Polio - The Late Effects Reality

SUMMARY OF FINDINGS

The main findings of the survey are:

1. Reduction in Physical mobility

Overall, most respondents have experienced some reduction in physical ability over the last five years in a range of areas, mostly around mobility. The pace of this change does appear to be relatively slow with most of the change occurring in from None to Mild, some change from Mild to Moderate and a very small amount of change from Moderate to Severe.

People are finding most difficulty with walking (without sitting to rest), bathing, getting out of their homes, shopping and accessing the community. Bathing and mobility are the two most pressing issues with respect to physical assistance - aids, appliances and services.

2. Population diagnosed with the Late Effects of Polio

There are 74 (34%) respondents with a clinical diagnosis. Most (48 (68%)) were diagnosed by Dr. Orla Hardiman at the Beaumont Clinic in Dublin but there was also a wide variety of other medical practitioners who made diagnoses. The earliest diagnosis of LEP reportedly recorded in Ireland was in 1960, with the majority starting around 1990, with the bulk being in the last five years.

3. Links between mobility &access to the built environment with Transport, Employment and Social Isolation.

It was established beyond all reasonable doubt that there is a definite link between decreased mobility and social isolation. This is not helped by the dearth of adapted or suitable public transport outside of Dublin and other cities, i.e. low floor buses. Benefits relating to mobility need to be made available regardless of age. As one respondent said "Why don’t they pay mobility allowance to people over 65? Free travel isn’t much good to folk in a wheelchair, particularly in the country".

Issues that need addressing include:

• • Information on reduced mobility
• • Reduced access to the external built environment
• • Issues raised around employment
• • Social isolation and the potential for mental health problems. (Information on respondents’ mental health was not gathered in the survey.)

4. Underlying financial issues

• • Many respondents, 84 (38%), are living with their children, many of these still dependent.
• • 63 (31%) respondents appear to be living at or below the equivalent of the statutory minimum wage level of € 6.35 per hour (experienced Adult worker – August 2003), irrespective of what their ages are.
• • Respondents in general feel the need for information about preparing for retirement. Many are concerned about seeking financial advice in case they lose some of their existing entitlements.
• • People under 65 on State benefits and those on pensions are finding these do not meet their needs. The amount is too low and they find they are treated like second-class citizens, i.e. the attitude from those dealing with them is poor.
• • Cost for individuals buying aids and appliances can be high when wear and tear and the need for upgrading is taken into account.
• • The costs of aids and appliances is some 30 – 50% higher in Ireland than UK or other neighbouring EU countries (Marketing Matters, October 2002).

5. Lack of a planned approach – services and information are uncoordinated and ad-hoc.

There are a number of key aspects to this issue:

• • Respondents AND health workers knowing what services are available and possible.
• • Respondents AND health workers knowing what entitlements are available and how they are determined.
• • Lack of effectiveness of treatments offered when they are unlinked, uncoordinated and not followed-up.

These are all aspects - equitable access, eligibility, access and poor integration of services within the system - already highlighted as weaknesses in the Health System in the Government 2001 Health Strategy (p. 47 - 48).

It would appear that, in many cases, those who should be able to advise are either ill equipped to do so or not properly trained. Few of the respondents knew, on their own volition, where to gain information. It was felt by many that information regarding benefits, allowances and entitlements is treated like a state secret, rather than being easily accessible in the public domain by right.

It was found that making services user friendly also means dealing with the psychological side of making services and facilities accessible, e.g. accommodating those who may be embarrassed or upset at now having to use facilities. Consideration of issues surrounding dignity and pride must be taken into consideration. This issue relates to the Health System being geared around acute and emergency situations and, also, that respondents perceive that the need to use such systems signals their own decay, which can be distressing.

6. The Government ’s view on Poliomyelitis and LEP

Currently, neither Poliomyelitis nor LEP are viewed by the statutory authorities as a long-term neurological illness. This view can and has been proved to be false both in fact and substance and respondents now are demanding that they be treated in the same way as others with debili-tating neurological diseases, i.e. Multiple Sclerosis, Muscular Dystrophy.

Furthermore, as may be determined from some of the verbal evidence gathered during the compilation of this report, there is a need for consistency in the application of regulations concerning the allocation of services, i.e. Medical Cards, Disabled Persons’ Housing Grant, etc.

