Your local NHS Integrated Care Board (ICB), Leicester, Leicestershire and Rutland ICB, is responsible for planning and funding NHS services in your area. Leicester, Leicestershire and Rutland ICB has asked Clinical Partners to make changes to the way autism and ADHD services are managed. These changes may affect how long people wait for assessment.
We are sharing this information so that patients on the Clinical Partners waiting list from Leicester, Leicestershire and Rutland ICB have the most up-to-date picture.
Why changes are being made
Demand for Autism and ADHD services across England is higher than the NHS financial resources available. Under new NHS guidance, ICBs can use contractual powers to manage demand and keep services within locally available budgets. This means ICBs may instruct providers that offer services under Right to Choose to prioritise these resources by 'pausing' certain assessments and in some cases treatment until further funding becomes available. Your ICB has asked us to pause new autism and ADHD assessments.
For parents and carers of children and young people
What this means for your child
Your child will stay on the waiting list, unless you ask for them to be removed.
While services for your ICB are paused, we will be unable to book your child’s appointment unless:
their assessment is already booked
they are part-way through their assessment journey
they are diagnosed and awaiting treatment
they are already receiving ADHD medication and require ongoing management and reviews.
When your ICB confirms further funding is available, services will resume, and we will begin booking assessments again in referral date order.
At this stage, we cannot give you a specific timeframe for your child’s assessment.
If your child is currently receiving ADHD medication, or waiting to start medication, this decision does not affect their care. We will continue to support them as planned.
Which services will continue?
Leicester, Leicestershire and Rutland ICB has asked us to continue to provide services for patients whose assessment date is already booked, those part-way through their assessment, those diagnosed and awaiting treatment, and those already receiving ADHD medication who require ongoing management and reviews.
Support in school
Schools can provide support and make adjustments without a formal diagnosis — please speak to your child’s school about what may be possible.
For adults
What this means for you
You will stay on the waiting list, unless you ask to be removed.
While services funded by your ICB are paused, we will be unable to book you for an appointment unless:
your assessment is already booked
you are part-way through your assessment
you are diagnosed and awaiting treatment
you are already receiving ADHD medication and require ongoing management and reviews.
When your ICB confirms further funding is available, services will resume, and we will begin booking assessments again in referral date order.
At this stage, we cannot give you a specific timeframe for your assessment.
If you have been invited to book your assessment by voicemail or letter, you can still call us to arrange your appointment.
If you are currently receiving ADHD medication, or waiting to start medication, this decision does not affect your care. We will continue to support you as planned.
Which services will continue?
Leicester, Leicestershire and Rutland ICB has asked us to continue to provide services for patients whose assessment date is already booked, those part-way through their assessment, those diagnosed and awaiting treatment, and those already receiving ADHD medication who require ongoing management and reviews.
Additional support
Workplaces and community services can often provide support and adjustments based on individual needs, even without a formal diagnosis. Please speak with your GP or employer about what may be available.
Your legal Right to Choose
You have a legal Right to Choose which provider carries out your NHS autism or ADHD assessment.
You may wish to contact other providers directly to confirm their current waiting times for your ICB. If you decide to move your referral, you will need to ask your GP to make a new referral and inform us so we can remove you from our waiting list. Please be aware that if you leave our list and later return to Clinical Partners, you will rejoin the waiting list from the beginning.
Support while you wait
We know waiting for an assessment can be difficult. We understand this may feel frustrating or worrying, and we are committed to making sure you are supported during this time.
You may also find these wider resources helpful:
Visit WaitingWell for advice and support for individuals on neurodiversity waiting lists across the UK
Find out more on about neurodevelopmental conditions on the NHS webpages for ADHD in adults and ADHD in children, and Autism
The National Autistic Society have an online community and a helpful advice and guidance page
ADHD UK is a charity run for people with ADHD by people with ADHD
The Health for Teens website has a broad range of useful health information, including about ADHD and autism. All articles and videos have been developed by trusted NHS school nurses and health and wellbeing experts
Explore local support groups or charities
Talk to your GP about self-management strategies, or if you are worried about your or your child’s wellbeing.
If anyone feels in crisis:
Call 111 for urgent NHS advice
Call 999 in an emergency
Support for adults:
Text ‘SHOUT’ to 85258 for free, confidential text support, availble 24/7
Call 116 123 to talk to Samaritans, available 24/7
Support for children and young people:
Childline – call 0800 1111 or use online chat
Shout – text YM to 85258, available 24/7
Papyrus HOPELINE247 – call 0800 068 4141 or text 07860 039 967
The Mix – call 0808 808 4994 or use webchat (under 25s)
Questions about these changes
These decisions have been made by NHS Leicester, Leicestershire and Rutland ICB to manage NHS resources. Unfortunately, our team is not able to provide further information about the changes.
If you have questions or concerns, please contact NHS Leicester, Leicestershire and Rutland ICB directly.
To talk through your options or any worries you may have, please also speak to your GP.
This update applies only to patients on the Clinical Partners waiting list whose NHS care is commissioned by Leicester, Leicestershire and Rutland ICB. If your care is arranged by a different ICB, please check your email to see if there is an update for your care.