Rare Diseases: Advice and Guidance Services
The question
To ask the Secretary of State for Health and Social Care, what safeguards are in place to ensure that patients with complex, chronic or rare conditions are not disadvantaged by the requirement to use Advice and Guidance before referral.
Answered by Karin Smyth
Advice and Guidance (A&G) is not, and has not been, mandated for use prior to a formal referral. Practices are expected to use A&G to support clinical decision making in relation to a planned care referral where clinically appropriate, alongside sending traditional referrals and following locally agreed referral pathways, and this reflects longstanding practice.
A&G supports clinical decision making, does not override it, and does not remove the clinician’s decision to refer when referral is in the patient’s best interests.
We continue to support clinicians through guidance, pathway design, and local governance arrangements to ensure specialist triage models such as A&G are used safely, proportionately, and in a way that preserves clear clinical accountability, including for those with complex, chronic, or rare conditions.
Escalation routes for concerns about A&G request outcomes will continue to operate through locally agreed referral pathways and communication processes for general practitioners and patients, supported by improvements to the NHS electronic Referral System. Where patients have concerns regarding outcomes, local patient advice and liaison service teams can provide advice and support.
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