Our Information Service
Our Information Service
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.
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
- 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.
- 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.
In summary the 10 criteria for trustworthy health information are:
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 literacy, language and accessibility needs.
7. Content and design: Information is clearly communicated, easy to access and navigate.
8. Feedback: There is a clear process for users to provide feedback.
9. Disseminating: Information is promoted to maximise reach.
10. Impact: The impact of information is measured.
The PIF TICK criteria was developed in consultation with the Patient Information Forum’s 1,000 strong membership representing 300 cross sector organisations.
PIF consumer research found 80% of the public would look for a quality mark on health information. The PIF Tick is the UK’s only independently assessed quality mark for print and online information.
(Taken from the PIF website)
From 2012 – 2020, SMA UK was accredited to the Information Standard (an NHS England quality standard with similar aims to PIF tick) but this was phased out. SMA UK was first accredited to the PIF Tick quality standard in July 2021 and is audited annually.
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.
You can find all these on our website or you can order hard copies here.
|Current Title||Publication Date & Version|
|Spinal Muscular Atrophy – A Brief Summary||November 2023
|What is 5q Spinal Muscular Atrophy?||November 2023
|Symptoms, Diagnosis & Effects of 5q SMA
|The Genetics of 5q Spinal Muscular Atrophy||May 2023
|Family Planning for Couples Affected by 5q SMA||July 2023
|Drug Treatments for Children in England who have SMA||July 2023
|Drug Treatments for Adults in England who have SMA||May 2022
|SMA Type 1 – Looking After Your Child who has had a Recent Diagnosis||October 2023
|SMA Type 2 – Looking After Your Child who has had a Recent Diagnosis||October 2023
|Toys, Play & Activities for Babies and Young Children who have SMA||Aug 2022
|SMA Type 3 – Looking After Your Child who has had a Recent Diagnosis||Oct 2023
|5q Spinal Muscular Atrophy –
Summary Information for Schools
|Essential Information for Emergency Services when Assessing and Caring for a Child who has Spinal Muscular Atrophy||Aug 2023
|Adult Onset SMA – Diagnosis and Care||April 2023
|Who’s Who of Professionals||June 2023
|The Inheritance Patterns of Some Rarer Forms of SMA||Nov 2023
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.
|Core Team (Staff)|
|Information Lead||Accountable for the overall quality of health and care information production.
Responsible for writing, reviewing publications, system review, maintenance and monitoring.
|Information Coordinator||Maintains production review timetable.
Responsible for organising Expert and Target Audience feedback, reviewing, proofreading and publishing.
|Research Information Specialists (Contractors)|
|Scientific Research Correspondents||Writing / Expert review|
|Expert and Target Audience Reviewers|
|SMA UK Support, Outreach and Advocacy Staff||Expert review|
|External health, education and social care professionals (HESCPs)||Expert and Target Audience review|
|People living with / affected by SMA||Target Audience review|
|Members of the public with no connections with SMA||Target Audience|
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 email@example.com