ESPCF, CAMHS and ND (neurodevelopmental) Service – working together group
Find out about the topics and issues that have arisen at our monthly CAMHS parent carer group.
About the group
This group meets online every month and was created following feedback from parent carers about the need for keeping families informed and connected while waiting for CAMHS appointments and assessments. It’s an opportunity for parent carers to share experiences and ideas with the participation team at CAMHS, as well as ask questions about aspects of the service and hear news and updates.
Any parent carer in East Sussex is welcome to attend the group. If you’d like to come along, please send an email to ku.gro.fcpse@ofni and we will ask the CAMHS team to add your details to the mailing list for meeting information.
The themes discussed vary considerably but are led by the parent carers who attend. Quite often there are helpful peer to peer suggestions and signposting and there are always plenty of questions for the CAMHS team which often need an answer to be sought outside of the meeting.
What we talk about
In this article are the main discussions, issues raised, peer support suggestions and the questions and answers for the groups held in January, February, March, May, and June 2026 (there was no session in April due to the Easter holiday). The topics discussed at each meeting are listed in the table immediately below, with fuller notes and details further down this article, in order of the most recent meeting first. Please see the table at the end of the article for the questions awaiting responses, along with a glossary of terms.
| Meeting date | Topics discussed |
| 1st June 2026 | Parent carers and schools working together Reasonable adjustments Penalty fines for non-attendance at school Emotional support for parent carers |
| 11th May 2026 | Making a Subject Access Request (SAR) ARFID (Avoidance/Restrictive Food Intake Disorder) support Private assessments Adoption CAMHS information sharing |
| 9th March 2026 | Keeping in touch letters (now called communication while waiting) Communication about waiting lists Info pack/better comms for parent carers Transition to adult services |
| 2nd February 2026 | ARFID (Avoidant/Restrictive Food Intake Disorder) ADHD assessments CAMHS information for parent carers |
| 12th January 2026 | Update on Me and My Mind (Mental Health Support Teams) Joint ASC/ADHD assessments Adopted children and foster carers |
This article will be updated with the July themes once ready – so keep an eye out for that. Details for the meetings in November and December 2025 are already available in our news section.
1st June 2026
Meeting attended by:
Parent carers
Rivkah Cummerson: CAMHS East Sussex | Youth Engagement and Participation Manager
Viki Ashby: General manager East Sussex CAMHS
ESPCF staff
Summary
A particular focus in this session was on how parent carers and schools can work together to secure the best support possible for their child(ren). Topics explored included:
- Understanding emotionally based school avoidance (EBSA)
- How to challenge lack of reasonable adjustments.
- What parent carers rights are re penalty notices for non-attendance.
- Emotional support for parent carers for the worry this creates and the exhausting workload of trying to keep on top of it all.
QUESTION:
Is there anything parent carers can do to challenge school issuing penalty notices if their child is struggling to attend due to emotionally based school avoidance?
ANSWER:
The EBSA toolkit was shared as it focusses on the requirement for school to put measures in place before this option is considered. The Department for Education working together to improve school attendance guidance allows headteachers to use code I (Illness/Medical, which includes mental health) for EBSA. Medical evidence is not strictly mandatory, but GP or CAMHS letters help formalise the absence.
Peer to peer tips offered in the meeting:
- Ask to see the school policy on EBSA and ask them to follow EBSA guidance (See EBSA toolkit in resources section of notes).
- Involve the school SENCO by asking them to be at meetings so you have support in representing the needs of your child.
- ESPCF and Amaze hold support groups/coffee mornings in schools. It is worth asking them if there is such a support group offered in the school or college your child attends.
- Keep a paper trail of interactions you have with the school. It’s an additional burden but can prove very important should you need to challenge later.
- Consider using an advocate to support you in school meetings.
- Supporting your child is hugely challenging. You are doing enough, you are enough. Please be kind to yourself as you would to someone else.
