The often challenging and complex symptoms of PWS can involve many different professionals who may not have come across this rare condition and its impact before and may also find that a multidisciplinary approach is required in order to address the multiplicity of health and social effects it has on the individual and those around them.
PWS is not just a learning disability, nor just an eating disorder, nor just about challenging behaviour, and it is very important for professionals to be able to understand the underlying genetic dysfunctions in PWS in order to be able to prepare an appropriate response, care package or treatment structure for someone with PWS that is safe and individualized thereby avoiding any unintended costly consequences. PWS remains a life limiting condition which can ultimately cause death if not effectively managed.
At PWSA we have over 30 years experience working with professionals in the fields of health, education, social services, day care, supported living and residential care. We offer:
The right to eat?
Professionals may find their judgement called into question from various quarters on the subject of whether or not it is right to allow a person with PWS to eat what they want, or not. The section on ethics and legal issues addresses this topic.
For information relating to your own professional field, please follow the links below.
There are many different health care professionals who may be involved in the care of someone with PWS throughout their lives: paediatricians, geneticists, endocrinologists, orthopaedic specialists, physicians, sleep physicians, ophthalmologists, GPs, nurses, dietitians, speech therapists, psychiatrists, psychologists, health visitors, occupational therapists and physiotherapists. Hence a multidisciplinary team approach is the best, if this can be achieved.
Providing the appropriate level of care for a person with PWS can sometimes challenge much of what would be deemed appropriate for any other person with learning disabilities, and sometimes the ability of the person with PWS to cope with daily life is seriously overestimated. This is often because the person presents as articulate and able to respond to questions in a reasonable manner, especially with regard to their dietary needs. Unfortunately, this often masks a much lower level of comprehension and ability to put theory into practice.
Providing the appropriate level of care for a person with PWS can sometimes challenge much of what would be deemed appropriate for any other person with learning disabilities and, in mixed ability and condition settings, the needs of the other residents must always be considered.
Because of the rarity of PWS,it is uncommon for a school to have more than one pupil with the syndrome - although this is more likely in special schools. Managing the complex needs of the syndrome, whilst taking into account the needs of all the other pupils at the school, can therefore be difficult, particularly around access to food and supervision at lunch-times and break. In most cases, teacher support will be needed for varying lengths of time, depending on the needs of the pupil with PWS. Nearly every child known to the PWSA UK has a Statement of Need (Record of Need in Scotland).
Most people with PWS are more than capable of work, whether voluntary or paid, and are just as keen as other people to contribute to their communities. So it may be surprising to learn that, to date, very few people with PWS have full time jobs. This is partly because of the complex nature of the syndrome and partly because trainers and employers are not always aware of the particular environmental boundaries that may need to be put in place for people with PWS. Without which, the person with PWS may well be "set up to fail" from the outset.