We, as individuals and families affected by subacute sclerosing panencephalitis (SSPE), submit this statement to you in defence of the right to life of 2,000 people in Turkey. If a solution is not found soon and the necessary precautions are not taken, the affected public, public institutions and the Ministry of Health should immediately set out to find a treatment to stop these deaths that we are witnessing knowingly and helplessly. With every day that passes, this disease reduces the vital functions of our children. Therefore, the cooperation of the Ministry of Health, TUeBİTAK and relevant research institutions, the development of SSPE treatment and securing the necessary budget, the Ministry of Health and other relevant ministries regularly presenting the studies conducted on this issue to the public are urgently needed.
On the other hand, while definitive treatment studies are underway, there are also problems in the activities that can be carried out for the provision of basic health services and rehabilitation support. In places where SSPE disease is prevalent, accessibility to paediatric neurology and other relevant departments must be ensured, and a sufficient number of doctors should be assigned for early diagnosis and follow-up of the disease. SSPE patients and others in a similar condition cannot visit health and educational institutions in every situation.
Unfortunately, there are inadequacies in the reimbursement of expenses for SSPE patients. The inadequate reimbursements from the SSPE Insurance Fund, which are far below market prices for goods and services (for example, the subsidy paid by the SSPE Insurance Fund for nappies only covers about 1/3 of the cost), the significant financial burden of medicines/vitamins and examination fees are a major challenge for SSPE patients and their families.
In caring for SSPE patients, procurement of the necessary tools, equipment, lifts and similar medical supplies for mothers whose bodies are deforming must be ensured. Efforts should be made to collect material needs through a collective system that allows those in need to receive them from those who no longer need them and to ensure their proper use through inventory.
The lack of provision of the necessary technical equipment for feeding SSPE patients (medical equipment such as a bed for positioning, a chair, etc.) is a problem for families. Lack of supply of some essential items such as bed protectors, wet wipes etc. is a major problem for the families. It is necessary to resume the supply of nappies to SGK as before and to increase support in view of the rise in prices due to the exchange rate.
In families where there are SSPE patients, arrangements must be made for regular, periodic psychological support for all family members, especially mothers, and these rehabilitation services must be provided. Training and support to educate about care and the disease is necessary. Due to the uniqueness of the disease, parents are sometimes not sufficiently informed about the subject. In addition, considering the nearly 20 years of intensive caregiving, efforts should be made for employment and pension entitlements for the parent or family member, and studies should be conducted for the employment of a family member in the public sector for economic support. Regular studies on recovery and psychological support for parents should be organised.
Due to the difficulty of providing nursing care, physiotherapy and other support services for people with movement difficulties such as SSPE and the inadequacy of related support, FTR services, reports and other support services should be provided to the homes by visiting the homes, renewing medication and transmitting relevant reports to the homes through a mobile team or online. Arrangements should be made for physiotherapists to provide home-based services for people who need physiotherapy so that they can properly utilise health services.
Care fees and carer's allowance for severely disabled people such as SSPE should be treated independently of the income status of the household and arrangements should be made to ensure that they are not cut off under certain limits or not taken out of the home for known procedures. Legislation should be put in place to allow those who have been caring for patients with SSPE or similar conditions for a long time (7 years or more) to retire. Even if their children have died, mothers who have been burdened with caring for 7 years or more should be given pension rights by paying their SSC premiums from the public budget or grant funds so that they are not victimised in their old age.
The request for an ambulance for SSPE patients should be met immediately, especially for hospitalisation, examination and intensive care procedures, professional assistance should be provided to avoid possible injuries and other difficulties. Charging and generator services should be provided for patients who operate some equipment with electricity in the event of power outages, or these individuals should receive special notification of power outages.
For people with SSPE and carers who do not own their own home, efforts should be made to provide interest-free loans and first-time homebuyer relief. Alternative support and solutions to housing problems should be found for tenant households.
In families where chaos has been created due to PREVENTABLE DEADLY DISEASES such as SSPE, school attendance of other children in institutions such as Darueşşafaka should be ensured and scholarships for these children should be prioritised.
We expect a solution, treatment and hope against our children who are melting away before our eyes, hopelessness and helplessness.
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