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Page last updated: May 2022


SMA UK aim to provide support to anyone in the UK affected by SMA. We do this in a number of ways:

  • Our information provision, either in print or on line
  • Our one-to-one support service
  • Working with the SMA Community to create resources by way of podcasts or similar which we then share
  • Advocating on issues which may affect a group of people affected by SMA

When things do not go as planned

We are committed to providing the best possible service to all individuals who contact us to ask for information or support and / or get involved with any fundraising or other activities. However, we recognise that things do not always go to plan. We encourage, respond to and learn from the concerns, complaints and suggestions for improvement individuals make about our organisation and the service / contact they have received from us.

It helps us:

  • Measure how well the needs of the people we support /who support us are being met
  • Identify if we need to improve, change or develop a service
  • Identify if we need to modify our training
  • Measure if we are meeting quality standards
  • Identify what risks there are with what we are doing and how to manage them

We consider a complaint to be any expression of dissatisfaction with our service or our organisation that calls for a response.

  1. We aim to ensure that making a complaint is as easy and transparent as possible
  2. we deal with complaints appropriately and within the agreed timeframe.

How to Make a Complaint

You can make a complaint by phone, email or post to the contact details below.  We prefer to talk to you so that we can resolve your complaint as quickly as possible, so please give your contact details including a telephone number.

If you tell us you prefer your concerns to be dealt with in writing, we will write to you and acknowledge receipt of your complaint, usually within 3 days of receiving it.

What happens next?

We will always try to resolve your complaint straight away and resolve the situation informally.

We aim to fully resolve all complaints and provide you with our response within 30 days of you raising the matter with us.

What we will do:

  • Acknowledge all complaints within three working days
  • Review the complaint in full
  • Investigate thoroughly the issues raised
  • Keep you updated on our progress
  • Communicate a final response within 30 days*
  • Learn from the feedback

*if this is not possible due to the complex nature of the complaint we will tell you the reason why this may take longer to communicate

What if I remain dissatisfied?

In cases where you are dissatisfied with the formal response you have received, you are able to escalate your complaint, within seven days of receiving the response, to the Chief Executive Officer, at the address below or by email

In cases where the Chief Executive Officer is the subject of the complaint, the matter will be referred to the Chair of Trustees.

If we have properly investigated your complaint in accordance with this Policy but you remain dissatisfied with the response from the Chief Executive Officer or the Chair then, whilst you may have the additional rights described in this section, we also reserve the right to notify you that we regard our complaint process as concluded and to decline to communicate further in relation to the complaint, or to consider further complaints linked to the same matters. The Chief Executive, in conjunction with the Board of Governors, will make this decision.

We reserve the right to refuse to consider any complaint that is vexatious, malicious or motivated by discriminatory behaviours and we reserve the right to refuse to consider or to consider further a complaint submitted by a person determined to be an unreasonably persistent complainant.  The CEO, in conjunction with the Chairman, will make this decision.

Your Personal Information

To investigate and administer your complaint it is necessary for us to collect and hold personal information about you. We will hold the information you provide to us securely and use it to help process your complaint.

Updated by SMA UK management April 2022
Approved by the SMA UK Board May 2022

Contact Details:

Chief Executive Officer Chair of the Board of Trustees
Spinal Muscular Atrophy UK,
Unit 9,
Shottery Brook Office Park,
Timothy’s Bridge Road,
Stratford upon Avon,
CV37 9NR
Spinal Muscular Atrophy UK,
Unit 9,
Shottery Brook Office Park,
Timothy’s Bridge Road,
Stratford upon Avon,
CV37 9NR
Email: Email:
Phone: 01789 267520 Ensure email states: ‘attention Chair of Board of Trustees’

1. Controlling and Processing Data

Under the U.K. General Data Protection Regulations (U.K GDPR) 2021, organisations must identify who controls and who processes the data.

Our Data Controllers determine what data / information to collect and how to collect it. At SMA UK, these decisions are made on behalf of our trustees by the managers of the Support Services and Fundraising Teams.

