Polio - The Late Effects Reality

‘Polio – The Late Effects Reality’ provides an insight into a section of the Irish community that is suffering the consequences of past developmental problems. The overwhelming impression gained from analysis of both the quantitative data and the verbal testimony collected for the report is that this community feels isolated. Their fear of the inevitable progression of LEP is being exacerbated by the knowledge that the State is showing little interest in them.

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Summary of Polio - The Late Effects Reality

REPORT RECOMMENDATIONS
POLIO AND LEP IN IRELAND
REPORT FINDINGS

This document is a summary of the report, ‘Polio – The Late Effects Reality’, commissioned by the Post Polio Support Group (Post Polio Support Group). This report has found that many Polio Survivors in Ireland are experiencing increased physical and financial hardship as they enter their middle and later years due to the onset of the Late Effect of Polio (LEP) symptoms (also known as Post Polio Syndrome (PPS)). Foremost amongst these difficulties is reduced mobility, leading to problems in the performance of activities integral to a full life. In many cases, assistance is required from carers or mobility aids to perform basic tasks. It cannot be stressed strongly enough that these are not age related problems. The Post Polio Support Group has members in their 40s whose quality of life has been reduced by LEP.

Notwithstanding the evidence that LEP is the result of permanent neuronal damage which took place many years ago, the Department of Health and Children has consistently refused, despite repeated representations, to include the condition on the Long Term Illness List. Inclusion on the List would assist LEP/PPS sufferers to proactively manage their condition and to remain active in the community for longer, both economically and socially. A crucial benefit of such inclusion would be a reduction of the present and future costs to the health services of acute/long-term care for sufferers.

REPORT RECOMMENDATIONS

The report makes a number of recommendations to Government:

Polio/LEP should be acknowledged as a long-term neurological illness by the Government and included on the Long Term Illness List in the same way as Multiple Sclerosis. The claim by the Department of Health and Children that LEP is covered under other schemes ignores the fact that these schemes are means tested and that no specific drugs are available for the treatment of LEP. Making aids and appliances available to all who need them would ease a major burden of worry for those affected by LEP and would also reduce the costs of acute/long-term care by the State.
Any individual who has experienced a paralytic episode of polio and has been diagnosed with LEP/PPS should be entitled, in her/his own right in the first instance, to a Medical Card.
The Department of Health and Children should establish multi-disciplinary centres of excellence in the diagnosis, management and treatment of LEP at Beaumont Hospital, Dublin, Cork University Hospital and University College Hospital, Galway.
Centres of excellence should contain an advisor from the Post Polio Support Group, funded by the statutory authorities, to advise on entitlements to benefits and allowances.
Every Community Care Area should have at least one Occupational Therapist and/or Physiotherapist trained in LEP and its management.
Full training in the use of aids and appliances should be provided to all those in receipt of them.
Benefits related to mobility should not be linked to the age of the applicant.
Benefits related to electricity and gas should be granted to all those with a clinical diagnosis of LEP, regardless of age.
Public servants dealing on a one to one basis with applicants or recipients of State derived benefits, allowances and grants, should be given disability awareness training.
The Department of Enterprise, Trade and Employment (or The Competition Authority) should launch an investigation into the pricing differential of aids and appliances in Ireland compared to neighbouring EU countries.

POLIO AND LEP IN IRELAND

To most people, the polio epidemics of the 1940s and 1950s are only a vague memory reminding us of a time when a developing Ireland struggled to provide a healthy environment for its citizens. Deficiencies in hygiene, water and sewerage systems were the main causes of polio outbreaks, which may have affected more than 30,000 people over the years, usually in early childhood. While some suffered only flu-like symptoms, in other cases the virus spread to the nervous system causing paralysis and, sometimes, death. Approximately 7,500 of those who contracted the acute form of the disease are still surviving in Ireland today.

