I have written at length about how Child and Adolescent Mental Health Services (CAMHS) have been failing our Autistic young people. Despite the Autistic communities wide spread knowledge that this service is not fit for purpose, our children still get referred to them. So what, if anything, should be happening when a referral happens? What do you, as the parent carer, need to know from them? As a qualified independent mental health advocate working specifically with Autistic people, here is what I would be doing and asking.
Make CAMHS professionals create a paper trail
What CAMHS say and what they do is often at odds with each other. Much of the communication may take place over the phone or face-to-face. While this is great for getting quick answers (sometimes), it’s easy for professionals to back track or deny things that have been said. For this reason, I would strongly recommend asking for all communications to be put into writing. It’s okay to use the phone, or be there in person, but ask them to summarise and confirm their words in an email or letter.
Not only does it make it easier to keep track of anything you need to do, it will make professionals think twice about committing to things they can’t follow through on. Another benefit to written communication is that should things go down hill and require investigation by third-parties, there is a clear chronology and record of interactions. Don’t forget, if you feel you have been misrepresented, tell them in writing so that there is a clear record of your disagreement.
What questions should I be asking CAMHS professionals?
“What is your role within the service?”
This question is important because it sets expectations for you about what this person can and can not do with regards to your child. Miscommunications happen often because the professional in front of you is not the one you need to speak to. Do not be afraid to explore what the limits of their professional remit is so that you can establish if this is the right person to work with your child.
“How long will it take to assess my child?”
When children are referred there is often a lot of anxiety surrounding wait lists and assessments. It is okay to ask for timelines, even if they can’t be given. Don’t be afraid to press the urgency of your child’s support needs.
“What are you looking for in this assessment?”
Many professionals will prefer you to go into an assessment with no background information. However, you have a right to know why your child is being assessed. This is a helpful question as it can help you prepare and collate information ahead of assessments, Many parents are neurodivergent themselves and need time to script their interactions and prepare information in a way that others will understand.
“What support and treatment can your service offer?”
It is 100% okay to ask what supports and treatments a service offers. If all they offer is group therapy which your child won’t engage with, you need to know that before wasting time on an assessment. Part of advocating for our child is having the knowledge required to know if a service is right for your child.
“What training and experience on autism and neurodiversity do your staff have?”
This is a very important question. While there is now mandatory training into autism and learning disability for all NHS staff, this is somewhat superficial. What we need to see is staff who have been regularly engaging with Autistic service users and receiving further training beyond the mandatory training that exists.
“How will this service/therapy be adapted to my child’s needs?”
It is important to know how therapy or a service is adapted to individual children, particularly Autistic children. Asking this question allows you to get a feel for how important a successful outcome is to the professional working with your child. Do not be afraid to voice to the professional if you don’t think something will work for your child.
“Does your service implement service user involvement into it’s design?”
This is a question that is rarely thought of, but the answer can tell you a lot. If a service employs service user involvement in the design and implementation of treatment policy, then it is actively given those service users a voice in it’s management. It means staff have been made to have the uncomfortable conversations when something doesn’t work. It also tends to make services a lot better adapted to the needs of their service users.
You are entitled to advocacy support for your child and yourself
If either yourself or your child need additional support to understand your rights and have them met, you are entitled to instruct an advocate to support you and your family. You can bring advocates to appointments, have communications sent to them, and have them communicate on their behalf. Professionals are not allowed to bar you from involving an advocate in the CAMHS process. If staff are combative or refuse access to your advocate, consider making a formal complaint in the first instance or escalating your complaint to the health ombudsman. The health ombudsman provides an independent complaints service.
This is far from a conclusive list, but I hope that in some way this helps you feel more prepared for engaging with CAMHS. Please do share this with others to help even more people!
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