2. Protecting Individual Privacy

We believe that respecting and protecting a person’s privacy is of the utmost importance. We apply the principles of the UK General Data Protection Regulations (U.K GDPR) that came into effect on 1st January 2021, the Data Protection Act 2018, the Freedom of Information Act 2000 and the Privacy and Electronic Communications (EC Directive) Regulations 2003 (PECR) across all our activities. For Data received from the E.U. before 1st January 2021 we also apply the E.U. General Data Protection Regulations (E.U. GDPR).

The principles of the above Acts and Regulations apply across all our activities. How we implement these principles varies depending on the activity e.g. the provision of an information and support service; a fundraising initiative; the recruitment and supervision of employees and volunteers; Trustee business. Team managers are responsible for their implementation and monitoring and report to the Board as required.

The GDPR principles and how we practise them follow:

2.1 Processed lawfully, fairly and transparently

We must have legitimate grounds for collecting and using personal data and be transparent about how the information will be used. People’s personal data must be handled only in ways they would reasonably expect us to use it. This includes giving individuals clear statements about how we use and protect their information. Individuals have a right to ask for a copy of the information we hold about them in our records. Please see:

Appendix 3 Our Privacy Notices
Appendix 4 Lawful Processing
Appendix 5 Support Services Practice

2.2 Collected for specified, explicit and legitimate purposes and not further processed in a manner that is incompatible with those purposes.

We must be clear why we are collecting personal data and what we intend to do with it. We must ensure that if we wish to use or disclose the personal data for any purpose which is different or additional to the original purpose, then the new use is agreed as fair by the owner of the information and / or a senior colleague. Please see:

Appendix 3 Our Privacy Notices
Appendix 6 What information do we share, when and how?

2.3 Adequate, relevant and limited to what is necessary

Any personal data we hold about an individual must be sufficient for the purpose for which we hold it. We must not hold more information than we need. Please see:

Appendix 3 Our Privacy Notices
Appendix 5 Support Services Practice

2.4 Accurate and, where necessary, kept up to date

We must take reasonable steps to ensure that personal data obtained is correct and not misleading and consider whether or when it is necessary to update the information. Please see:

Appendix 3 Our Privacy Notices
Appendix 5 Support Services Practice
Appendix 7 Your rights over your information

2.5 Retained for as long as necessary. Can be archived for statistical purposes but must protect the rights of the individual  

We must keep under review the length of time we hold personal data. This may be for longer in some cases than others depending on the purpose for which the data was obtained. We must regularly review personal data and delete in a secure way information that is no longer needed.

Individuals may at any time request that their personal information is removed. Such requests should be responded to promptly. All database entries should be deleted in a secure manner and hard copy information should be shredded. Please see:

Appendix 3 Our Privacy Notices
Appendix 8 How long are records kept?

2.6 Processed in an appropriate manner to maintain security. Ensures against loss, damage or destruction

We must have appropriate security systems and practices that prevent personal data we hold being accidentally or deliberately compromised.  Please see:

Appendix 9 Our Security Systems and Practices

3. Data Protection by Design and Default and Risk Assessments of new projects

Article 25 of the GDPR outlines that all systems for data processing and storage are subject to assessment of Data Protection by Design and Default. You can read more about what this entails in appendix 10. The practical implementation of how we do this is described in this policy. Additionally, all new projects are risk assessed following the risk assessment process outlined appendix 11.

Appendix 10 Data Protection by Design and Default
Appendix 11 Data Protection Impact Assessment

4. Protecting the interests of SMA UK

Employees and trustees must not disclose to any un-authorised person any confidential information about the interests or business of the charity, its staff, trustees, beneficiaries, funders or other partners.

A non-exhaustive list of the information which SMA UK considers confidential, unless such information is already legitimately in the public domain, includes information held in relation to:

  • Funding applications, grant applications, joint ventures, project initiatives, strategic plans etc.
  • Finances
  • Security arrangements
  • Individual salaries or other confidential information relating to contracts of employment.

When employees or trustees leave SMA UK, they must immediately return any files, documents reference books and other papers relating directly or indirectly to the charity or its staff, beneficiaries, funders or other partners. Any emails and electronic documents relating to the organisation should be deleted from personal computers.

