As part of the Budget 2019 process Fighting Blindness made a submission to the Departments of Health and Finance. The submission highlights key priority areas based on information from recently published reports and a national survey of our members in 2017.
A summary of our key asks are outlined below. The full submission is available to download as a word document here. We would appreciate your assistance raising these issues with your local representatives, you will find contact details for your constituency on www.whoismytd.com.
1. Fighting Blindness believes that three areas need urgent attention for people living with sight loss. Specifically;
a) Mental health and wellbeing initiatives for people who are blind or visually impaired (cost estimate €50k)
b) Genetic counselling services for people living with an inherited retinal degeneration (cost estimate €73k)
c) A national information resource line for people who are blind or visually impaired (cost estimate €35k)
2. Financially resource and fully implement the recommendations contained in the Primary Care Eye Services Review Group Report
In 2017 the Fighting Blindness Insight Counselling Service provided 521 hours of face to face counselling and 360 hours of telephone counselling support, as well as 296 hours dedicated to Visionaries School of the Arts sessions, 22 support groups and 40 mindfulness group sessions. This is a vital service that provides necessary support for people and families affected by sight loss, it is currently under resourced and requires additional support.
Investment of €50,000 in this service would facilitate the recruitment of an additional psychotherapist to meet growing demands and allow further expansion of the service nationwide. This resource would allow Insight to provide an additional 660 therapy hours as well as be available to do other non-client but equally vital work for the service.
Target 5000 provides genetic testing and clinical assessment for people affected by an inherited retinal degeneration (IRD), aiming to phenotype and genotype all 5,000 people in Ireland who are affected and develop the first national registry of inherited retinopathies.
The genetic counsellor has a vital role in the Target 5000 programme to deliver information to people affected and their families. They help people understand their diagnosis and provide insight to the benefits, risks and limitations of the result as well as advise on possible next steps. They provide support and guidance around the inheritance pattern of the disease and the likelihood of it recurring in other family members – something which can impact greatly on decisions around family planning. There is also an important role for the genetic counsellor in explaining what is meant when a genetic mutation has not been identified, which can occur in 32% of cases.
The Target 5000 programme requires additional funding for the Genetic Counselling Service to ensure appropriate support and care is delivered to participants. Fighting Blindness secured funding for the Genetic Counselling Programme in 2018 but additional investment of €73k is required to sustain this vital service in 2019.
Time restraints in the clinic mean that increasingly patient organisations are providing essential follow up to people, giving information about the condition and explanations about potential treatments a doctor may prescribe, as well as advice about how to access practical supports and navigating the health system.
In 2017, there were 384 queries to the research and advocacy departments alone in Fighting Blindness, this equates to 288 hours of information provision. This is a vital service which requires substantial resources to cater for the current and increasing demand for reliable and up to date information on a wide range of topics. To meet this demand Fighting Blindness has identified the need to establish a standalone national information resource line at a cost of €35K to provide accurate timely resources and information to people who are blind or vision impaired.
There are an estimated 246,773 people in Ireland who are blind or visually impaired, this figure is expected to increase to 271,996 people by the year 2020. Increasing patient numbers and an increase in chronic vision conditions is placing a huge strain on the current model of eye care service delivery. Ophthalmology waiting lists are at breaking point and are consistently reported as some of the longest in the country compared to all other speciality areas. Figures from July 2018 show that there were 51,999 people on the ophthalmology waiting list, with 17,867 of these people waiting for over a year.
The Primary Care Eye Services Review Group Report and National Clinical Programme for Ophthalmology Model of Eye Care make a number of recommendations for restructuring and improvements in the delivery of eye care services. Blindness and vision impairment cost the Irish State €205 million in 2010 but up to €76 million could potentially be saved if a series of cost-effective measures, many of which are outlined in the above documents, are implemented. We know that 75-80% of blindness is preventable. Urgent action is required to fully resource and implement these recommendations and ensure that people are not needlessly losing valuable sight while on a waiting list to be treated.
For further information please contact Caitríona Dunne on firstname.lastname@example.org or 01 6789 004.