Once you realise yourself or your child/young person may have a special need, learning difficulty or health problem, considering getting a diagnosis is something you would need to think about.
If you or your child have an undiagnosed condition you may worry that you might not be able to get any help or support - but this is not the case. Every person is different and is entitled to get support for their individual needs, regardless of whether they have a diagnosis.
How important is getting a diagnosis?
While some people say they would like a diagnosis, over time some find that getting a 'name' is not as important as it was at first. For these people, the most important thing is ensuring that their or their child's day-to-day needs are met.
Others, however, want a diagnosis to help make sure they or their child has the best possible support and treatment. A lot of people worry that they or their child will not be able to get the support they need without a firm diagnosis.
You or your child are entitled to support whether a diagnosis or not is given. The support received should be based on the additional needs and not the name of a condition.
It can take some families a long time to get a diagnosis. For some people, this can be frustrating and very upsetting, so it can be helpful to talk to professionals to better understand why an early diagnosis is not always possible. About 50 per cent of children with a learning disability have no definitive diagnosis and there are also some children with a disability that no one is able to explain the cause of.
There are several reasons that may delay a quick diagnosis:
There are more than 6,000 known rare conditions, and some symptoms of rare conditions are unusual - if the specialist examining you or your child isn't familiar with the condition causing their symptoms, then you may be referred to another specialist.
Some conditions have similar general symptoms; for example, muscle weakness, tiredness, pain, vision problems, and dizziness or coughing. Doctors are trained to look at common causes of symptoms before they consider rare conditions.
There are significant variations in the way that a condition can affect different people. They may not have all the symptoms usually associated with the condition, or the symptoms they do have may not fit those usually associated with the condition.
Certain things that indicate a condition may not appear until your child is older - this may result in a late diagnosis or even a change in diagnosis.
Because of improvements in science and medicine, there may be a belief that doctors can always find out why something has happened to you or your child. Sometimes this isn't the case and this can be frustrating and disappointing.
Referral to specialists
This can take time. It can be difficult to get an appointment with some specialists. Sometimes you may have to wait three to six months for an appointment. You may need to visit different specialists who can provide information and reports that need to be combined with others to confirm a diagnosis.
Identifying the condition, special need or disability
This can be difficult - you may see several specialists before you finally find one who knows something about you or your child's symptoms and condition.
You may suspect a particular type of condition, so you could ask for a referral to a specialist service (for example for Autism, ADHD or Dyslexia).
If you want to do this, it is helpful to take a list of all the ways your or your child is affected along to the appointment to explain why the referral is needed. Support groups for the condition you have in mind may be able to help you find information and the right specialists to make a diagnosis.
If you think you or your child may benefit from a particular assessment or testing, then discuss this with your GP or medical professional. If you find reliable evidence to support this bring a copy to your appointment to show the doctor.
If the cause might be genetic
If it is suspected that the cause of you or your child's difficulties is genetic, then your GP (general practitioner) may refer to a genetics service, which is based at a regional genetics centre. Often people with a genetic condition will have distinctive facial features (also called dysmorphic features). Ask your GP or paediatrician for a referral to a genetics centre if you think your child has a genetic problem, or if you think your child has dysmorphic features.
Who can help with getting me or my child a diagnosis?
You can discuss your concerns with your GP or your child's development with your health visitor.
Your GP may refer your child to a paediatrician, someone who specialises in conditions affecting children and young people. They in turn may refer your child to a consultant who specialises in a particular area of medicine. If your child has lots of symptoms, they might be referred to different specialists to see if any of them can make a diagnosis.
Other health professionals may be involved in assessing certain activities. For example, speech and language therapists (SALTs), physiotherapists and occupational therapists (OTs).
What to do if you are not happy
If you feel strongly that all ways of getting a diagnosis have not yet been explored or you are not happy with the decisions made, you may be able to get a second opinion.
You can go back to your GP and ask them to refer you to a different specialist. Try to avoid being confrontational, but be firm. Explain the reason you are asking for the referral, giving examples if possible.
If you would like a second opinion after receiving advice from your GP, you can ask them to refer you to another GP at the same, or a different practice.
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