetic service within the NHS? Could you share your opinions for research?
(Posted: 5th December 2018)
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. Study closes 14th January 2019.
ORR Improving Assisted Travel Consultation
(Posted: 19th November 2018)
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.
Petition To Push For Access To Spinraza in Poland
(Posted: 1st November 2018)
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
(Posted: 24th October 2018)
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. Survey closes 18th December.
Consultation About Spinal Muscular Atrophy UK's Priorities
(Posted: 9th October 2018)
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.
NICE Announcement on Nusinersen
(Posted: 13th August 2018)
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.
Petition Launched to Fund Lifeline Care for Seriously Ill Children
(Posted: 24th July 2018)
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.
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.
Petition to End the Care Crisis
(Posted: 12th June 2018)
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.
Campaign To Provide Cough Assist Machines
(Posted: 26th June 2018)
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.
Extending Rights to Personal Health Budgets
(Posted: 4th May 2018)
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. Closes 8th June 2018).
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:
Survey about Family Finances
(Posted: 24th April 2018)
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.
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.
Petition to Close School Transport Loophole
(Posted: 16th March 2018)
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.
You can see a list of previous consultations, campaigns, surveys and petitions, here.