Your views are important to us.
The views of people who use services, their carers and voluntary and community sector organisations make a significant impact on our guidance and advice.
Case study 1: how patient input improved our guidance
Axial Spondyloarthritis (axSpA) including ankylosing spondylitis (AS) affects around 200,000 people in the UK. The National Ankylosing Spondylitis Society (NASS) is the only UK charity dedicated to the AS community.
Getting patients' views
NASS members felt our draft guidance did not reflect their needs. A survey of their members received over 800 responses in 2 weeks.
The survey findings were submitted in response to the draft guidance. NASS then attended committee meetings to make sure patient views continued to be fed into the process.
The impact on our guidance
Because of the survey results, we made changes to the final published guidance (TA383). Patient input helped make additional treatments available and enabled patients to switch treatments. NASS has shown the impact that stakeholders of specialist patient organisations can have on policy.
What is Ankylosing Spondylitis?
Case study 2: how patient experts helped us develop guidance
The medical technologies advisory committee (MTAC) invited 2 patient experts to share their experiences of Peristeen.
Peristeen is an irrigation system for people who experience problems with their bowels, such as people with spinal injury.
Getting patients' views
Normally patient experts do not take part directly in MTAC meetings. But because Peristeen is a technology used directly by the patient, the committee needed to speak to people with personal experience. The patients who attended the meeting said that Peristeen had been life changing in managing their bowel conditions.
The patients were able to:
- Talk about what it’s like using the technology and how it fits into their daily routine
- Explain how frequently they need to use the technology, which was a key factor in the economic model.
- Explain their support and training needs, how it can take a while to get used to Peristeen, and that it might not be suitable for everyone.
- Give real world context to the patient-reported outcome measures. One patient expert said they'd been able to go camping with their children again, which they could not have done before.
- Describe how they had both considered colostomy before trying Peristeen.
The impact on our guidance
Our guidance states that Peristeen can improve people’s quality of life by restoring dignity and independence. It also notes that it may take a number of weeks before a person is comfortable using it. These were key points that the patient experts made.
The experts expressed gratitude at being able to help others access the technology by sharing their experiences.
Getting the patient’s voice heard is crucial to developing guidance that works in the real world
Get in touch
To find out more about how your organisation could help shape our guidance, contact pacn@nice.org.uk or call us on 0161 870 3020.