Resources shared by parent carers within the meeting
Guidance on ‘Universally Available Provision’: which details what should be available to support young people across the education provision.
This is a parent carers led initiative shared by ESPCF. The link will take you straight to the resources page. There is a great deal of information on this website, but if you scroll down to the (third) section: Advice for Families where there is a downloadable pdf which is a great place to start. Not Fine in School also has a Facebook group which is very supportive.
IPSEA – Independent Provider of Special Education Advice
This is a very informative website which has helpful resources such as template letters, including for getting temporary education put in place as well as guidance should you ever decide to apply for an EHCP (education, health and care plan) as well as everything you need to know about SEND law.
ESPCF closed Facebook group for parent carers
ImPACT Facebook group for parent carers
Resource for children experiencing difficulties with food and eating. Dr Pooky Knightsmith website – parent carer and professional with lots of resources for parents of neurodivergent children. Dr Pooky Knightsmith on YouTube.
11th May 2026
Meeting attended by:
Parent carers
Rivkah Cummerson: CAMHS East Sussex | Youth Engagement and Participation Manager
Viki Ashby: General manager East Sussex CAMHS
ESPCF staff
Summary
This was mainly a question-and-answer session focusing on how to make a Subject Access Request (SAR), support for ARFID, private assessments, adoption, and CAMHS information sharing.
QUESTION:
How do I get hold of important reports and paperwork concerning my child so that I can share with relevant organisations?
ANSWER:
This is what is called a Subject Access Request and this needs to be made to the Medical Records department in SPFT. You can send them an email: ten.shn@tnemeganamsdrocer.tfps or you can fill in a form online. If you have followed this process but not heard back, then please do contact them again on the address given as they have certain standards to meet regarding how quickly they respond.
QUESTION:
When will local support be available for young people with ARFID presentations?
ANSWER:
The ND service and CAMHS are aware that the lack of a local commissioned service for ARFID presentations is causing distress. Contact has been made with the Integrated Care Board (ICB) and issues continue to be raised to seek appropriate answers and solutions. The ICB are due to issue a statement outlining how ARFID support should be working across the entire system, and they have been written to and asked for this statement so it can be shared with the group. Two ICBs (Sussex and Surrey) recently merged. Surrey has a local ARFID offer, and we are waiting to hear if Sussex will develop a similar offer.
Currently if a young person who is experiencing ARFID meets the CAMHS threshold for mental health challenges they will be accepted into the service. CAMHS are not commissioned to deliver ARFID treatment but will always treat the young person holistically. If they do not meet the CAMHS threshold, then the ARFID presentation should be referred to paediatric services.
QUESTION:
We had to pay for my child to have a private ADHD assessment as we felt waiting was too detrimental to our child’s health as they have been out of education now for 2 years and are losing a huge part of their lives. I would like to understand why having a diagnosis does not allow us to have a quick consultation re medication needs at the ND Service. We cannot get our GP to enter into a shared care agreement with the Right to Choose provider.
ANSWER:
The understandable frustration with long waits to be seen in the ND Service were acknowledged. Also acknowledged was the huge impact waiting has on young people and their families.
It was explained that prescribing medication to children is complex and needs to be approached within a responsible and thoughtful framework. Whilst the assessment of Right to Choose provider colleagues is not in question, it is the duty of a prescribing clinician to be satisfied that they personally confirm its appropriateness as they take the responsibility for the prescription. This means even with a Right to Choose diagnosis a referral to the service for medication will wait in the queue in same way as a child without a diagnosis.
As Right to Choose and the ND Service are both NHS services, families may only be on one waiting list at a time. When a family uses the Right to Choose route and is currently on the ND Service wait list, the ND Service will write to them signalling the intention to discharge them from the service. At that point a family has 14 days within which to reply and request a transfer of care from the Right to Choose provider to the ND Service for medication. If a reply is received within the 14 days, the current position on the wait list will be honoured. If a child is discharged parent carers can always get back in touch with the ND Service to seek medication, but this will be regarded as a new referral and added to the bottom of the list.
