Many families have received a message from Clinical Partners or Paloma Health about changes to autism and ADHD assessments through the NHS Right to Choose pathway.
We know this will feel worrying and frustrating, especially if you have already been waiting a long time.
What is happening?
The local NHS team for Bristol, North Somerset and South Gloucestershire (called the ICB) has asked some Right to Choose providers, including Clinical Partners and Paloma Health, to pause booking new assessments for children and young people.
This is because more children need assessments than there is funding available right now. Until more funding is agreed, some providers are not able to carry out new assessments for children who have been referred to them.
What does this mean for families?
If your child is waiting with Clinical Partners
- Your child stays on the waiting list, unless you choose to leave it
- New assessments will not be booked during the pause, unless your child:
- already has an appointment
- is part-way through an assessment
- already has a diagnosis and is waiting for treatment
- is receiving ADHD medication or waiting to start it
At this stage, we do not yet have clear information about how families waiting with Paloma Health will be affected. We will share an update as soon as we know more.
At the moment, there is no confirmed date for when new assessments will start again with either Right to Choose provider.
Sirona Care & Health, the local autism and ADHD assessment service, has said that published waiting times only apply to children who are clinically prioritised. For children who are not prioritised, they are not able to give a waiting time. This means the wait through the local pathway could be very long.
By comparison, assessment waiting times through Right to Choose are likely to be shorter than the local pathway, even with the current pause.
Support while you wait
We know that getting a diagnosis matters to many families and young people, as it can help make sense of how a child learns, feels and behaves. If you have concerns about your child, it’s okay to ask for help and to take those concerns seriously, even if others do not.
Schools, colleges, early years settings and health services can and should:
- make reasonable adjustments
- put support in place based on your child’s needs
- use the graduated response to support your child in school (support that builds up step by step)
Ways to get support while you wait
Come along to our free peer support sessions and practitioner-led sessions. Here at Bristol Parent Carer we are all parent carers ourselves and understand the challenges you face. We offer free support and information sessions to help you understand what support your child may need and how to access it. You can find the details here.
Read your school’s SEND Information Report. This is on the school’s website and explains what support the school should provide. Let us know if you can’t find it and we will help.
Talk to your child’s class teacher or the SENCO. Ask what support is already in place for your child and what else is possible.
In Bristol, schools also use a document called Ordinarily Available Provision. This sets out the support schools should put in place for children without needing a diagnosis. You can read about it here.
Contact SEND and You, the local SEND Information, Advice and Support Service, their details are here. They can help parents/carers, children and young people to:
- understand SEND processes and rights
- build confidence when talking to schools and services
- communicate their needs, wishes and aims
You can refer your child for health support, such as information from a speech and language therapist or an occupational therapist. The average waiting time for these services is around 14 weeks. You can find information on speech and language here and occupational therapy here.
If you would like your child to spend time with other children with similar needs, or if you need some time for yourself, you can contact these short break providers for more information.
Waiting can be very hard. It’s normal to feel tired, worried, angry or upset about this. Sharing your experience with us can help turn individual experiences into change.
Our role as your local Parent Carer Forum
We know this situation is causing distress for many families. We are:
- Listening to what parent carers are telling us
- Trying to understand whether other providers may also be affected
- Raising concerns about the impact of long assessment times on children, young people and their families
- Feeding families’ experiences into our work with health and local authority partners to support earlier help for children and young people
There are a number of ways you can tell us about your views and experiences right now:
- By filling in our “Share Your Thoughts” form . This is a quick way to have your say any time you want to update us.
- By completing our current Health Services Survey . We want to know how well different services work for you — whether that’s getting a diagnosis in the first place; managing your child or young person’s condition; how well healthcare providers talk to you, each other and other local services; or any other successes or issues you’ve had with the people who support your family’s health.
We will update this post and our social media channels when we receive more information.