It would further appear that respondents who may have to enter Nursing Homes do not have entitlements – although this view does not take into account possible subvention.

There is a need for standardised objective criteria across the system when allocating services, i.e. Medical Cards, Disabled Persons’ Housing Grant, Primary Medical Certificate, etc.

7. Lack of Service Co-ordination

Many respondents reported that they were in receipt of a number of services, e.g. physiotherapy, neurological assessment, occupational therapy, but that these were often not followed up at a later date or connected together in a cohesive manner that would form a case plan. This leads to a lack of knowledge amongst the providers - GP’s, therapists, neurologists, service providers, etc. - of the total needs of the service user.

There are also implications here for cost, as many treatments are started and not continued. For example, there is little follow-up or training on how to use aids and appliances. This means that many aids and appliances are left unused as they are either not suitable or the person does not know how or have the confidence to use them.

In turn, it was found that there is a great lack of awareness among the respondents concerning the assessment of symptoms and the need to conserve energy, so as to maintain longer lasting quality of life (Young, 1994). Much can be done to alleviate and manage symptoms as well as to assist the maintenance of an independent lifestyle. Studies (Peach & Olejnik, 1991) show that proper management of symptoms has a significant effect on the rate of slowing deterioration compared with those who do not manage their symptoms.

8. Emergency mentality vs.supporting wellness

The Irish Health System is geared to "sick" people – those who have acute symptoms and are ill. Often, existing services are not flexible in coping with people who have a minor disability or issue; they are unable to receive assistance until their problem is acute.

For those with a mild disability or wanting to seek assistance from the system, it appears that people need to be classified as "sick" or "poor" or both before being eligible for assistance. People who have a disability may need assistance from time to time but do not see themselves as being "sick".

An additional factor is that many of the respondents are in the early stages of acceptance of LEP and are or may be reluctant to engage in prevention of their symptoms (Bruno & Frick, 1991). Encouragement and incentives by the service providers are needed, so that there is an early take up of preventive measures, i.e. aids and appliances, taking regular rest breaks, diet, exercise and possibly alternative therapies.

Creange and Bruno (1995) have also showed that "the proactive management of LEP by the individual has been shown to be greatly enhanced by support from understanding family and friends".

It was found that many of the respondents have difficulty in adopting a preventative/proactive approach to their condition as they do not have finances to buy aids and appliances. Evidence of this may be seen in the annual allocation of funds that Post Polio Support Group allocate to aids, appliances, respite, and therapies (see Tables 38a & 38b). This often means that many people have to do without. This can be either through lack of knowing that aids and appliances can/will help, or because they do not have the finances to buy their own equipment.

9. The Cost

The average cost per respondent over the next 5 years of meeting all the needs for aids and appliances equates to some € 5,450 at 2003 prices. The Post Polio Support Group has a membership at time of writing (August 2003) of 450, so it can, therefore, be deduced that, to satisfy all their needs for mobility and aids to daily living, the members need some € 2.4m at 2003 prices.

Extrapolated across the whole of the derived LEP population in Ireland (see Introduction), this amounts to around € 23m being needed across the next 5 years to satisfy the perceived needs of those with LEP. As previously mentioned (see Table 42), 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 coffers through their unpaid services, i.e. € 12.65m per annum. It can, therefore, be argued that, through these hidden contributions to the State, even if all aids and appliances were funded by central Government, the State would still be some € 40m better off.

However, the cost to the State may well be reduced if the regulatory authorities can determine why there is such a high price differential between prices prevailing in the jurisdiction and those in the UK and other neighbouring EU states. This differential may explain why some UK dealers are reporting a cross-channel trade for the higher priced items, such as wheelchair hoists and particular car adaptations.

10. General

The survey and its conclusion paint a picture of a portion of Irish society that will almost entirely disappear within the next 35 years. Demographic and morbidity trends show that the main bulk of those who were affected by paralytic Poliomyelitis and/or LEP will have died by 2030.

However, the overwhelming impression that is gained from both the analysis of data as well as the verbal evidence is one of isolation, as well as being fearful of the progression of LEP and of the State’s attitude toward their plight