Saturday, June 9, 2012

What comes next?

Looking through some papers that have recently made it to my desk, I was reminded by this one just how difficult it is in looking forward and anticipating the needs that our young children will encounter in their lives.  Entitled "Complex Care Needs - PWS" the author of this paper makes the following reflection:

When thinking about multidisciplinary care, the scenario often involves elderly patients with a multitude of chronic diseases. In focusing on a completely different age-group, it was amazing to discover the amount of forward thinking that goes into the care of those with congenital disorders and complex care needs. 

The author, an Australian medical student in her final year, was following the case study of a very young boy.  She noted that his parents had actively engaged with a team of professionals for their son, namely: a paediatrician, GP, endocrinologist, dietician, speech pathologist, physiotherapist and occupational therapist.  The author goes on to point out that:

"Not only do goals and requirements of care constantly change with increasing age and ongoing development of the child, but parents and practitioners are constantly having to forward think about contingencies for any potentially arising complications in addition to putting into place plans for what will need to happen when the parents themselves pass on and their offspring will still require care."

And I agree with her.  There is a huge amount of forward planning that has to go into a child with any disability, let alone PWS, in considering the future quality of life that this child might have.  I would go further and say that all of this planning relies on the ability of the parent/s to be able to work through a quagmire of red tape and bureaucracy in order to get results.  How very difficult it is for any parent to find the right agencies who will provide support,  help and medication for their son or daughter.  And that's just in our Western countries where, somewhere along the line, help can be found.

How much more difficult is it for parents in countries where this help is not forthcoming, or it is too difficult even to find the start of that long and winding road.    IPWSO is very aware of this and has its own large network of professionals in over 90 countries around the world which may be the start point a parent needs.

If you need help - start here.  Email your questions to us at IPWSO  We will do our utmost to help you find answers.

1 comment:

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