Employees and trustees must be particularly alert to requests from the press or other media and should refer such requests to the Support Services and Fundraising Managers before disclosing any information in response to such enquiries.

Confidential and sensitive information is restricted to those who need the information in the course of their work for the organisation. Any restricted information must not be disclosed to anyone else, whether inside or outside the charity. Restricted information, whether communicated orally, electronically or in writing should always be identified as ‘Confidential’ and where appropriate ‘for (recipient’s) eyes only’. Such information might include:

  • Proposals or plans for the future
  • Special forthcoming events or projects before they have been announced
  • Financial and statistical information
  • Sensitive business information
  • Sensitive personal information
  • Information relating to employees, volunteers and staff including applicants for positions, leavers or joiners prior to any public announcement.

5. Summary of General Rules – Staff, Trustees and Volunteers

All employees, turstees and any volunteers are required NOT to:

  • Leave confidential information (in paper or electronic form) where it is easily visible in the office or elsewhere. THINK PRIVACY!
  • Use computer software or programmes or any electronic equipment unless they are authorised by SMA UK
  • Give any press interviews or statements on or off the record without first discussing this with the SMA UK’s managers
  • Write personal letters on SMA UK’s headed paper or under SMA UK’s banner
  • Discuss with others the business of other service users, volunteers, staff, trustees or funders except as strictly required by their job.
  • Conduct confidential conversations (including over the phone) where they may be overheard

Employees and trustees, whether paid or unpaid, who leave the charity will continue to be bound by their obligations of confidentiality even after the termination of their SMA UK post, whatever the reason.

Nothing in this policy will prevent an individual from making a ‘protected disclosure’ within the meaning of the Public Interest Disclosure Act 1998 (i.e. a legitimate, good faith ‘whistleblowing’ disclosure)

Breaches of this policy by employees will be dealt with through the SMA UK’s disciplinary procedures. Breaches by trustees will be dealt with under the process laid down in the trustee code of conduct.

Very occasionally we may introduce a volunteer who has been carefully recruited and received training from our Shared Experiences Coordinator directly to support another member of the SMA community. Training includes the topics of confidentiality and boundaries. They know not to share the personal details of the person / family they are supporting, nor the contents of any conversations and Emails, nor to leave any confidential information (in paper or electronic form) where it is easily visible. They know that this applies during their time as a volunteer supporter and thereafter as well. They know to always check that they have the person’s specific permission before they discuss or do anything on their behalf.  If they have any doubts, they know to ask the Shared Experiences Coordinator, who is there in an ongoing support role, or any member of the Support Services team for guidance.

Volunteers also know that safeguarding of children and adults at risk takes priority over confidentiality.

6. Data Breaches

If a Data Breach Occurs a risk assessment is made immediately, recorded and addressed using our Security Concern or Data Breech Notification Form Appendix 12 using the guidelines laid out in Appendix 12a or 12 b

Appendix 12 Security Concern or Data Breach Notification Form
Appendix 12a Risk Assessment process for the Security of Data
Appendix 12b Risk Assessment process for a Data Breach

7. Making our confidentiality and data protection policy known

All staff and trustees are given a copy of this policy and, where appropriate, any relevant implementation guidelines, when they join the Trust. They have an opportunity for discussion with their manager or mentor.


If parents/carers of a child with SMA or an adult with SMA disagrees with their medical team re: management and treatment options

Management and treatment of SMA is guided by the 2017 International Standards of Care1,2.This can involve complex information and decision making and there may be times when the parents/carers of a child with SMA or an adult with SMA does not agree with the advice of their medical team. At such times, it is vital that all involved have the opportunity to clearly express their views and have them considered carefully. The parents/carers/adult must have access to appropriate advocacy support to ensure the reasons for their position are clearly expressed. This is an area of advocacy expertise we do not possess.

