One cannot escape noticing the vast amount of media attention that
has been focused on Autism. The impact of this publicity has forced
the Government and state bodies to respond positively to the needs
of those with the condition.
Recently the association made a submission to the Department of
Health "Your Views about Health" Policy Document. The association
also made a similar submission through the Neurological Alliance
Association. Hopefully these essential services (affecting Nf sufferers
and their families) will not be overlooked when the Department and
Government agencies are formulating future policies on the Health
Services.
The following is an extract from our submission to the Department
of Health Policy Document "Your Views about Health":
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Easier access and shorter referral times
to review by a Consultant by increasing the number of Consultants. |
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Introduction of multidisciplinary teams in
specialist centres for the management of Nf to include Dermatology,
Orthopaedics, Neurology and Genetics. |
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Counselling services to be available to
sufferers and their families immediately on diagnosis. |
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Referral from hospital / community services
to the relevant patient support groups on diagnosis where appropriate
and to provide a consistent level of funding to these groups
to carry out their work effectively. |
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Automatic entitlement to a GMS card. Eligibility
to be based on the needs of sufferers and not on income. |
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Schools Medical program to include where appropriate
Screening for Genetic Disorders. E.g. Neurofibromatosis. |
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Access to comprehensive information on genetic
conditions to include available treatment within and outside
the country, entitlements under the health schemes also information
on patient support groups and other relevant voluntary agencies. |
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Co-operation between hospital-based and community-based
services with emphasis on the needs of the patient. |
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Ensure that sufferers of Neurofibromatosis
will not be subjected to discrimination and can be confident
and open about their condition with employers when securing
employment or with insurance companies in respect of health
or life cover without preconditions i.e. payment of higher premiums. |
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Access to a second medical opinion where
requested. |
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Access to specialist treatment outside the
country where such is not available in Ireland. |
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Referral from hospital / community services
to the relevant patient support groups on diagnosis where
appropriate. |
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Acceptance by employers the need for flexibility
and facilities in the workplace to enable people severely
handicapped by Nf to secure employment for as long as possible |
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Regular monitoring and access to counselling
services in response to the progression of the condition. |
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Accesses to respite care facilities in
and outside the home. |
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Accurate information, support and counselling
for families and voluntary care givers. |
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Review of the regulations on tax exemption
and driving for disabled persons to embody sufferers of
deformities arising from Neurofibromatosis. |
