Neuronopathic Gaucher's News Contents
Gaucher's News Contents
Dr Ed Wraith, who is in charge of the Gaucher Centre at the Royal Manchester Children's Hospital, spoke on working with families and professionals.
It is very important to understand who does what and why because numerous professionals will be involved in your child's care such as your GP, local hospitals and the National Gaucher's Centres,' explained Dr Wraith.
Parents must remember that their GP is the most important person involved in their child's day-to-day and immediate healthcare. Even though they will not be an expert in Gauchers disease and this may be frustrating for parents, it is up to Dr Vellodi and myself to educate them on the disease.
Professionals working with families must remember that no two children or family are alike. What works for one may not necessarily work for another. Families and doctors should work in partnership and ensure that information and communication is a two way process to ensure that the child gets the best care possible.
Although there are a number of sources of information on Gaucher disease available, due to the rarity of the disease it may be difficult to find information and some of it may be questionable or out of date. The main sources are specialists, health professionals, families, the Gauchers Association, some libraries and the Internet.
Parents must recognise early on that having a child with a rare disease may often mean that they become frustrated with some health professionals who are unaware of the disease.
Therefore it is the parents who become the experts and often find themselves telling the same story over and over again.
Other sources of frustration may be that professionals ask parents for their opinions; and the endless red tape faced when getting things for your child.
In order for parents and medical professionals to get the most out of hospital visits or clinic, it is important for parents to consider the following: take a friend or partner with you, they may remember things you wanted to ask or recall what was said later on. Ask in advance whom it is you are going to see, that way you can prepare questions to ask.
Ask for a summary of all the points at the end of the visit to ensure that you understand what has been said and can follow up action points. Ask for a map so that you know how to get there and finally get a contact name in case you remember something later that you wanted to ask or are unsure about.'
Neuronopathic Gaucher's News
Gaucher's News Contents
Source: Gaucher's News February 2000. © Copyright Gauchers Association 2000