Introduction

People with learning disability in England number ~1.2 million [1]. They face significant health inequalities [2]: people with a learning disability are ten times more likely to have vision problems than the rest of the population [3]; over fifty percent of those with learning disability who died prematurely had a visual problem [4]. Compounding this increase in prevalence of eye disease is research showing that people with learning disability are less likely to have access to eye care than the rest of the population [5, 6]. There are several reviews in the ophthalmic and optometric literature which detail the prevalence and incidence of specific conditions in both paediatric and adult populations with learning (or intellectual) disability [5, 7,8,9,10,11]. People with learning disability have a right to equal standards of health care by law [12]. Several groups, including the Royal College of Ophthalmologists, have called for changes to policy and the whole eye care pathway to allow patients to access services and receive equality of care [13, 14].

In order to address this, the Local Optometric Support Unit have published their refreshed clinical pathway for eye care for people with a learning disability [15]. The document sets out the adjustments to practice that a community optometrist might make in order to provide optimal care for a patient with learning disability attending routine primary eye care. A key difference with this refreshed guideline compared with its predecessor is the ambitious aim to improve integration between primary eye care and hospital eye services.

By providing services through the LOCSU scheme, the optometrist is agreeing to use their professional judgement and reasoning, drawing on their training and relationship with hospital eye services to determine if the patient would benefit from further assessment by the hospital eye services.

When a local pathway is newly established, it is anticipated that for the majority of patients, the optometrist will be meeting the patient for the first time and there will be little in the way of previous records. Few patients with learning disability achieve ‘normal’ vision [9, 16,17,18,19] and it is likely that a high number of ocular abnormalities will be detected [9, 20,21,22]. Some patients will require hospital eye services for assessment, treatment or registration for sight impairment; but for others with longstanding or congenital ocular abnormalities, referral into the hospital eye service will add little value and be stressful for the patient and carer.

Within the LOCSU pathway lie key performance indicators (KPIs) which are to be reported quarterly. These include the percentage of patients referred from the LD community eye care service into secondary eye care, the target for which is set locally. In order to facilitate this, dialogue between primary and secondary care will need to take place to establish what referrals would be considered to add value to the patient or carer.

There are few ophthalmologists nationally who frequently encounter patients with a learning disability in their hospital practice and knowing where to start when creating referral criteria or KPIs may create a barrier to services becoming established. In order to address this gap in experience, we set about developing a set of consensus statements regarding referral thresholds for ocular conditions commonly encountered in adults with learning disability.

Method

Eye Health Professionals known to be involved in the community and hospital management of adults with learning disability were approached and invited to participate. The group comprised two specialist learning disability optometrists, two community optometrists and two consultant ophthalmologists. A series of telephone and video interviews were undertaken by one of the authors (RP). A baseline for referral thresholds was drawn up, based on those previously agreed by consensus for the NHS England Special School Eye Care Programme (unpublished). Each member of the group commented on the usability and clarity of each element of the referral criteria and any additional research or evidence which might support the referral threshold. In addition, each contributor was asked to express the overriding principles by which they make decisions regarding referral thresholds for patients with learning disability. Individual comments were collated into the final document which was circulated and agreed upon by all participants.

Results

Overriding principles

The referring optometrist should consider each of these questions when determining if the patient would benefit from referral into the Hospital Eye Service (HES).

  • Are there any new findings – has the patient previously been seen by HES?

  • Has there been a change in function noted by the patient, carers, family?

  • Is this likely to impact the patient’s social function and activities of daily living?

  • It is a stable or progressive condition?

  • Is there any treatment that could be started in the community which would not necessitate referral into the HES? (including advice, spectacles, rehabilitation, low vision appliances.)

The table below lays out the suggested referral thresholds and accompanying notes for common ocular conditions found in patients with learning disability.

Table 1 Referral Thresholds for common clinical findings in patients with learning disability.
Full size table

Conclusion

The aim of the LOCSU pathway is to raise awareness of, and improve access to, eye care for people with learning disability. It offers an opportunity to identify those patients for whom intervention or support can be offered, in the community or hospital eye service; be that spectacles, low vision support, baseline assessment from which future change can be measured or progressive, treatable eye disease.

In order for a pathway to improve access to eyecare to be successfully implemented, it is necessary to raise awareness of both the likely barriers that patients, carers and eye health professionals may encounter, and highlight existing guidance, research and good practice in overcoming these barriers. Most ophthalmologists in the UK have occasional exposure to patients with learning disability and will be seeking a place from where to begin conversations with their local optometric committees.

We have presented a succinct set of consensus statements relating referral thresholds for common presentations of visual problems in adults with learning disability in the UK distilled from the collective experience of a group of eye health professionals (Table 1). The intention was not to present a comprehensive review of management of each condition. The consensus statements may form the starting point from which each area could develop locally agreed criteria, as is suggested by the LOCSU guidance [15]. A future extension of these consensus statements may be to develop an accepted minimum dataset for patients seen within the LOSCU learning disability pathway. This would enable the development of population-based data, including prevalence of ocular conditions in the learning disability population, enable robust evidence collection on the impact of interventions and point to areas for future research. The recent expansion into telephone or video consultations which have proved successful in many areas offers alternative delivery options which may be more accessible to patients and carers and lend opportunity as a reasonable adjustment to face-to-face hospital visits.

Summary

What was known before

  • Adults with learning disability have a higher prevalence of sight impairment than the general population, yet are less likely to access primary eye care.

  • The key to a successful community eye care service for adults with learning disability is close integration with secondary eye care.

What this study adds

  • Referral thresholds indicating which patients would benefit from referral into secondary care are presented.

  • Local Eye Health Networks or Integrated Care Systems may consider using these as a starting point when commissioing a service.