We will:

  • acknowledge the distress that any disagreement would cause both the parents/carers/ adult and medical team
  • express that, disagreements between parents/carers/an adult and the medical team can sometimes be the result of misunderstandings and highlights the need for clear empathetic communication on both sides
  • ensure that anyone in this position has contact details for the Patient Advocacy and Liaison Service (PALS) and knows that, through them they can, if necessary, access the hospital’s complaints service / ethics committee, human rights lawyers etc.
  • express the hope that the parents/carers/adult and medical team will be supported to express their views, perhaps through a multi-disciplinary clinical ethics committee of clinicians, social workers, lawyers, chaplains, ethicists and lay persons who are not involved in the direct care of the patient.
  • advise that by allowing each party to voice their concerns and to clarify their values, the consultation process itself usually helps to ease the tension between the parties.
  • advise that we would not take sides, either in public or privately, between parents/carers/an adult and clinicians
  • emphasise that if this situation becomes public, we never talk publicly about individual cases
  • continue to offer emotional support to the parents/carers/adult during this time

July 2018

1. Eugenio Mercuri, et al., Diagnosis and management of spinal muscular atrophy: Part 1 Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscular Disorders (2017), doi: 10.1016/j.nmd.2017.11.005 

2. Richard S. Finkel, et al., Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organs systems; and ethics, Neuromuscular Disorders (2017), doi: 10.1016/j.nmd.2017.11.004

Last reviewed April 2022 
Date of next review April 2023 by CEO. 


At SMA UK we take inclusion and diversity seriously. We want SMA UK to be a place where everyone feels welcomed to work, volunteer or seek support.  SMA UK is committed to maintaining and supporting a culture of equality, diversity and inclusion in its workforce and in the delivery of its services, ensuring that:

We are firmly committed to meeting all expectations under the Equality Act 2010 and other relevant regulations.

We commit to avoiding any discrimination and particularly on the grounds of age, gender reassignment, disability, ethnicity, marriage or civil partnership, pregnancy or maternity, religion or belief, sex and sexual orientation.

We aim to go beyond this and create an equitable environment for all our staff, volunteers and service users regardless of socioeconomic status, refugee status or any other characteristic therefore, the following forms of discrimination are prohibited under this policy and are unlawful:

  • Direct discrimination: treating someone less favourably because of a Protected Characteristic
  • Indirect discrimination: a provision, criterion or practice that applies to everyone but adversely affects people with a particular protected characteristic more than others and is not justified.
  • Harassment: this includes sexual harassment and other unwanted conduct related to a protected characteristic, which has the purpose or effect of violating someone’s dignity or creating an intimidating, hostile, degrading, humiliating or offensive environment for them.
  • Victimisation: retaliation against someone who has complained or has supported someone else’s complaint about discrimination or harassment.
  • Disability discrimination: this includes direct and indirect discrimination, any unjustified less favourable treatment because of the effects of a disability, and failure to make reasonable adjustments to alleviate disadvantages caused by disability. This can also include discrimination by perception, discrimination by association and discrimination arising from disability.

All employees, trustees and volunteers have a responsibility to observe this policy by treating everyone they come across with dignity, fairness, equality, respect and autonomy. This is in both their everyday use of language and in all their actions. This policy also extends to our partners and suppliers and will affect whether these relationships continue.

Our Services 

1.1      Information 

SMA UK’s information services are open to anyone who wants to find out about Spinal Muscular Atrophy.

We seek to reach all communities and raise awareness of our services to all.  Even though English remains our primary language, we acknowledge that there are many individuals in the SMA community for whom English may not be their first language. As a result, we endeavour to respond to individual requests for multi-language information on an individual basis as appropriate.

We continue to improve access to our information website pages and publications (see below).

1.2      Support 

SMA UK’s support services are open to anyone affected directly or indirectly by SMA. We make access to support services and the information we provide as inclusive and accessible as possible, for example:

  • When people requesting support do not speak English as their first language, we seek to work with interpreters.
  • People may contact us via phone, email or text which widens accessibility to anyone with hearing, cognitive or speech impairments.
  • Online conferencing platforms are now widely available and we can also offer support in this way.
  • When required (English as a second language, hearing or speech impairment), we accept calls through a third-party interpreter.
  • Though few people come to our office for support, our downstairs office space is accessible and there is an accessible toilet.

