Working for People with Sight Loss

Serious concern for health and wellbeing of 40,000 people on ophthalmology waiting lists on World Sight Day

The National Council for the Blind of Ireland (NCBI) has expressed serious concern at the impact of ophthalmology waiting lists on the health and wellbeing of the more than 40,000 [1] people who continue to face long delays in accessing potentially sight-saving treatments. Today (Thursday 11th October), on World Sight Day, the charity also warned of the impact of the knock-on delays in referrals to its services for people who are experiencing sight loss.

Chris White, CEO of NCBI says: “Ophthalmology waiting lists have become completely unmanageable. We know that as much as 75% of sight loss is avoidable [2] but 40,000 people are missing out on vital early intervention because waiting lists are out of control. The Government has committed to eliminating avoidable sight loss [3] but we have seen absolutely no progress on waiting times in the last year. Delays in access to treatment for conditions like age-related macular degeneration, which is the biggest cause of sight loss in Ireland, can cause irreversible vision loss.”

NCBI is also concerned at the knock-on delays in referrals to its services for people who are experiencing significant deterioration in their sight and are struggling to remain independent. For 61% of patients, wait times extend longer than 6 months, 40% over 12 months, and 24% waiting over 18 months.

“We know that the sooner someone experiencing sight loss can access vision rehabilitation services, the greater their chance of maintaining their independence and leading a full life. But the waiting list crisis means that people are not getting access to treatment or vital services in time,” continued White.

Mayo parent Natalie Cramp was not referred to NCBI until three years after her son’s diagnosis. “Lennon, was just shy of six months old when we noticed that his eyes were making irregular movements. When we eventually got to see a consultant we were given the news that Lennon had a condition known as Nystagmus. We were just given the news and sent away to deal with it with absolutely no direction or support. We didn’t know what to do or who to speak to we were totally lost.”

“Eventually, we sought appointments with private consultants in two different hospitals in the hope of answers. It was at this point, nearly three years on, that we were connected with NCBI. This contact has transformed our son’s life, we have expert support and information at our finger tips. I only wish we had access to the NCBI from that initial hospital appointment when we learnt of Lennon’s diagnosis, as it would have greatly aided his development and been a tremendous support to us.”

NCBI believes that its Sight Loss Advisor programme could provide a much-needed service to patients currently waiting for ophthalmic treatment in Ireland and wants to see funding prioritised for a national roll-out.  Like the well-established Eye Clinic Liasion Officer role in the UK, the sight loss advisor is at the forefront of service delivery, receiving direct referrals from ophthalmologists and acting as a point of referral for patients and families.

“Being told that you’re losing your sight can be a harrowing experience. Our Sight Loss Advisor is based in an ophthalmology clinic and is there, at the point of diagnosis, to provide vital support and information to people who are facing a serious deterioration in their level of vision. Not only is early intervention key in the treatment of eye conditions, but early access to support and services results in better outcomes for people with sight loss,” said White.

NCBI has already conducted a pilot programme with the Mater Hospital Eye Clinic, which showed that having access to services available in the clinic improves patient experience, empowers patients, and enhances education and understanding of eye conditions for patients and their families. It has plans to roll out further Sight Loss Advisor pilots at the Mater Hospital Eye Clinic and at Temple Street Children’s Hospital.

ENDS

For more information contact:

Kevin Kelly, Head of Policy, Advocacy and Campaigning

086 7811744 or email [email protected]

Notes to editors:

  • NCBI (National Council for the Blind of Ireland) is Ireland’s national charity working for the rising number of people affected by sight loss. Its practical and emotional advice and supports help 6,000 people and their families face their futures with confidence every year.
  • At the end of August, National Treatment Purchase Fund outpatient data reported 40,641 individuals currently waiting for outpatient ophthalmic services, the highest number ever recorded to date.
  • Ophthalmic services boast the fourth longest waitlist of any specialty, behind ENT, Orthopaedics, and Dermatology.
  • Currently the number of children awaiting outpatient treatment totals 7,874 children, 2,495 increase since August 2017.
  • The role of the Sight Loss Advisor is to support and provide high quality information, signposting to health/social care services, patient advocacy, emotional support to both the individual and their family, support with self management at home, and development of an individualised care/plan.
  • Sight Loss Advisors provide an estimated 10-minute saving in consultant’s time per patient (RNIB, 2015), as well as a reduced number of follow up appointments as a result of on-going support and information being provided by the Sight Loss Advisor.
  • In addition to saving time, Sight Loss Advisors have an estimated financial return of £10.57 for every £1 invested in the UK (Sing, 2013).

References:

  1. National Treatment Purchase Fund Data on inpatient/day case surgeries and outpatient waiting lists. http://www.ntpf.ie/home/home.htm
  2. National Vision Coalition. Economic Cost and Burden of Eye Diseases and Preventable Blindness in Ireland.
  3. National Clinical Programme for Ophthalmology. http://www.hse.ie/eng/about/Who/clinical/natclinprog/ophthamology/