How voluntary and community sector (VCS) organisations can help us develop guidance

Early stages

At the early stages of developing our guidance or quality standards, you're invited to share your views with us.

This might include:

• commenting on documents outlining what the guidance will cover, commonly referred to as the ‘scope’
• attending a scoping or stakeholder workshop with other stakeholders to discuss the scope of the guidance
• telling us about priority areas for quality improvement where we've already developed guidance - this is called a ‘topic engagement exercise’.

It's important to work with us early on to make sure that:

• outcomes that matter to people using services and their carers are considered
• we identify all the people or communities whose experiences and perspectives might be relevant to the guidance
• we understand any issues affecting people protected by equality legislation.

Submitting evidence

Your organisation may be invited to send us evidence about the experiences of people using services, their carers or the public. This helps us identify aspects of treatment or care that is not:

• represented in published literature
• captured in measures used in clinical trials and research studies
• understood by the committee developing the guidance.

This can be an opportunity to identify the priorities and preferences of those using services. It can also help understand the added value of a particular treatment, care option or intervention.

Strong submissions provide facts, information and summaries of experiences. This gives a concise, accurate and balanced overview of patient and public perspectives. 

Submission writing tips

• Identify if you need to gather any further information from people who use services or the public.
• focus on the experiences of many people rather than exceptional cases
• report on the quality of life impact rather than clinical or cost-effectiveness
• include quantitative information such as numbers from surveys, as well as qualitative information like written quotes
• acknowledge any shortcomings as well as advantages of any new treatment, care or service
• try to cover a range of experiences
• be clear and concise.

Identifying people to share their experiences with us

You might be asked to suggest someone to share their experience with our committees. This might be nominating a patient or topic expert to share their perspectives with us, or identifying people who might be interested in becoming a committee member. We recommend choosing someone with:

• broad knowledge of the condition, treatment or care option, the new treatments and outcomes important to people using services
• broad knowledge of the particular community our guidance relates to
• personal experience of the condition either as someone who uses services or as a carer, and where possible, the treatment or care option in question.

People who share their experiences with our committees, or who sit on committees as a member, are chosen to give their individual opinion. They are not there as representatives of the organisation that nominates or supports them.

Who to choose

People who:

• consent to their nomination
• represent the different perspectives of people who use services, carers and communities (if possible)
• can keep those perpectives at the forefront
• are able to give different sides of the discussion
• are confident speaking in front of large groups
• can read ahead to prepare for meetings.

Consultation is the period of guideline development when stakeholders can give us feedback. It usually happens at 3 stages:

• scoping - the early stages of our work
• draft guidance - a draft version of our guidance, standards or advice
• reviewing guidance.

It's really important for you to comment so that we can make sure our guidance meets the needs of the people it's relevant to.

When you take part in a consultation, think about how the recommendations, standards or advice affect people you work with. We'd like to know:

• If you agree with the recommendations, standards or advice.
• If you do not agree, tell us why:
• Is there anything missing that would be important to people using services and the public?
• Have we interpreted the evidence correctly?
• Where there are uncertainties or gaps in the evidence, do you have any evidence such, as patient surveys, that could help us?

You can find more advice and information in guides for developing our guidance.