There are some children who have learning difficulties or health problems, and no-one can give a diagnosis to explain the cause of these problems.
Even though most people do not realise it, having an ‘undiagnosed condition in children’ is actually quite common. It is thought that about half (50%) of children with learning difficulties have no definite diagnosis. Children without a diagnosis are still entitled to receive healthcare, education, benefits and services that are appropriate to their particular needs, but their parents often find that it is more difficult to access information, services and support.
“If you have a diagnosis you’re on some sort of track. Without a diagnosis it feels like you’re lost in a swamp.”
“If you are able to go in and say ‘He’s got so and so disease’ then they go ’Okay that is fine.’ But you can’t. You have to go back from birth when you were first told, and explain the whole thing.”
Genetic Alliance UK (www.geneticalliance.org.uk) has been working with parents of children who have no diagnosis to try to understand their experiences and gather advice for other parents in the same situation. Here are just a few tips that parents have given:
“'Without a diagnosis it feels like you’re lost in a swamp'”
• Try to enjoy your child. It is easy to focus on all their problems and forget to enjoy watching them grow up.
• Once you accept your child for who they are, your life becomes easier.
• Try not to worry too much about the future. Try to focus on dealing with each day at a time.
• Raising a child with a disability can be hard work, both physically and emotionally. Don’t be afraid to ask for help
and take help when it is offered.
• Keep a paper trail. Keep copies of all letters, appointments, test results etc in a folder.
• Create a ‘passport’ for your child. This can be a series of flashcards that explain things such as what your child can
and cannot do, what they like/dislike, any health problems they have etc. These can be taken to appointments and
are a quick way of passing on information about your child.
• Take someone else with you to your appointments as a ‘second pair of ears’. This person can take notes of the
discussion you have with the specialist. These can be a great help later on when you try to remember what was said.
• Don’t be afraid to chase things up and be persistent.
• Not having a ‘name’ for your child’s condition can make it difficult when filling out forms. You find you end up writing
‘undiagnosed condition’. Having a letter from your consultant that explains what this means can be helpful.
• Try to make siblings feel involved in caring for their disabled brother or sister.
“Even if we had a diagnosis, he’s still Charlie to me. It’s not going to change him in the slightest.”
“We have got no diagnosis, she is just Lisa, she is just unique. But to be honest with you, we get so much enjoyment out of her it totally outweighs any problems.”
Genetic Alliance UK is currently working on a booklet for parents of children with undiagnosed conditions. This will be available early in 2011 and you will be able to download a copy from their website www.geneticalliance.org.uk . Or you can contact Genetic Alliance UK on 020 77043141 to request a copy.
Genetic Alliance UK is the national charity of over 130 patient organisations supporting all those affected by genetic conditions. If you would like to make a donation to support their work with families with children with no diagnosis go to http://geneticalliance.org.uk/donate.htm
Genetic Alliance UK is also one of the charities that you can support with your KidStart savings www.kidstart.co.uk. Why not consider allocating a percentage of what you save to support their work?