The service leads for the ND Service took the decision not to let Right to Choose assessments speed up a referral as it was leading to inequality of access for families not taking this route.
QUESTION:
We do not seem to be receiving keeping in touch (KIT) letters anymore. What has happened to them?
ANSWER:
These letters are now called ‘communicating while waiting’ (CWW) letters. Since February 2026 any family referred into the service should have received one of these letters. Anyone on the waiting list who makes an enquiry to the service as to what is happening with their referral should also be sent one. These letters now include information about which referrals are currently being screened within the service. The service is experiencing challenges with staffing administrative jobs which has prevented the service sending this information to everyone on the waiting list at once and may have resulted in some people not receiving the letter annually.
The group was asked if they preferred to receive regular CWW letters even if there was no new information, or to receive the letter annually. The group was unanimous on wanting regular communication and felt 6 monthly was the limit of the wait for such a letter and advocated for more frequent communication. It was stressed that being reassured you are still on the waiting list helps and that hearing nothing adds to the overwhelm already being experienced.
There is an intention to automate the system for sending a message more frequently (probably every 6 months) to confirm that someone is still on the waiting list.
QUESTION:
There is concern amongst the adoption community about a lack of specialist CAMHS provision for adopted children. Their previous LAC status gave them priority in school choices which acknowledged the added needs/vulnerability of this group of children, but once adopted, these children are not given the same prioritised NHS support that current LAC children are.
ANSWER:
Access to CAMHS services is prioritised based on clinical need (mental health presentation and risk) and not on other factors such as a child being looked after or adopted.
There is an East Sussex Children in Care mental health service which receives funding from ESCC to offer mental health support specifically to young people who are looked after and who do not meet the CAMHS threshold. There was an adoption CAMHS service but the funding for this was withdrawn. The remaining staff who worked in that team now work in CAMHS and do offer support to colleagues when they have queries regarding appropriate support for someone who is adopted.
QUESTION a:
The set up of the CAMHS assessment heightened anxiety for our 9-year-old adopted child and we couldn’t get them in the door. A white room, no toys and 3 chairs set up like an interview!
QUESTION b:
When an adopted child has autism, ADHD and GDD expecting them to attend for an hour while questions are asked to parents is not realistic and could be discussed with the parents before the appointment with the child.
The answer below refers to both above questions.
ANSWER:
A new digital system is coming to CAMHS so that when a referral comes through SPOA (Single Point of Advice), a link will be sent for an online portal in which families will be asked more questions about the accessibility needs their child may have so that the room can be set up accordingly and issues such as parent only preparation sessions can be raised.
Work is also taking place around staff training to support neuro-affirmative practise. In addition, all staff undertake the Oliver McGowan training on autism and learning disability a minimum of every three years.
The Oliver McGowan Mandatory Training on Learning Disability and Autism
QUESTION:
The Right to Choose pathway is not available until 5 years old. We’ve been on the ASD pathway since our child was 2 years old.
ANSWER:
The ND Service only provide ASC assessments for children aged 11 years + so children younger than this should be referred to the Child Development Centre – community paediatric service.
QUESTION:
Many of our children experience mental health challenges but we keep being told that our children are neurodivergent as if that explains the mental health need away. We need a service that takes a holistic perspective of a young person who is autistic and for example, self-harming. Is this being looked at?
ANSWER:
The ND Service are commissioned to provide ADHD assessments + medication when appropriate and ASC assessments only, to children aged 11yrs+.
CAMHS are commissioned to offer mental health support to young people experiencing moderate to severe mental health challenges. If a young person meets this threshold, then their ASC or ADHD diagnoses would not exclude them from the service.
The ND Service regularly refers young people into CAMHS where a mental health need is identified.
