Though the NHS website provides information about Spinal Muscular Atrophy (SMA), it is at a more generic level than a parent with a child diagnosed with the condition or a young person or adult living with SMA may be looking for. The NHS website recognises this and signposts our website for this more ‘in-depth’ information.

We are also often a first port of call for information sought by members of the public who want to find out more about the condition and ‘Google’ SMA. Professionals new to the condition who are in a support role to someone affected by SMA also often turn to us for information and advice.
In summary, therefore, we aim to maintain and further develop user-friendly accessible information for:

• People affected by SMA

Information that:

• • Tells them about the condition, its management, services available, any treatment options and research updates
  • Enables them to communicate effectively with medical and other professionals and play an active role in care, treatment and decision making, for themselves or their children.

• Professionals who are new to the condition and / or in a support role.

Information that:

• • Enables them to quickly understand the nature of the condition and the challenges that are faced
  • Tells them about service and support options and research and treatment updates

• The general public who want to find out about the condition

The PIF TICK is the UK-wide Quality Mark for Health Information.

When you see the PIF TICK on leaflets, websites, apps or videos it shows an organisation’s health information has been through a professional and robust production process. To be awarded the PIF TICK an organisation must show its health information production process meets 10 criteria:

1. Systems:  Information is created using a consistent and documented  process.
2. Training: Staff receive ongoing training and support.
3. Need: Resources meet a genuine need.
4. Evidence: Information is based on reliable, up-to-date evidence which is communicated clearly.
5. Involving users: Users are involved in the development of information.
6. Health inequalities: Information is written to meet health and digital literacy, language and accessibility needs of the target audience.
7. Content and legal: Content is clear, easy to access, and meets local legal requirements.
8. Feedback: There is a clear process for users to provide feedback.
9. Disseminating: Information is promoted to maximise reach.
   Impact: The impact of information is measured.

From 2012 – 2020, SMA UK was accredited to the Information Standard (an NHS England quality standard with similar aims to PIF tick). This was phased out. SMA UK was first accredited to the PIF Tick quality standard in July 2021 and is audited annually.

We are accredited members of the Patient Information Forum. When you see the PIF Tick on one of our information resources you know that it has been produced in the following way:

Download the diagram > 

These are reviewed by experts in SMA and members of the various Target Audiences. These publications carry the PIF TICK.

• All publications are reviewed annually to ensure any contact details and links are correct.
• An interim review is conducted if information needs updating e.g if there is new treatment information.
• A full review is conducted once every three to six years.

We always check with relevant experts that information is accurate and, where possible, that it meets the needs of the Target Audience.

However, due to the volume and frequent changes in the following information areas, we don’t always have time to follow all the steps the PIF TICK requires. In view of this, these website areas do not carry the PIF Tick:

• Living With SMA
• Treatments and Research
• Conversations with Healthcare Professionals

We work with a supportive and connected SMA Community who provide tips, ideas and share their experiences. These may be published as Community Voices or appear in our Living With SMA pages or other guides. We take care to ensure their accuracy if, for example, they contain any condition specific information. They do not carry the PIF TICK.

These guidelines apply to all our publications and are made public on our website.

Evidence Sources

For SMA related information with a medical, research, clinical trial or access to disease modifying drug treatments focus, our main sources are:

• Established leader(s) in the field – individual research and clinical expert(s) or lead organisation (e.g., SMA REACH UK – SMA research and clinical hub, Adult SMA REACH UK, Association of British Neurologists, Royal College of Paediatrics and Child Health)
• The International Standards of Care for SMA
• Recognised publications such as PubMed
• UK regulatory authorities (e.g., NICE, MHRA, NHS England, SMC)
• Pharmaceutical companies conducting clinical trials and manufacturing treatments

To ensure recognition by the SMA Community, it is at times necessary to refer to the pharmaceutical company marketing a treatment as they are a key source of information on clinical trials and administration dosing. When we work with pharmaceutical companies, they and we always follow the guidance and comply with the ABPI sourcebook and the ABPI Code of Practice. It is also necessary to refer to the treatment’s marketing name as well as its general name to ensure people are aware this is one and the same product. For SMA there are currently no competing companies producing the same product.

For other medical, health, social care and research information, sources may be:

• PIF TICK accredited
• Health on the Net (or other recognised Quality Mark) accredited
• Central or Local Government
• NHS
• An established leader in the field (e.g., Disability Rights UK, Contact)
• Article in peer-reviewed academic journal
• Agreed by our scientific research correspondents.

For social care information, other additional criteria may apply:

• Family or professional recommends
• We have a working relationship
• A relevant example of an established organisation.

Signposting and advertising

We don’t make recommendations as such but, where relevant, may include options of not-for-profit organisations that provide support, products or services, that we consider relevant to a discussion topic. They must meet one or more of the following criteria:

• Featured or recommended by one of the trusted sources above
• Adult or family affected by SMA, or healthcare, education or social care professional recommends
• We have an established working relationship
• A relevant example of an established organisation or provider
• A recognised leader in their field

We very occasionally include for-profit organisations if they meet one or more of the following criteria:

• Are operating in a limited market specifically relevant to people in the SMA Community, where there are very few providers
• Are a clear market leader of services relevant to the discussion topic
• An adult or family affected by SMA, or a healthcare, education or social care professional, recommends.

Occasionally a Charitable Trust or a company may be asked to sponsor a piece of work e.g., publication of a booklet. In such a case this would be acknowledged by, for example, displaying their logo on the back cover. Such a sponsor may provide expertise and guidance with design and layout options but would have no input into the content or overall production process.

We don’t publish information produced by third parties apart from the International Standards of Care (SoC) for SMA and links to articles published by recognised journals.

Many people contribute to our information service in one or more ways, including giving expert and target audience feedback, sharing ideas, tips, experiences and photos and by asking questions. We’re extremely grateful to all the members of the SMA Community and the health, education and social care professionals who give their time, experience and expertise.

If you’d like to be involved as a contributor or reviewer, we’d be delighted to hear from you; please email information@smauk.org.uk