However, in the 1970s, it became evident internationally that Polio Survivors were developing unexpected health problems such as renewed muscle weakness, joint and muscle pain, excessive fatigue, sensitivity to cold and respiratory and mobility problems. As more cases emerged, these symptoms became recognised by the medical profession as a clinical condition known as the Late Effects of Polio or Post Polio Syndrome.

The recovery process was generally long and painful, requiring the use of mobility aids such as wheelchairs, crutches and callipers. Some survivors remained dependent on respiration aids for life. Eventually, many acute sufferers recovered sufficiently to lead independent lives. For this reason, medical opinion tended to regard polio as a non-progressive neurological disorder and not as a long-term illness.

While not every paralytic Polio Survivor develops LEP, research suggests that 40-60 per cent will experience symptoms in the period 20-40 years after their original infection. In Ireland, these figures imply that 3,000 to 4,200 survivors of polio either have developed the condition or will develop it in the near future. Further studies are providing evidence that some people who did not suffer paralysis at the time of their original infection are now showing the symptoms of neuronal damage incurred at that time.

REPORT FINDINGS

The report ‘Polio – The Late Effects Reality’ is a survey of the experiences, needs and requirements of LEP sufferers in Ireland today. It quantifies the extent of the problem and provides a clear basis from which to plan workable programmes to manage the treatment of Polio Survivors into the future. Some 224 Polio Survivors were interviewed in detail by Occupational Therapists nationwide for the report. The main findings are outlined below.

Who suffers the Late Effects of Polio?

The report finds that LEP sufferers are found in all areas of Ireland and are not concentrated in any particular sociological grouping. Respondents vary in age from 37 to 87 with the average age being 60. The main bulk of those interviewed were born in the period from 1940 to the mid 1950s. All experienced paralytic polio, usually in early childhood.

Over 50 per cent of the sample began to experience the symptoms of LEP between the ages of 45 and 59, while a further 25 per cent started to encounter difficulties in their 60s. These are not old people in today’s terms and, therefore, it cannot be suggested that the problems experienced by Polio Survivors are associated with old age. Rather, it can be seen that polio is a long lasting and debilitating disease that can cause unforeseen effects many years after the initial paralytic phase.

Progressive Deterioration

The only fact that holds true for all respondents to the survey is that LEP is progressive and will get worse. Medical opinion concurs with this finding. Respondents views on what the future will bring for them are largely a reflection of their individual ability to cope with the situation. While the vast majority have an ambition to remain independent in the next five years, most recognise that the inexorable progression of LEP will necessitate the use of aids, appliances, physiotherapy treatment and carer/home help assistance amongst other services, in order to maintain self-sufficiency.

People are finding most difficulty with walking, bathing, getting out of their homes, shopping and accessing the community. Bathing and mobility are the two areas in which the need for aids and appliances is most pressing.

The progressive nature of LEP is illustrated by increased difficulties experienced by respondents in the area of mobility. Five years ago 35 per cent required assistance, aids or an altered approach in order to walk. Now 67 per cent of respondents are experiencing problems at this level. Also, while half the sample had no difficulty in walking without sitting to rest five years ago, only 14 per cent can do so now.

One of the most serious consequences of reduced mobility is the likelihood that it will lead to increased social isolation with its attendant effect on mental health. For a person who has been able to get out and about without difficulty for over 30 years now to have to plan every move, as well as ask for assistance, is a major and defining lifestyle change.Again, it must be remembered that most of the respondents to the survey are only in their 50s and 60s and have much more to contribute to their communities. One of the key issues raised by the study was the need to ensure the availability of appropriate, adapted transport for LEP sufferers.

