I thank the Chairman and the committee for inviting us to appear before the committee today. I propose to make a short presentation to the committee outlining why we are here and detailing how we believe this committee can assist polio survivors in Ireland. We have prepared a longer paper which we have left with the clerk.
The post polio support group was set up in 1993 to provide advice, assistance and support to Irish polio survivors suffering from the late effects of polio, LEP, otherwise known as post-polio syndrome. Current membership of the group stands at around 500. LEP is a disabling condition that affects polio survivors, often decades after the initial polio attack. For many years, it was thought that after the initial attack and recovery phase the condition was stable. In the 1980s, LEP was internationally recognised medically.
Since its formation, the Post Polio Support Group, PPSG, noted trends in the types of symptoms and requests for assistance that it was receiving. It consequently decided to commission the report, Polio - the Late Effects Reality. The survey was conducted by occupational therapists among 224 of our members. It examined all aspects of their lives, including their needs at the time and their outlook on the future. The members' ages ranged from the late thirties to the eighties, most of whom had polio in the late 1940s and 1950s. It emerged that polio survivors are fiercely independent and determined to overcome all that is thrown in their way. However, the onset of LEP has dealt them a cruel and debilitating blow. Having achieved in many cases a successful life in all respects they have now been hit a second time by the late effects of polio.
The onset of LEP brings on a whole range of physical and psychological difficulties for polio survivors. This is difficult enough without the financial worry that many of our members have identified. The survey revealed that 56% of respondents are able to manage only with some or great difficulty, while 30% of the total sample appear to be living at or below the equivalent of the statutory minimum wage level in 2003. Some members spoke about their difficulty looking to the future, having to worry about basic needs such as household expenses. There are also services and products that are required which are beyond the financial grasp of the vast majority of members of our group.
The irony is that if these services and products were made available they would have practical benefits in slowing the onset of LEP for many of the survivors. This would reduce the ultimate bill to the State in the form of more acute services which will be required if the State continues to neglect survivors. The services that are essential include physiotherapy, occupational therapy, chiropody, dietary advice and the availability of alternative therapies. There is also a need on an ongoing basis for specialist aids and appliances such as mobility aids like wheelchairs, callipers and crutches, orthopaedic footwear and specialist clothing.
Examples of these costs include a single leg calliper which costs €1,200, a standard manual wheelchair which costs in the region of €2,500, while the average cost of a powered wheelchair is €5,000.
The sense of social isolation that many polio survivors feel, primarily as a result of the onset of LEP, cannot be underestimated. The PPSG recently provided funding to one member for a wheelchair, which enabled her to leave her house on her own for the first time in 11 years. Sadly, we do not have the money to alleviate all such cases of hardship that we come across. It is absurd that polio, and consequently LEP, has not been formally recognised by the Government for inclusion on the long-term illness list, despite the fact that LEP is medically recognised as a progressive disease that can recur many years after an individual first contracts the polio virus.
If LEP was recognised as a long-term neurological illness, similar to multiple sclerosis or muscular dystrophy, the number of entitlements available to polio survivors would significantly increase. We are baffled as to why the Department of Health and Children persistently refuses to admit polio to the long-term illness scheme. This one measure would alleviate much of the suffering and hardship. The rationale and public policy justification for doing so is clear and the cohort of people affected is small and ever decreasing as time passes.
The group, and polio survivors in general, have long-term requirements. Although we have received some help from health boards and through our own fund-raising efforts, we are not able to meet the needs of our members who need access to services, aids and appliances. These are denied to them. This is because polio is not recognised by the State as a long-term neurological illness. What is required is the inclusion of polio, and consequently LEP, as an illness in the long-term illness scheme.
Also required is the standardisation of the application procedures for entitlements - particularly as regards the medical card - and sympathetic consideration where benefits are concerned. Additional funds should be made available to assist with the most acute cases of LEP. This is necessary because even if a polio survivor manages to secure a medical card, access to services, aids or appliances is often delayed. In the case of people with LEP, delayed access to services, given the degenerative nature of the condition, is access denied. Also needed is the establishment by the Department of Health and Children of neurological multidisciplinary centres of excellence in the diagnosis, management and treatment of LEP.
Our survey suggests that a total fund of €4.8 million over the next five years would make considerable inroads in alleviating the immediate needs of the most acutely affected polio survivors. We have spent years lobbying health boards. We have now come to this committee to ask it to act as an advocate on behalf of polio survivors. We simply cannot understand why the Minister and his Department refuse to recognise the medical needs and hardship of our members. I would respectfully request that this committee ask the Department if it has any understanding of the serious hardship being endured by our members. The committee might also ask what practical and effective steps the Department will take to alleviate our members' difficulties. It would be useful to probe the Department's persistent refusal to recognise polio on the long-term illness list and to provide adequate funding to assist people who are suffering from the symptoms of LEP. We have tried unsuccessfully to get these answers and action from the Department. Hopefully, the committee may have more success in that regard.
I would like to ask my colleague, Ms Joan Bradley, to outline her personal experiences for the committee before I conclude the presentation.