The CAMHS service is developing more appropriate, neuro-affirmative support offers for young people accessing their service who are neurodivergent.
9th March 2026
Meeting attended by:
Parent carers
Rivkah Cummerson: CAMHS East Sussex | Youth Engagement and Participation Manager
ESPCF staff
Summary
This was mostly a question-and-answer session which included topics around the CAMHS waiting list and communication/information for parent carers.
QUESTION:
What is happening with the keeping in touch letter process?
ANSWER:
The ‘keeping in touch’ letters that were sent out by the ND service are now called ‘communication while waiting’ letters. This letter will be sent out annually or when a parent/carer approaches the service for an update. They will receive:
- ‘While you are waiting’ leaflet. This covers what to expect from the service.
- ‘When to take action’ leaflet. This covers what to do if things change and you are concerned for your child whilst they are waiting.
- ‘Autism and ADHD information pack’. This covers a huge range of useful information for young people and parents and carers.
QUESTION:
What plans are in place to let parent carers know how long the wait is for both CAMHS and the ND Service? “It is real people who are waiting, not numbers on a piece of paper. The risks are high for the child and for the family supporting them” (parent carer).
ANSWER:
The ND Service are now issuing new an annual communication as explained above. The ‘while you are waiting’ leaflet will let parent carers know which referrals the team are currently processing e.g. March 2021.
There is currently no plan to publish this information by SPFT for the CAMHS service. We understand that the NHS will be required to publish waiting times and the Trust is looking into how this will work going forward. The participation team are receiving regular feedback from young people and families about the need for waiting list information and the impact waiting has. They are escalating the concern that services are not yet publishing this data.
QUESTION:
Would the ND Service and/or CAMHS consider creating a parent carer information pack? Contents that were discussed such as:
Parent support, e.g. Holding Space, Amaze
Young person support, e.g. iRock
DLA, Pip advice
How to safeguard SEND children in the event of parental death
ANSWER:
CAMHS are working on improving communication and access in the service and have booked to discuss this proposal and the one shared a few months back regarding one-hour sessions that provide some formal teaching followed by informal discussion.
The ND service have produced an information pack that covers a lot of these points, although not all of them. In addition, parent carer ideas have been shared with the neurodevelopmental pathway lead to be included on the website they are developing.
QUESTION:
What plans are in place to let parent carers know how long the wait is for both CAMHS services?
ANSWER:
There is currently no plan to publish this information by SPFT for the CAMHS service. We understand that the NHS will be required to publish waiting times and the Trust is looking into how this will work going forward.
QUESTION:
Could the MHSTs (Mental Health Support Teams) play a role in sharing information when a family applies for an EHCP?
ANSWER:
The MHST service manager replied: guidance and information regarding EHCPs should come from the assessment and planning team who manage the EHCP process, so the MHST would not advise parents and carers on this.
QUESTION:
If my daughter is turning 17 years old should our CAMHS clinician have already discussed transition with us?
ANSWER:
Transitions within the ND service are usually discussed from age 17.5 years onwards if receiving medication for ADHD. If your child is still on the waiting list for ADHD/ASC assessment when they turn 17.5 years, then you will be contacted to let you know that transfer of care will be made to adult ND services.
If your child is actively receiving treatment from CAMHS, then your clinician should discuss next steps before they turn 18 years old. If they have not received an active treatment, we try to contact all young people between the age of 17.5 and 18 years old to plan the next steps.
Services and support referred to in the session:
Holding Space – provides parent carer peer support from people with lived experience if your child is facing challenges. Groups, coffee mornings, one-to-one work.
iROCK – in person and online support for young people aged 14 to 25 years without the need to book. Support on mental health, benefits, housing, health etc.
Amaze – Amaze run parent support groups and activity groups for young people with SEND.
Sussex Recovery College – condition courses are designed for adults, but the creativity, wellbeing, and personal development courses could be very helpful. Courses are offered online or in person. People accessing services and their parent carers, supporters can also attend.
