Polio - The Late Effects Reality

Additional Information

The process of conducting the survey involved detailed, and sometimes personal discussions by the Occuational Therapist with each respondent. This engagement was sometimes lengthy – up to four hours, in some cases. Woven into the conversations were threads of a bigger picture of the respondents’ lives, much of this being extremely valuable as it put the respondent’s circum-stances into context.

The key issues reported by the OT’s, in order, were:

1. Access to Services and Lack of Information about Services
2. Eligibility and Entitlements for Services
3. Social Isolation
4. Financial Issues
5. Lack of Preventative Measures
6. Polio History
7. Work and Access
8. Nursing Home Residents
9. Travelling Community

1. ACCESS TO SERVICES &LACK OF INFORMATION ON SERVICES

It was found that only a minority of respondents knew how and where to seek for information.

As a group, the respondents felt that, in all cases, focus should be on ability, rather than disability. It was felt that existing services are often not flexible in coping with people who have a minor disability or issue and they cannot receive assistance until their problem becomes acute.

Accessing services also means dealing with the psychological side of making services and facilities accessible, e.g. accommodating people who may be embarrassed or upset at now having to use facilities. Generally, it was felt that service providers did not give enough consideration to issues surrounding dignity and pride.

The largest number of comments and requests for assistance and help concerned the lack of information regarding:

• Existence of various services
• How to access those services
• Solving basic household problems

Specific issues that kept re-occurring were:

• Availability of orthotics, orthopaedic footwear and specialist clothing, e.g. Vasotherm stockings
• Availability of Physiotherapy, Massage Therapy, Home Help, Personal Assistants
• Availability of Community Occupational Therapists, Dieticians, Chiropody, Homeopathy, Alternative Therapies
• Availability and complexity of Disabled Person’s Grant (it was noted by many that criteria vary from county to county)
• Availability of Social Worker service to provide definitive information on entitlements
• Lack of information on transport options and availability of tax relief for car adaptations and car
• Why the Disabled Driver’s/Passengers Badge can not be used for toll bridge/road exemption as is the practice in some other EU countries?
• Drugs refund scheme
• Different self-help/health promotion tools available
• General safety issues, e.g. availability of panic buttons
• Education of services providers on the needs of LEP clients
• Lack of training in the use of aids and appliances
• Help in solving simple problems, such as, ability to change length of time the telephone rings
• List of clinics/services throughout the country

2. ELIGIBILITY AND ENTITLEMENTS FOR SERVICES

Respondents reported that, due to the difficulty of financing aids and appliances, many do without equipment that is needed either for medical and/or social reasons. In consequence, they are unable to adopt a preventative/proactive approach to their condition.

It was felt services are inadequate, even where they exist. For example, there is little follow-up and no training on how to use aids and appliances. This means that aids and appliances are often left unused, as they are either found to be unsuitable or the person lacks the knowledge of how to use them.

Medical professionals are not proactive/practical in their approach to solving problems for LEP patients, e.g. referrals to Neurologists who monitor, rather than rehabilitation specialists who can offer solutions.

3. SOCIAL ISOLATION

It may be argued that this area is one of the most important in the report, although completely subjective in content. It is the one area that is not quantifiable, as all the findings that are shown below were collected as comments from the survey respondents by the Occupational Therapists in the course of the interview stage of the process. In preparing the report, all the comments and recorded detail have been correlated and, in some cases, aspects deleted that could potentially identify the survey respondents.

It was found that social contact is now an increasing issue due to ageing of the LEP population. Prior to the onset of LEP, most respondents stated that they had enjoyed a full life. Now they find that the combination of age and LEP are quite restrictive. Many if not most of the survey respondents feel socially isolated. Possible factors include:

1. Country vs. city living
2. Level of disability
3. Working or not working
4. If they have relatives living with them
5. Mental Health issues
6. Transport – suitable with assistance
7. Finance (mostly for transport)
8. Lack of information about how to get assistance for social contact
9. Lack of confidence

Respondents often stated the need to get away from their families and have a break, and to give their families a break from the caring role.

Respondents said they were unaware of others in the same situation and felt that some form of peer support would beneficial.

It was noted that, as mobility decreases, social contact decreases. Transport is a key issue and this is directly related to financial issues around socialisation in general.

Respondents still able to drive had an issue with respect to the type of wheelchair used, as well as getting it in and out of the car. A further issue was the manual versus powered wheelchair argument as well as the affordability of new vehicles together with the applicable criteria under Revenue Commissioner Regulations (Vehicles for People with Disabilities – Tax Relief Scheme,VRT 7, March 2002).

Many people do not see a way out of the social isolation issue. This, it was noted, was compounded if the respondent did not have a personal assistant or carer to assist them when out, i.e. not confident enough (mobility wise) to access public buildings and general environment without assistance.

It was felt that respondents in country areas enjoyed more support from neighbours and in general have more community support and assistance. This was not found to be true in the city and urban environments.

Those who have no close relatives are often anxious and have more and more difficulty getting out, as they grow older.

4. FINANCIAL ISSUES

There was general concern amongst respondents that, in seeking further financial advice from State or semi-state bodies, they would endanger any benefits and entitlements they already enjoyed.

Transport was found to be expensive and there was general concern about the cost of purchasing a suitable vehicle, even amongst those in receipt of tax relief on fuel and car purchase.

Respondents were concerned and need information about preparing for retirement.

Respondents over retirement age, who are in receipt of pensions, found that the amount does not meet their needs, which are increased due to their disability, i.e. fuel, transport, assistance, etc. Respondents also noted that providers, due to their circumstances, treated them as second class citizens.

5. LACK OF PREVENTATIVE MEASURES.

Respondents reported a lack of knowledge surrounding Poliomyelitis and LEP by medical professionals in general. This means they are neither able nor properly equipped to provide appropriate advice.

It was noted by the Occupational Therapists that many of the respondents were either in the early stages of acceptance or in denial of LEP meaning that they are either unwilling or unable to engage in prevention of their symptoms.

It was further noted by the OT’s that there was a lack of awareness by respondents of the need to have their symptoms assessed and, also, of the need to conserve energy.

It was found that compensatory techniques adopted by respondents lead to subsequent additional problems for two reasons:

• Lack of acceptance of their condition before they are forced to
• Lack of suitable services to provide preventative measures when required

6. POLIO HISTORY

The OT’s found, in the main, that respondents wanted to talk about their original Poliomyelitis history, how it was managed and what worked best.

It was noted that active physiotherapy and gentle massage worked well, as opposed to those who had full body casts and were kept still. Respondents felt that this information may be of use to foreign countries still dealing with active Poliomyelitis.

In a few cases (less than 5), it was reported that infection was as a direct result of the vaccine.

Respondents reported that siblings who were healthy all their lives are now demonstrating symptoms of LEP.

7. ACCESS TO WORK AND WORKPLACES AND LEGAL REDRESS

Some respondents gave verbal evidence that LEP was not being recognised by employers and that their statutory rights under employment laws were being infringed.

In many cases, it would appear that neither respondents nor employers are aware of the grants that are available for the adaptation of the workplace.

Many respondents reported that they are unable to undertake a full week’s work due to fatigue.

8. NURSING HOME RESIDENTS

Due to the status of LEP under social and medical welfare legislation, residents of Nursing Homes enjoyed very few entitlements.

Some of the more elderly respondents were anxious to know how to get placements and information in general about moving to a Nursing Home

9. TRAVELLING COMMUNITY

It should be noted that there were no members of the Travelling Community amongst the respondents. However, it would be fair to assume that they would experience the same problems as members of the community at large, as well as further difficulties associated with their increased marginalisation.