Diagnosis in Children
If you are suspicious that your child/young person may have a neurodisability (such as Autism or ADHD), there is unfortunately, not a simple diagnostic test that can give you a definitive answer and it often takes observation of behaviour by a specialist, over several months to arrive at any firm conclusions.
However, there are several key features that may be suggestive and the people best placed to gather this information is you the parent, the wider family and the child’s school/nursery, with whom the child spends virtually all of their time. It is NOT your GP who will likely only have a few minutes and even that will be in a very artificial context …but that doesn’t mean we can’t help point you in the right direction.
We would suggest that before attending any GP appointment seeking a specialist referral, consider what is the primary problem/biggest difficulty that has been identified for your child?
Specifically, consider how they functioning at home/nursey/school, with family and with their peers?…what is getting in the way?…how long have these difficulties been present?
Consider also, the main reason you are wanting a referral and the outcome you expect? e.g. is it a condition specific assessment with formal diagnosis or a general assessment of functional difficulties and how to get access to specialist support/ advice.
Consider the presence or absence of risk factors for developmental problems such as problems during pregnancy, prematurity or neonatal infections. Any family history of developmental disorders such as autism, ADHD and learning disabilities. Be prepared to discuss social history including who lives at home, as well any support currently from services such as MAST or social care.
Think about key developmental milestones including any concerning features such as loss of skills, and current level of function including communication, interaction, attention and behaviour.
What strategies have been used to help the child/young person and any support you have already accessed? Please bring any previous reports that have been done and information that would be relevant to this referral e.g. SEND support plans, Educational Psychology reports, My Plan, ECHP etc
Your GP will likely ask you and the child educator/ teacher to complete a questionnaire and it is only once this information is gathered, that can a referral be made.
Once a referral has been completed…
Sheffield Children’s NHS Foundation Trust, are committed to providing compassionate, high-quality care for children and young people in assessment and care for Autism and ADHD.
Over recent years, there has been a significant increase in the number of children referred to our Autism and ADHD assessment services, reflecting a national trend. Referrals have grown from approximately 1,500 in 2019/20 to 5,000 in the past 12 months. This rise demonstrates a greater awareness and understanding of neurodevelopmental needs, which is an encouraging step towards inclusion, but it has also brought challenges for Ryegate, our local service.
We understand that waiting for an assessment can be deeply frustrating and distressing for families. Current waiting times for Autism and ADHD assessments range from three to in excess of eight years, with those being referred in most recently waiting the longest. So please be patient.
Link to the child development and neurodisability service
Next Steps for you
Your Right to Choose
You also have the legal “Right to Choose” your healthcare provider. If you feel the waiting time is too long to be seen at Sheffield Children’s, you may opt to seek an alternative provider for assessment and treatment (where appropriate). Other providers may have shorter waiting lists but may not be able to offer the same level of service or continuity of care.
More information about your options is available here: Your Choices in the NHS and at the South Yorkshire ICB website. If you do choose an alternative provider after a referral has been made, please let Ryegate know so they can update their records and remove you from the list
Support whilst you wait…
Support/ Resources
Wider Support Options locally
Diagnosis in Adults
If you have ‘slipped through the net’ and find yourself considering whether or not you have a diagnosis of ASD/ ADHD as an adult, you can be referred to SAANS. Unfortunately, the waiting list for adults locally is even longer than it is for children/ young people.
A good place to start would be to complete this Adult ADHD Screening Survey which will give you come idea of the likelihood of the diagnosis. Then it is for you to consider what outcome you are hoping for i.e. validation as to why you act/ think differently from others, or is it treatment options that you are keen to explore?
You also have a “Right to Choose” your assessment and/ or treatment service provider. We will be happy to write a referral and send it to a nominated provider at your request (after which point, any queries about the appointment, you will need to contact the provider directly). RTC providers are usually private provider companies that hold an NHS contract with one or more NHS commissioners. When choosing a RTC provider it is important to consider the following points:
Choice
Your GP cannot choose for you. You need to research the options and make the choice yourself, then contact your GP to inform them of your chosen provider and they will advise you on how to proceed NHS RTC providers for ADHD/ASD
Referral
The number of RTC providers is large and changes all the time. Each provider may have its own referral process but it is not practical for your GP to complete a different referral process for every patient who chooses a different provider. Most providers need a core set of information, so your GP is likely to ask you to complete the Adult ADHD Screening Survey as part of a standardised referral and if the provider needs additional information, they can request it from the practice or ask you directly.
Diagnosis and follow-up
Be aware, however, that most RTC providers exclusively perform remote and/or online assessments, and the local NHS ADHD services may or may not have sufficient confidence in the robustness of these diagnostic processes to accept their diagnoses. They may therefore, not take over your care unless they have completed their own assessment and diagnostic process as well. Therefore, your diagnosis may not be universally accepted, and you may find that you cannot seek treatment or follow-up with local services following a RTC diagnosis.
Prescriptions
If you are diagnosed with ADHD the RTC provider may suggest medications for you. The medications used for ADHD are however, restricted, such that GPs cannot routinely prescribe them and the specialist service is responsible for the safe prescribing them. This may have cost implications if you remain in the private sector. The RTC service can request that your GP prescribes them under an agreement called a ‘shared care agreement’ but it is unlikely that your GP will be able to enter into such an agreement for reasons of patient safety and resources. It is not safe for GPs to try to keep up with so many providers, each with their own contact details and processes when prescribing such safety critical medications.
Due to the nature of RTC providers, if the business stops trading for any reason, or if they have their NHS contract removed, then their care and any prescriptions would more than likely cease, which is another reason your GP may not feel it is safe or good practice to enter into an agreement to prescribe for them.
When you are choosing your RTC provider you may find it useful to use this information to support your decision making, and also to share with your chosen provider so that they are aware that their duty in prescribing, in particular, it is highly unlikely to be taken over by your GP for ongoing care.