Much of our work is co-designed with people from the SMA Community, and information is reviewed by them, to ensure that our services are designed and delivered with users at the heart.

1.3      Monitoring Equality of Access to our Services 

For the following reasons, we do not keep fully comprehensive statistics regarding people’s protected characteristics:

  • Families tell us that one of the most positive things about asking for support from the organisation is that there is no paperwork, form filling or waiting. People seeking information and support are responded to immediately.
  • Often people seeking support are in distress. Asking for details of their protected characteristics would be intrusive and unnecessary.
  • Our data protection and confidentiality policy follows the principles of the General Data Protection Regulations (GDPR) 2018 which state that we should only collect necessary information. Only limited information about protected characteristics is necessary for giving information and support. For example, we will ask someone to let us know how their religious, cultural or personal beliefs may affect their willingness to accept treatment or services or pregnancy advice.
  • People seeking support sometimes don’t give their names – they just want to talk.
  • We cannot discover the protected characteristics of the people who access our information directly from our website.

We may contact people who have used our services for their feedback. If this is via a survey this would include questions to help us find out more about the diversity of our service users. Similarly, we also conduct advocacy-related consultations. Responses help us review if our services are reaching people equally.

Fundraising Opportunities

SMA UK is mindful that many events it promotes are physically challenging and may not be easily accessible to some people with disabilities. We continue to promote these if they remain popular and successful in terms of their fundraising objective. We will make any reasonable adjustments to increase accessibility. In view of this we endeavour to offer and further develop a wide range of accessible fundraising opportunities and avoid putting any undue pressure on, or take advantage of people in vulnerable circumstances. This could include, for example, speakers of English as an additional language, older persons or disabled persons / person with disabilities.


3.1      Recruitment, Training and Promotion 

SMA UK is committed to equality, diversity and inclusion in all aspects of recruitment and employment. We will seek to achieve this in the following ways:

  1. Continue to develop and implement recruitment and selection processes that are open, transparent and fair and that enable the selection of the best talent
  2. Aim to continue to build a workforce that reflects the communities we serve
  3. Promote an environment free from discrimination, harassment, bullying and victimisation and tackle any behaviour that breaches this in a way that will uphold the dignity of colleagues, service users and stakeholders.
  4. Provide training support and encouragement to all employees so that they can develop their careers and enhance their contribution to the organisation;
  5. Make all employees aware of their responsibility for promoting equality, diversity and inclusion in their work; and
  6. Involve employees and trustees in the development implementation monitoring and review of policies, procedures and flexible working arrangements.

Additionally, where a disabled person is at a substantial disadvantage in comparison with nondisabled employees, SMA UK will ensure it fulfils its duty to take reasonable steps to remove the disadvantage by:

  • changing policies and procedures
  • making changes to buildings to make them physically accessible
  • provision of equipment and human support.

The aim of making reasonable adjustments is to prevent disabled people being disadvantaged compared to non-disabled people so they can achieve their full potential in the organisation.

SMA UK’s decisions regarding advertising, recruitment, selection, promotion, training and development considers the Equality Act’s positive action provisions which mean that it is not unlawful to recruit or promote a candidate who is of equal merit for the specific position to another candidate, if the organisation reasonably thinks the person:

  • Has a protected characteristic that is under-represented in the workforce; or
  • That people with that characteristic bear a disadvantage connected to that characteristic

People with disabilities are currently under-represented in our workforce:

  • Adverts will encourage applications from disabled people.
  • People with disabilities will be shortlisted if they meet the essential criteria of a job.
  • If there are two applicants of equal merit, the post will be offered to the person with the disability.

Our success with this policy will be monitored via our Diversity, Inclusion and Equal Opportunities Monitoring form which all applicants are requested to complete and is collected separately from the recruitment process.  An overall summary of the diversity of applicants is recorded by the recruitment coordinator and reviewed by the Managers and Board Executive.

3.2      Employment Conditions 

These are detailed in individual employment contracts and the Staff handbook and comply with the Equality Act 2010.

3.3     Part-time and fixed-term work 

Part-time and fixed-term employees should be treated in the same way as comparable full-time or permanent employees and enjoy no less favourable terms and conditions (on a pro-rata basis where appropriate), unless different treatment is justified.

