ProblemShared
Early concerns
As a family, we had always wondered if our eldest son was neurodivergent. We picked up on a few early signs, but we were never certain, as we often thought his behaviour was typical of boys - especially one who had endured the challenges of COVID-19 lockdowns.
ADHD was first suggested as a possibility by my son’s teacher when he was six years old. He had trouble sitting still in the classroom, was easily distracted, found it difficult to follow instructions, and fidgeted often. He would also steal Blu-tack from classroom displays so that he had something to fiddle with!
We also noticed similar challenges at home, with my son finding it difficult to concentrate on daily tasks, showing frequent hyperactive behaviour, and having difficulty with regulating his emotions. However, we could not pursue a formal diagnosis until he turned seven years old.
Making this stage easier:
- During this time, I found it helpful to have an initial meeting with my son’s school. Together, we discussed his challenges at school and implemented some strategies to help him as we waited for a formal assessment. For instance, he was allowed to have fidget toys to play with in the classroom to channel his excess energy more productively.
- I also wrote down as much information as I could about my son’s strengths, challenges, and neurodiverse traits so that I had these ready for the assessment process.
The assessment process
When we first started the screening and assessment journey, I felt relieved that we may finally get access to the appropriate support for my son and have a greater understanding of his daily needs. When filling out the initial screening questionnaire, I had much greater clarity about how my son's brain worked. With each recognisable statement, things became clearer.
My child's school also filled out the screening questionnaire, and together, these results enabled us to pursue a formal assessment. During the next stage of my son's assessment, we provided greater detail about his childhood and developmental background, as well as the daily challenges and signs of ADHD that he faced. Receiving a diagnosis of ADHD has enabled us to put the support mechanisms into place that our son requires.
Tips for navigating this stage:
- Be open and honest with the medical professionals conducting the assessment, and don't be afraid to ask questions or voice any concerns you may have.
- Remember that you know your child best, and your input is invaluable in forming an accurate diagnosis and support plan.
- Find out as much as you can about ADHD and the assessment process. By staying informed, you will be better equipped to advocate for your child and make important decisions about their treatment.
- Be accurate and honest when filling out assessment questionnaires, and use past documentation, if required, to jog your memory about developmental milestones.
- Speak to other parents who have been through a similar experience for practical and emotional support.
- Work closely with your child’s school during the assessment process. Keep the school updated on the progress and any diagnosis or support plans that are put into place.
Talking to your child about their ADHD assessment
Explaining the ADHD assessment process to my son proved challenging, but we had always felt that it was important to keep him fully informed along the way. We had a conversation with him about what was happening and used age-appropriate and neuroaffirming language. We focused on the strengths and positives of his characteristics rather than highlighting any perceived weaknesses.
Based on my experience, here are some practical tips to consider when talking to your child about their ADHD assessment:
- Start by creating a safe and non-judgmental space for your child to talk to you about their thoughts and feelings.
- Use simple and plain language to explain ADHD and the assessment process to your child. The language you use must be appropriate for the age of your child.
- Always use neuroaffirming language when speaking to your child, focusing on their strengths and abilities instead of talking about “symptoms” and “deficits.”
- Encourage your child to ask any questions and express any concerns they may have about the ADHD assessment process, and practice active listening as they talk to you.
- Remind your child that you are there to support them every step of the way and that they can always come to you with any questions or concerns.
In my experience, speaking to my son openly about his ADHD has enabled him to become an advocate for both himself and his neurodivergent peers!
Final thoughts
Going through the ADHD assessment process has given me the opportunity to learn more about neurodivergence and the strengths and challenges that come with it. It has also helped me to better understand my son, and shown me how to adapt my parenting style to suit his unique needs. Remember that the assessment process is designed to help your child receive the support they need, so try to approach it with an open mind and a willingness to learn.
What happens after I receive an autism or ADHD diagnosis through Right to Choose?
Why does post-diagnostic care matter?
Receiving a diagnosis of attention deficit hyperactivity disorder (ADHD) or autism can be an incredibly validating and empowering experience, but it’s normal for clients and their families to also feel a bit overwhelmed. This is why we offer post-diagnostic care, to help you navigate life beyond assessment.
We are the only healthcare provider to provide this unique ongoing care. It includes psychoeducation workshops led by our clinical team, where you can learn more about your diagnosis, and where appropriate, the prescribing and titration of ADHD medication.
This is all in line with our standards of excellence. By providing expert guidance, educational resources, and emotional support, we ensure that our clients can build on their strengths and access tailored recommendations about how they can make positive changes to their lives.
Post-diagnostic support with ProblemShared
One of the primary goals of our ongoing support at ProblemShared is to equip individuals and their families with knowledge about how neurodevelopmental conditions such as ADHD and autism can affect their experience of the world around them.
Psychoeducation workshops
Our psychoeducation workshops are facilitated by our expert post-diagnostic intervention (PDI) practitioners. They are virtual group sessions and combine the offering of information with opportunities to learn from and support each other. While participation is encouraged, it's your choice as to how much or little you would like to contribute. Our practitioners provide a safe, structured environment to allow opportunities for discussion, reflection and collaboration.
Over 4 sessions, we aim to help you understand your diagnosis and how it affects you, as well as how you can overcome any challenges you might face and build on your strengths. You will have the opportunity to listen to the lived experiences of others with the same diagnosis and share your own thoughts and feelings about neurodiversity.
ADHD medication: prescribing and titration
If you receive an ADHD diagnosis, our specialist ADHD nurse practitioners can prescribe medication where appropriate, which can then be dispensed by your online pharmacy. Note that this will only be possible if your GP has pre-agreed to accept shared care at the point of your referral (there is a section on shared care later in this article). We will also work with you to alter the dosage of your medications based on how you respond to the medication – a process known as titration.