Brighton & Hove Recovery College – like Sussex Recovery College, they offer a broad range of courses from condition specific to wellbeing.
2nd February 2026
Meeting attended by:
Parent carers
Rivkah Cummerson: CAMHS East Sussex | Youth Engagement and Participation Manager
ESPCF staff
Summary
Eating disorders and specifically ARFID (Avoidant/Restrictive Food Intake Disorder), ADHD assessments, and CAMHS information for parent carers were amongst the topics, issues, and questions raised at this meeting.
Notes
Issues and concerns raised:
Parent carers are feeling that they and their children are falling between the CAMHS mental health service and the neurodevelopmental pathway due to lack of ARFID services.
There seems to be a muddle about what CAMHS will and won’t work with regarding eating difficulties.
Without a diagnosis it can be hard to know which advice and support spaces to use even if you are given resources.
It can be challenging for parent carers to secure support when behaviours only happen in one setting e.g. home and not school. Parent carers would like schools to work more closely with them and offer support if parents report challenging behaviour in the home.
Parent carers would like services to be more proactive in letting them know if issues have been observed in their setting e.g. schools.
It is frustrating when health professionals speak to parent carers as if they are children, undervaluing their lived and live expertise of people who are living and breathing this situation.
Do services understand the global impact on the family of untreated mental health problems and unsupported neurodivergent presentations? One parent carer talked of panic attacks.
Parent carers need reassurance that they are not harming their children by waiting, or that their attempts to offer support are in anyway harming their children. The burden of responsibility is overwhelming.
Families can find they do not want to go out for fear of what other people will say to them about their child.
It is a barrier when school will not offer support without a diagnosis. Parent carers feel particularly frustrated with the mixed messages they receive around masking.
Questions raised and answers provided:
QUESTION:
Do CAMHS accept private reports?
ANSWER:
Process for ADHD assessment: CAMHS do work with ADHD assessments provided by private providers (Right to Choose or other). These do not change waiting times, however.
A child known to CAMHS will remain in their place on the waiting list and the assessment reviewed when they reach the top. At that time, CAMHS may request some up to date information, but the assessment is accepted.
A child unknown to CAMHS will be added to the bottom of the waiting list and the information reviewed when they reach the top. At that time, CAMHS may request some up to date information, but the assessment is accepted.
Process for ASC assessment: CAMHS only provide diagnostic services for ASC in young people aged 11+ (secondary school). A child with a private diagnosis therefore will no longer require a CAMHS assessment and if waiting, will be discharged.
Where a child with/or awaiting diagnosis of ADHD and/or ASC is found to need support with a mental health condition, CAMHS will offer an assessment where appropriate or may recommend an alternative more appropriate service. If appropriate following the assessment, the young person’s name will be added to the relevant waiting list for treatment.
QUESTION:
Can CAMHS provide information for parent carers on what co-morbidity is and how to think about this with health professionals?
ANSWER:
Yes, CAMHS are currently working on a plan to make a video about ND and mental health co-morbidity.
QUESTION:
Paediatrician (Child Development Centre) said they would only accept a referral from school. However, the GP told us to do the referral ourselves.
ANSWER:
Child development centres will only accept referrals from health or education professionals. A self-referral would not be accepted. We would be happy to contact the GP concerned to update their information if you supply the name of the GP practice.
QUESTION:
What kind of relationship do CAMHS have with BEAT (Eating Disorders support)?
ANSWER:
They are a national organisation who are separate to CAMHS. The CAMHS manager will proactively follow up if members feel misinformation is being shared in that space.
QUESTION:
Can we have information about how long we can expect to wait for? Having this information allows us to make an informed decision as to whether we can afford to wait that long? This becomes especially important for an older teen e.g. age 15.
ANSWER:
The participation team are hearing this same feedback from young people and families across all our initiatives. We are escalating the issue.