3.4     Flexible and remote working 

We are a flexible employer and welcome home-based or remote workers.  Currently no roles have to be worked entirely from the office, so people’s personal preferences and needs will be taken into account when making working arrangements.


4.1     Website, digital and hard copy publications 

We aim for our website to adhere to WCAG 2.1 AA level. We will continue to work on improving access for people with disabilities and impairments to our website and other digital output (for example, our newsletter).

As far as possible, our information publications use plain English and jargon free. They are reviewed by our target audiences.

Information can be accessed digitally. Print versions of information publications are formatted so that they are appropriate to be printed as an A4 document taking care to have a good clear layout, colour contrast and accessible font.

We respond to requests for information to be published in other languages including audio and braille versions on a case by case basis.

4.2     Premises 

Our office is based in Stratford upon Avon. It is an accessible ground floor office with a disabled parking space at the front and a disabled toilet. We will always seek to ensure that we meet the access requirements of any visitors and employees. Toilet facilities are gender neutral.


During induction, all employees are given a copy of this equality, diversity and inclusion policy and are directed to the following publications:

Employees are encouraged to discuss this policy and its implementation during induction and within team and supervision meetings. Other training may be organised.

Policy Breaches

Anyone who has contact with us who wishes to make a complaint about SMA UK can do so using our Complaints Procedure which can be found here. All complaints will be dealt with fairly and respectfully, regardless of the protected characteristic of the individual making the complaint.

Assistance will be given to people who wish to make a complaint but require support or a different format to do so.

All complaints will be taken seriously and will be dealt with promptly and confidentially. If an employee is found to have breached the Equality, Diversity and Inclusion Policy, they may be subject to disciplinary action which could result in dismissal.

All employees, trustees and volunteers should treat each other with dignity and respect whilst at work. Any employee who feels they have not been treated in accordance with this policy is entitled to raise the matter through the Grievance Policy and Procedure or the Harassment and Bullying Policy We encourage informal resolution. Staff wanting independent advice may call the Education Support Partnership, to which we subscribe on behalf of all employees, at any time (see Employee Handbook).

Volunteers who contravene this policy may jeopardise their volunteering relationship with the organisation and will need to discuss their actions with their volunteer coordinator.

Trustees who contravene this policy may jeopardise their position with the organisation and will need to discuss their actions with the Chair of Trustees, or if the issue is with the Chair, then with the Treasurer.

Last updated: 26th March 2023

Anyone joining any of our networks is asked to follow these:

Equality and Diversity: treat all people equally and with respect, irrespective of age, gender reassignment, disability, ethnicity, marriage or civil partnership, pregnancy or maternity, religion or belief, sex and sexual orientation.

Different experiences: what works for one may not be right for another; everyone’s experiences are different and valuable.

Privacy and Confidentiality: the SMA UK Networks are a brilliant way to ask other people questions, or to share thoughts and experiences about anything at all! It’s of course fine to take away conversations or ideas from the Networks to help you, or to share them with your family and friends, but please be mindful that this is a private and confidential space for people to share their experiences. If you are talking about what you have heard, unless you have permission, please don’t do so in a way that will identify others. Similarly, please don’t copy or forward any part of a conversation unless you have had permission from the person who shared it first.

Obtain Consent: never act on behalf of a member of the network unless they have clearly given their consent for you to do so

Negative statements: if you have negative things to say about any individuals or organisations, please don’t air these on the network. You may wish to privately contact a network moderator or member of the Support and Outreach Team if you wish to discuss them. Please also read the next guidelines:

Safeguarding and Whistleblowing: Network members are asked to follow the links and read more about what to look out for in every day life and the responsibilities we all have. Our network moderators are very aware of these responsibilities when it comes to what is discussed on the networks and will follow up appropriately on any concerns they have.

Talking about SMA UK: You are always very welcome to tell others about services, networks and fundraising activities but please get in touch if you would like someone to talk ‘officially’ about what we do via

Last updated: November 2020

We’re very aware how difficult it can be to raise money for much needed equipment or other needs and projects. Although we’re not able to contribute financially to people’s personal fundraising campaigns, and we’re not able to share or publicise these (please see more below), there may be other ways we can help.

