Cerebral Palsy in South Africa

Newsletter-July-2014-1

What is Cerebral Palsy?

  1. NewsCerebral means having to do with the brain and palsy means problems or weakness with using the muscles.
  2. Cerebral palsy (CP) is caused by abnormal brain development or damage to the developing brain
  3. CP affects a person’s ability to move and keep their balance and posture
  4. Often the condition happens before birth (pre-natal) or shortly after birth (post-natal) and sometimes due to complications during birth (peri-natal).
  5. CP causes different types of disability in each child. It can vary from being a little clumsy or awkward to being unable to walk at all.
  6. CP cannot be cured
  7. Although the brain injury that causes CP does not progress,the condition of some severely affected kids can deteriorate since their spasticity and growth happen in parallel • All people with CP have problems with movement and posture.
  8. Many people with CP also have related conditions such as intellectual disability; seizures; problems with vision or hearing, or speech, changes in the spine; or joint problems, e.g. contractures.
  9. CP is normally classified according to the main type of movement condition involved. Depending on which areas of the brain are affected, one or more of the following movement conditions can occur: Stiff muscles (spacticity), Uncontrollable movements (dyskinesia), Poor balance and coordination (ataxia).
  10. CP is the single largest cause of childhood disability.

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Cerebral Palsy in South Africa

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Children with cerebral palsy living in poor and rural areas in South Africa are a particularly neglected and underserved group. Although they qualify for government assistance in the form of “Care Dependency Grants”, this money is usually the family’s only source of income and not all the money is spent on the child. Caring for a child with cerebral palsy involves many additional costs not associated with non-disabled children trips to clinics and hospitals, special food, and disposable nappies/diapers. The children remain dependent on their mothers for feeding, bathing, dressing and toileting, placing a heavy burden of care on mothers. Mothers report feeling isolated, lonely and depressed in coping with day-to-day living. Families and caregivers have little or no access to support services, such as peer support groups and networks. Studies have shown that less than 30% of children who need rehabilitation in South Africa actually receive it.

Not only is transport to the hospital costly because of the distances involved, but once people get there they find that there are not enough therapists to help them, and the therapists may have little or no experience in working with children with cerebral palsy. In addition, a lack of financial resources at the hospitals means that there are long waiting lists for basic equipment such as wheelchairs, buggies and standing frames. As a result children up to the age of 14 years are still being carried on their mothers’ backs. The global prevalence of CP is between 0.2 and 0.3 percent with a marked difference between developed and developing countries. South African studies indicate a high prevalence rate for CP, between 1% and 8% Causes of CP differ in developed and developing countries. In developed countries prenatal causes are most common whereas in developing countries, such as South Africa, causes are more likely to be perinatal (i.e. asphyxia or lack of oxygen during delayed or complicated labour, infections frequently Tuberculosis Meningitis associated with HIV) and postnatal (i.e. uncontrolled epilepsy, head injuries, near drowning).

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Care and Interventions for Persons with Cerebral Palsy

girlAlthough cerebral palsy is a lifelong disability,there are many interventions that can help reduce its impact on the body and the individual’s quality of life. An intervention is a service that aims to improve the condition of cerebral palsy and the day-to-day experience of the person living with it.

Children with cerebral palsy should be supported by a team of professionals including health professionals and community-based support services who work together to help the child and family reach their goals. Ideally CP assessments should be done by a multi-disciplinary team (MDT) consisting of a medical doctor (assessment, diagnosis, medication, surgical intervention), occupational therapist, physiotherapist, speech therapist, audiologist, dietician (feeding, growth monitoring), social worker (grants, counselling) and psychologist.

Access to CP services at the primary health care level depends entirely on the available medical and rehabilitation service and skills at the primary and secondary health care level in a particular area and this varies between provinces. Usually rural communities do not have experienced medical and therapeutic staff trained in the assessment and management of CP. Overall there is a severe lack of rehabilitation therapists in South Africa for managing CP in the public sector. With 38% of the country’s population living in rural areas and mainly dependent on clinics at primary health care level, all aspects pertaining to the care and rehabilitation of children with CP are often severely neglected.

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The NCPPDSA and Persons with Cerebral Palsy

Coming to South Africa! Advanced Biomechanical Rehabilitation (ABR): A lifechanging new technique in the rehabilitation of children with CP The ABR technique is designed to specifically address weak soft tissue and connective tissue structures. It is a home-based program that is taught to parents or care givers and then practiced 30 minutes to one hour per day in the home environment. It works by improving the overall quality of the body’s connective tissue system. Through a specialised method of repetitive application of pressure, an equally repetitive stimulation of the soft tissues is achieved. The body reacts to this stimulus, by remodeling and regenerating the areas that are being addressed. This is why ABR is able to dramatically improve respiration and structures responsible for speech and swallowing. Metabolic functions are improved. General skeletal alignment and positioning ensues, restoring mobility and allowing for new or renewed motor functions. Cognitive advancements, being dependent upon the general health of the individual, also follow.

Watch this short video illustrating the profound benefits of the ABR method on children. This is just a small sample of children, but every child with CP, especially those who have severe CP, will benefit from the ABR Method. Watch their faces and see how the whole child benefits:

ABR Denmark- from struggling to thriving from Diane Vincentz on Vimeo.

Recent prospective studies presented in 2012 at the International Cerebral Palsy Conference in Pisa, Italy have shown that ABR significantly improves quality of life and function in children (between the ages of 5 and 18 years) with the most severe forms of CP. This is very encouraging, since few therapies are able to change the course of CP after the age of 5.

Increasing the quality of life and function in a person with severe CP has far reaching effects. Family joy and coherence improves as the burden of care of the sick family member is decreased. Nursing intensity decreases (through improved swallowing, sleeping and metabolic functions), thereby decreasing medical costs.

The affected individual is able to participate more in life experiences new ways to observe and participate in life.

Supporting the NAPCP

The National Association for Persons with Cerebral Palsy (http://www.napcp.org.za) is an affiliate of the NCPPDSA with the NCPPDSA playing a strong supportive role in respect of the NAPCP who in turn have many schools for children with CP and provincial associations for persons with CP under its wing.

In an extensive way cerebral palsy associations are involved in the care and rehabilitative services required at local level and as such offer a vital safety network of intervention to persons with CP.

Casual Day

The NAPCP is a national beneficiary of The NCPPDSA’s Casual Day, the biggest fundraiser for persons with disabilities which has been running for 19 years.

This article is an excerpt from the NCPPDSA July Newsletter. Download the full newsletter (pdf) here.

About the Author

Able online

Hi, I’m Able the Casual Day mascot and ambassador for disability. I encourage you to see the ABILITY in people and not the dis-ABILITY. We’re all able, we can all live our fullest lives if the barriers are removed. Join me each year, on the first Friday of September and raise funds to support organisations that render services in the field of disability. This year Casual Day falls on Friday, 7 September. Your donation of R10 for a sticker makes a difference and improves lives all across South Africa.

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