Shared care
Once your titration period is stable, we will move you into a shared care arrangement with your NHS GP. They will take on the role of prescribing and monitoring your medications, and provide ongoing support for any challenges you might face as a result of your ADHD.
After receiving a diagnosis, we offer guidance about working directly with your GP to ensure they continue to prescribe your medication. If you have been diagnosed by one of our clinicians, they can begin to prescribe medication, support you through frequent reviews, and liaise with your primary care team to ensure joined up expert care.
Need more information?
If you have any questions about Right to Choose, our post-diagnostic care, the referral or assessment processes in general, you can head to the support resources section of our homepage, or explore our FAQs.
How to get a Right to Choose referral from your GP
What is Right to Choose?
If you are referred by your GP for specialist treatment, such as an ADHD or autism assessment, you have the legal right to choose which provider oversees your care, as long as you are a registered NHS patient in England.
If you suspect that you or someone close to you might have autism or ADHD, it can be difficult knowing where to start with seeking a diagnosis. The good news is that through the NHS Right to Choose scheme, your GP can refer you to ProblemShared for an assessment and ongoing support.
The Right to Choose referral process, step by step
Firstly, you need to complete a self-report form. You will need to fill out the self-report form for your suspected neurodevelopmental condition. You should choose the self-report form that is relevant to your age:
Autism self-report forms
- AQ-10 for adults aged 16 and over
- AQ-10 for children aged 12-15
- AQ-10 for children aged 7-11
ADHD self-report forms
- ASRS for adults aged 16 and over
- SNAP-IV teacher and parent rating scale for children aged 7-15
If you are seeking an assessment for both autism and ADHD, you will need to complete two forms in total; one for autism, and one for ADHD.
All of our self-report forms can be found on our dedicated Right to Choose homepage.
Next, you need to speak to your GP. Get in touch with your GP and ask them to refer to you to the ProblemShared Right to Choose service. You will need to give your completed self-report form(s) to your GP before they can make the referral.
Then, wait for your GP to refer you. Your GP will now complete our digital referral process. You will receive an email when they have done so, asking you to provide some enrolment information.
Once you have provided the enrolment information, we will review your referral. If your referral is accepted, you will be notified by email and informed of the next steps in the assessment process.
Handling the conversation with your GP
The idea of advocating for yourself in medical spaces can be daunting. When the time comes to ask your GP to refer you for a neurodevelopmental assessment, it’s normal to feel a bit overwhelmed.
So that you can feel as prepared as possible, we’ve put together some tips on how to have the conversation with your GP:
- Use our pre-formatted GP letter. It explains everything your GP needs to know about the NHS Right to Choose scheme, and includes instructions for how they should refer you to our service. It’s been designed specifically to answer common questions GPs might have about the process, and makes the communication as simple as possible.
- Bring your completed self-report form. Make sure to give your completed self-report form to your GP when you ask to be referred, to avoid delays to the process. Feel free to bring other types of evidence which may demonstrate the challenges you have faced, such as a diary of symptoms.
- Take your time. Your GP is there to facilitate your healthcare needs and listen to you. It's highly likely that they will have had similar conversations with other patients before. Don’t be afraid to ask your GP for exactly what you want.
What to do if your GP refuses your request
If your GP questions or refuses your request, this could be for several reasons, including the following:
- They haven’t heard of the NHS Right to Choose scheme
- They have concerns about funding
In both cases your Right to Choose is not disqualified, and you can direct your GP to the NHS information on patient choice here.
There are, however, a few clinical reasons for refusal which are valid.
Genuine exclusions
You do not have the legal Right to Choose if:
- You are non-verbal and/or selectively mute
- You are not fluent in English
- You have a diagnosis of global development delay or a diagnosed intellectual disability (IQ below 70)
- You are currently receiving treatment for an active eating disorder, and/or in active family-based therapy or eating disorder therapy
- You are a person who is looked after, or under the guardianship of a local authority
- You are currently receiving treatment for drug or alcohol addiction
- You have experienced a current, or recently (within 3 months) resolved, psychotic episode
- You have a significant visual or hearing impairment
- You are undergoing safeguarding investigations
- You currently have high levels of risk in terms of your behaviour and mental health
- You require emergency treatment
- You have already received care or treatment for the neurodevelopmental condition for which you are seeking an assessment
- You are detained in a hospital under the Mental Health Act 1983, or on a Community Treatment order
- You are seeking a second opinion assessment, and have already been assessed for autism within the last year (this does not apply to assessment for ADHD)
- You do not have access to a laptop or computer (please note that an iPad which is at least 10” in size and can be propped up to be used handsfree can also be used to access our service, but handheld devices such as mobile phones cannot)
- You do not have access to an internet connection in a private place
- You or your child are not willing to conduct the assessment with your camera turned on for the duration of the assessment
- You are currently serving a prison sentence, or are on temporary release
- You serve in the armed forces
- You have had a head injury, brain surgery, or have a neurological condition that has left you with significant cognitive impairments
- You are unable to look after your self-care needs, or the needs of your dependants (e.g., washing, feeding, not taking prescribed medications)
Looking ahead
If you receive a diagnosis following your assessment with us, we offer a range of ongoing support options to our clients. We can prescribe medication where appropriate, and provide psychoeducation workshops where you can learn more about your diagnosis with our team of expert clinicians.
In the meantime, if you have any questions about Right to Choose, referral, or the assessment process in general, you can head to the support resources section of our homepage, or explore our FAQs.