Our small but experienced Support Team provides free confidential information, emotional support, practical advice and guidance to anyone affected by any form of SMA in the UK. We are always happy to provide any advice we can about possible funding avenues, including signposting to other charities / trusts who may be able to help. We might also be able to help in other ways, including providing supporting letters or with application processes, so please do get in touch and we will do as much as we can – contact Support Services.

Personal Fundraising Campaigns

Sometimes people choose to publicise what they’re trying to achieve and set up web-based platforms to raise money, such as through crowdfunding (e.g. ‘GoFundMe’). This can work well and we know of people who have achieved their goal this way. We give some suggestions about getting ready to raise funds in these pages of our website:

For us as a registered charity however, these web-based fundraising mechanisms present two major issues:

  1. Though many people demonstrate a clear evidence of their need and the cost of what they’re aiming for, this isn’t required by the web-based platforms and the mechanism is therefore open to abuse
  2. Though many people will later post evidence of their purchase or the outcome that’s been achieved because of the funding, there’s no requirement to do this by the web-based platforms so there’s no accountability to the people who’ve made donations

When we’re asked to post a personal campaign we don’t have the resources to undertake these very important checks. Nor would we wish to judge which campaigns are ‘worthy’ and which less so.

For these reasons we regret we’re unable to endorse people’s personal funding campaigns set up on web-based platforms and promoted via social media.

Thank you for your understanding.

Page last updated: September 2022

We support the rights of all adults to retain their independence, well-being and choice, and to be able to live their lives free from abuse, neglect and discrimination.

We are committed to a policy of zero tolerance of abuse and neglect. Mistreatment, abuse and neglect of any person are unacceptable.

Doing nothing about it is not an option.

If you have any immediate concern about an adult’s welfare, please phone, via your local council Adult Social Care Team or the police on 101.

Spinal Muscular Atrophy UK has a safeguarding policy and practice guidelines that it follows. For more information, please click on the link below;

Our Policy Statement

Page last updated: September 2022

Safeguarding children – the action we take to promote the welfare of children and protect them from harm – is everyone’s responsibility. Everyone who comes into contact with children and families has a role to play.

If you have any immediate concern about a child’s welfare, please phone the NSPCC Helpline 0808 800 5000 which is open 24/7.

Spinal Muscular Atrophy UK has a safeguarding policy and practice guidelines that it follows.

This policy is SMA UK’s response to the requirements of organisations working with children and families as set out in:
➢ The Children Act 1989
➢ The Children Act 2004
➢ Working Together to Safeguard Children July 2018

  • Our commitment to Safeguarding means that we will:
    take all reasonable measures to ensure that the risk of harm to children’s welfare is
  • take all appropriate action to address any concerns we have about a child’s welfare by
    working in full partnership with other agencies

To this end we will:

  • always follow the national guidance issued by the Secretary of State (as above) and the
    guidance and procedures of the local authority responsible for where the child of concern
  • always have an appropriately trained and experienced member of our Support Services
    Team as our Designated Safeguarding Person (DSP)
  • have robust procedures in place
  • ensure all staff and volunteers are clear what is required of them if they have any concerns or suspicions that a child has suffered, or is likely to suffer, significant harm (procedures and guidelines available on request)
  • ensure all who use our services are aware that safeguarding always overrides confidentiality
  • always ensure parental consent through our Contact procedures (available on request)
  • maintain our On-line E-Safety procedures (available on request)
  • maintain our safer recruitment procedures (available on request)
  • monitor and review this policy on a regular basis and address any weaknesses that are identified

Last updated January 2020

We respect that people have valid concerns about the use of animals in medical research. However, for anyone with a diagnosis of SMA, new research with any real prospect of an effective treatment or cure often starts in the laboratory and may involve the use of animals.