Employment and Financial Issues

Over half of the paralytic Polio Survivors interviewed felt that their education had been detrimentally affected by the condition.The report findings show that this reduced their chances of securing good employment in later life. Now that many are experiencing the debilitating effects of LEP, and are, therefore, less mobile and more prone to fatigue, they are doubly disadvantaged in that they feel unable to undertake a full week’s work. Consequently, the unemployment rate of those respondents who are at working age stands at 47 per cent.`

Given this statistic, it is unsurprising that 56 per cent of interviewees can only manage financially with some or great difficulty and one third are living at or below the statutory minimum wage. As aids, appliances and physiotherapy treatment that would both mitigate the affects of LEP and slow its progression are quite expensive, the issue of funding for these items, and other necessary services, is crucial for sufferers.

Health Services -Access and Information Issues

One of the major issues raised by survey respondents is the lack of easily available information regarding services and benefits that may be available to them. It was felt by many that the health services are geared towards people who are either very sick or very poor. Existing services are often not flexible enough to provide proactive or preventive interventions with the result that most LEP sufferers feel they will only receive assistance if their condition is acute.

The experience of respondents is that those health professionals who should be able to advise and assist regarding services and entitlements are either ill-equipped to do so or are not properly trained. Where services such as physiotherapy, neurological assessment or occupational therapy were provided it was found that these were often not followed up at a later date or connected together in a cohesive manner to form a case plan. Improvements in levels of co-ordination would increase the combined knowledge of doctors, therapists and neurologists regarding the total needs of LEP patients.

Current Government view on Polio and LEP

As it stands the Government, through the Department of Health and Children, does not list Polio or LEP/PPS as long-term illnesses. The findings of ‘Polio – The Late Effects Reality’ and medical opinion contradict this view. The report also highlights the inadequacy of existing state health schemes in managing the needs of LEP patients. Respondents to the survey demand to be treated in the same way as others with debilitating neurological diseases such as Multiple Sclerosis, Motor Neurone Disease and Muscular Dystrophy.

It is clear that any individual who has experienced a paralytic episode of polio and has been diagnosed with LEP/PPS should be entitled, in their own right in the first instance, to a Medical Card.

Equally clearly, there is a pressing need for standardised objective criteria in the allocation of benefits and services such as Medical Cards, the Disabled Persons’ Housing Grant, aids and appliances, physiotherapy treatment and carer/home help assistance amongst other services. The experience of respondents is that different Health Boards operate in different ways when making decisions in this area.

Costs of Provision of Aids and Appliances

As part of the report survey, Occupational Therapists quantified the amount of aids and appliances required by respondents over the next five years. These aids include, inter alia, callipers, adapted footwear, wheelchairs, grab rails and bathroom equipment. It should be remembered that aids and appliances slow the rate of progression of LEP and will, therefore, reduce the cost of acute/long-term care now and in the future.

The average projected cost of all items assessed was € 5,450 per respondent at 2003 prices. As the current Post Polio Support Group membership numbers 450 it can be estimated that it will cost € 2.4m to satisfy all their needs for mobility and aids to daily living over the next five years. Extrapolated across the whole of the potential LEP population in Ireland this amounts to € 23m. It should be noted, however, that the true cost that would accrue to the State would be offset by the amount that carers donate to the State through their unpaid services, estimated by the report at € 12.65m per annum. It can, therefore, be argued that through these hidden contributions the State would still be € 40m better off over five years even if all aids and appliances were centrally funded.

The cost to the State might be further reduced if the regulatory authorities can determine why the prices of aids and appliances are substantially higher in Ireland than in the UK and Europe. This differential may explain why some UK dealers are reporting a cross-channel trade for the higher priced items such as wheelchair hoists and car adaptations.

At present, the Post Polio Support Group administers the distribution of money raised through fundraising, voluntary donations and Health Board grants for the purpose of purchasing aids. The amount administered in 2002/3 was € 61,000, which does not come close to meeting requirements.

This summary report has been produced by Philip Connelly for:

Post Polio Support Group,
Unit 319 Capel Building,
Marry's Abbey,
Dublin 7, Ireland
Tel: +353 (0)1 873 0338
Email: info@ppsg.ie
Website: www.ppsg.ie