Referral thresholds for an integrated learning disability eye care pathway: a consensus approach

People with learning disability in England number approximately 1.2 million and face significant health inequalities; they are ten times more likely to have vision problems than the general population, and over half of those with learning disability who died prematurely had a visual problem. Despite higher prevalence, access to eye care is lower than for the general population. Reviews in ophthalmic and optometric literature describe prevalence and incidence of specific conditions in paediatric and adult populations with learning (intellectual) disability. In law, people with learning disability are entitled to equal standards of health care, and professional bodies have called for changes to policy and eye care pathways to improve access and equity of care. The Local Optometric Support Unit (LOCSU) published a refreshed clinical pathway for eye care for people with learning disability, outlining reasonable adjustments in primary eye care and aiming to improve integration between primary and secondary care. Optometrists providing services within the LOCSU scheme use professional judgement, supported by links with Hospital Eye Services (HES), to determine the need for referral. In newly established pathways, many patients will be new to optometrists and may lack previous records. Few patients with learning disability achieve normal vision and many ocular abnormalities are likely to be detected. While some will require HES assessment, treatment or sight impairment registration, others with long-standing or congenital abnormalities may not benefit from hospital referral, which can be stressful. The pathway includes key performance indicators (KPIs), including the proportion of patients referred to secondary care, set locally. Dialogue between primary and secondary care is needed to determine which referrals add value. Given the relative scarcity of ophthalmologists experienced with learning disability in hospital practice, establishing referral criteria and KPIs can be a barrier. To address this, the authors developed consensus statements on referral thresholds for ocular conditions commonly encountered in adults with learning disability.

Eye health professionals involved in community and hospital care of adults with learning disability (two specialist learning disability optometrists, two community optometrists, and two consultant ophthalmologists) were invited to participate. One author (RP) conducted telephone and video interviews. A baseline set of referral thresholds, previously agreed by consensus for the NHS England Special School Eye Care Programme (unpublished), served as a starting point. Each participant reviewed the usability and clarity of each referral criterion and provided supporting evidence or research where available. Participants also articulated the overarching principles guiding referral decisions for patients with learning disability. Individual contributions were collated into a final document, which was circulated and agreed upon by all participants.

- The study presents a consensus-based table of referral thresholds for common ocular conditions in adults with learning disability, intended to support integration between primary eye care and Hospital Eye Services (HES) and to guide locally agreed KPIs. - Overriding principles for referral decisions include considering: (1) whether findings are new and whether the patient has been previously seen by HES; (2) changes in functional vision reported by the patient, carers, or family; (3) impact on social function and activities of daily living; (4) whether the condition is stable or progressive; and (5) whether community management (advice, spectacles, rehabilitation, low vision aids) can obviate the need for HES referral. - Example referral thresholds and notes from the consensus table include: • Lids: Ptosis/entropion/ectropion—refer if new or impairing visual function; consider interim measures and remote consultation with HES. Chalazion—refer if atypical or unresponsive to community management. Trichiasis—refer if symptomatic with corneal involvement; consider MECS for acute symptoms. • Anterior segment: Refer if not responding to community measures; consider remote consultation. Address dry eye/chronic eye rubbing and investigate keratoconus, especially in Down’s syndrome. • Microphthalmos/coloboma: Refer if associated with reduced vision eligible for sight impairment registration; community glaucoma monitoring may be appropriate after discussion with HES. • Corneal opacity/irregularity: Refer if previously undiagnosed or progressive. Scissor reflex on retinoscopy is a sensitive sign for early keratoconus (notably in Down’s syndrome) and should prompt referral. • Glaucoma/IOP: Refer as per NICE guidelines for raised IOP; use various IOP measurement tools over several visits (e.g., Icare). If unable to obtain IOP, referral is unnecessary unless risk factors exist (age >40 with first-degree relative with POAG, anterior segment abnormalities). Utilize local glaucoma referral refinement schemes where available. Narrow angles (Van Herrick): discuss with HES regarding ACG risk factors; provide ACG symptom advice as appropriate. • Visual fields: Formal fields should be reserved for specific concerns due to potential reliability issues; consider ECLO/low vision referrals and sight impairment registration where appropriate. Confrontation field deficits warrant discussion with HES for further investigation. • Fundus/optic disc: If no change in visual function, no referral is necessary but attempt annual fundus assessment. Inability to examine fundus: refer only if not previously investigated in childhood. Small optic disc: refer only if not previously documented or if visual function has changed. Swollen optic disc: refer, noting crowded discs with hypermetropia can mimic swelling. Pale disc: refer (contextual note implied by table structure). • Diabetic retinopathy: Refer patients with R3, R2, or M1 disease; ensure enrollment and reasonable adjustments for the Diabetic Eye Screening Programme. • AMD/drusen: For suspected wet AMD, use local urgent pathways as per NICE; for dry AMD, consider ECLO/low vision and support organizations; liaise with HES on optimal assessment. • Ocular motility and nystagmus: Refer if symptomatic, atypical, vertical nystagmus, or new findings. Horizontal/manifest latent nystagmus is common; assess eligibility for sight impairment registration and low vision support. New nystagmus is associated with oscillopsia and behavioral change. • Strabismus: New or changing deviations warrant referral. Patients concerned about their squint should be referred for potential surgery. In adults with learning disability, a relaxed exotropia posture may be seen; long-standing esotropia with reduced abduction is common. New exotropia can indicate vision loss; new esotropia with greater distance deviation may suggest shunt blockage or decompensated hydrocephalus. Stereoacuity abnormalities in adults do not require referral. - The output is a succinct, pragmatic tool intended for local adaptation, not a comprehensive management guideline.

The paper provides a concise set of consensus statements defining referral thresholds for common ocular conditions in adults with learning disability in the UK, derived from the collective experience of eye health professionals. It is intended as a practical starting point to support integration between primary care and hospital eye services and to inform locally agreed referral criteria and KPIs, rather than a comprehensive review of condition management. Local services can adapt these statements to develop their own criteria in line with the LOCSU pathway guidance.

The authors explicitly note that the work is not intended as a comprehensive review of the management of each condition. The consensus statements are designed as a starting point for local adaptation, which may limit generalizability without local clinical governance and adaptation.