Whilst SMA UK does not directly carry out any research, as an organisation we fund and support research-focused projects, posts and activities. We have a strategy to fund high quality research to better understand SMA and so improve health and wellbeing. We fund different types of research as part of this strategy, including using cells grown in a lab, tissue samples, computer-models and when appropriate, animals (in general, these are mouse studies). All of these approaches, including research using animals, play an important role in the research process.

As a member of the Association of Medical Research Charities (AMRC) we support the principle of using animals in research when it is necessary to advance understanding of health and disease and to develop new treatments. This research only takes place where there is no alternative available. All AMRC member charities support this principle, as outlined on the AMRC website.

No charity takes the decision to fund this research lightly. We use expert peer-review to ensure that we fund only high-quality research where the benefits to people and animal health outweigh any harms to animals.

High standards of animal welfare are important and the UK has some of the strictest regulations in the world to control the use of animals in medical research. These both minimise discomfort for the animals involved and enable researchers to get reliable results. SMA UK only funds research which complies with the law and supports the principle of the 3Rs: To refine, reduce and replace the use of animals in research. Research funded outside of the UK must be carried out in the spirit of UK legislation as well as being compliant with all local legislation and ethical review processes. The majority of the public can accept that research using animals is necessary as long as there are no alternatives and suffering is minimised.

Further information and guidance on the use of animals in research can be found here.
Our Events

Occasionally our events will offer entertainment for children that may involve inviting an animal keeper / handler to attend and show them to children.

We seek information that confirms the animals are kept safely, hygienically and humanely by looking at reviews, insurance documents and references.

We will always ensure that our events do not engage in or offer access to any activities that are harmful to animals.

Page last updated March 2023

SMA UK is committed to respecting and safeguarding all those with whom it has contact. As someone who has agreed to volunteer, we ask you to join us in this commitment. These guidelines tell you what you can do to help maintain these standards.

Equality and Diversity

Our services and social activities are open to all, irrespective of. irrespective of age, gender reassignment, disability, ethnicity, marriage or civil partnership, pregnancy or maternity, religion or belief, sex and sexual orientation. All staff and volunteers are expected to treat all people equally and with respect.

Giving Information

We are accredited to the Patient Information Forum (PIF) TICK Quality Mark. This confirms that our SMA-related information has been through a professional and thorough production process and is based on reliable, up-to-date evidence which is communicated clearly. We don’t refer to controversial treatments or research. We are also careful not to be part of any negative statements about any individuals or organisations or mention names of anyone who has not given their agreement. We respectfully ask that when volunteering, you consider the standards we have signed up to. You can find accurate, up to date information on our website, here.


When you have contact with people, please consider both yours and their privacy and confidentiality. If someone does share personal information with you in a one – to – one conversation, please don’t discuss this with others unless you have both agreed it’s ok to do so. However, please note as described further below, that safeguarding always overrides confidentiality.

Social Media Networks

You may well belong to one or more of the many SMA-related social media networks. Please do be aware that when you are in contact with others in this way this should be as a private individual not as an SMA UK representative and that the above confidentiality guidance applies at all times. You’re very welcome to signpost people you know to our services, networks, and any fundraising activities they may wish to join.


Every person has a fundamental right to live a life that is free from harm, abuse and neglect. To safeguard is to take all reasonable measures to ensure this right is achieved for adults and children and that risk of harm to anyone’s welfare is minimised. Safeguarding is everyone’s responsibility.

If you hear or see anything that causes you concern about the welfare or safety of any child or adult, please know that the best way you can give them support is by:

  • listening and observing
  • not asking questions or investigating
  • remembering that safeguarding takes priority over confidentiality
  • knowing that the best way to show your support is to pass on the information
  • at the earliest opportunity accessing, completing and submitting our: SMA UK Safeguarding Concern Report Form.

This form goes through to our Support team. All the team are trained in Safeguarding and will contact you about your concerns.


Whistleblowing is the reporting of suspected wrongdoing. It’s what we ask you to do if you are concerned that anyone in a caring or support role, such as a staff member, volunteer or personal assistant is in some way abusing their position. Please:

This form goes through to our Support Services team. We will let you know we have received your concerns. All the team are trained and are fully aware of their responsibilities and the actions they should take.