ND Service: New ‘communicating while waiting’ letters will be sent to new referrals and those enquiring as to where they are in the wait list. This letter communicates which referrals the ND Service are currently processing.
QUESTION:
Is there additional help for adoptive/kinship families?
ANSWER:
When CAMHS had an Adopted CAMHS service (AdCAMHS) the threshold was lower and this support was available as a result. Following the departure of core staff, CAMHS lost the funding for that service in April 2024.
QUESTION:
What involvement do MHSTs have with CLASS (Communication, Learning, and Autism Support Service)?
ANSWER:
CAMHS has a partnership with the ‘coping with unexpected emotional situations’ project.
12th January 2026
Meeting attended by:
Parent carers
Rivkah Cummerson: CAMHS East Sussex | Youth Engagement and Participation Manager
Viki Ashby: General manager East Sussex CAMHS
Fiona Skinner: Me & My Mind – Clinical Practice Manager, West Mental Health Support teams, Education division
ESPCF staff
Summary
Fiona provided information on Me and My Mind (Mental Health Support Teams in schools) on who they support, how to refer, what they do and how.
Issues and concerns were raised and discussed on joint ASC/ADHD assessments; adopted children and foster carers.
Notes
Who CAMHS support and how to refer
Currently operate in 105 schools and there will be 100% coverage of the school population by 2030.
For young people aged 5-18 years.
We can accept referrals from CAMHS or school SENCOs.
Parent carers can ask a school to refer their child to the MHST by putting their wish in writing to the school SENCO or senior mental health lead.
We accept referrals for children who have previously had a service from us.
Once referred, we will gather information from the person making the referral, the young person, and the parent carer.
See below for how MHSTs communicate with CLASS – the Communication, Learning, and Autism Support Service.
MHSTs can work with young people who have fluctuating suicidal ideation, but only if CAMHS assess to say this is ok. Their work is not to focus on the self-harm or suicidal thoughts.
We do support young people with ASC using adapted CBT (cognitive behaviour therapy) approaches.
The MHSTs can work with children who are on a CAMHS waiting list.
What CAMHS does and how
We offer low intensity CBT, emotional regulation, and brief solution focused therapy.
1:1 and group work.
Employ 60 members of staff funded by the NHS.
Employ x 2 SEND specialists and all staff have had training on ASC.
MHSTs and CAMHS work together to understand schools with high referral rates and CAMHS take part in the recruitment of MHST staff.
We now have the role of team around the family coordinator. This coordinator can be assigned to a family – see below for more details.
MHST team and CLASS team sit within the same education division in the local authority.
CLASS offer has now changed to collaborating with schools and CLASS+ has closed.
We offer support to schools to enable them to deliver a whole school approach to mental health and wellbeing. This involves working with the senior leadership team, parent carers, and young people.
Academies sit outside the local authority which means we may not be able to influence a change in policy, but we will share our views and try to influence policy where we can.
New government investment in children’s mental health has been targeted at MHSTs. Community CAMHS has not seen an increase in investment this year.
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Issues and concerns raised
It would make more sense if ASC and ADHD assessments were done jointly. (Answer: A joint assessment pilot project was set up but the funding has ceased.)
Important that staff read notes before they meet a family to save them from having to repeat their story.
Problem raised that adopted children have their foster care data deleted which can mean data sharing is challenging. We wondered if this is in reference to adopted children having a new NHS number. This became law a while back. The medical history on the pre-adoption NHS number notes is summarised and shared (often in the background on systems for GPs etc). It may be worth speaking with your GP about this.
In terms of social care data/records, these are not deleted but it would be up to the social worker to decide what is shared with adoptive parents. When a child turns 18, they have a right to see their notes, preferably with support.
Questions raised and answers provided
QUESTION:
Is there additional help for adoptive/kinship families?
ANSWER:
When CAMHS had an adoption CAMHS service the threshold was lower and this support was available as a result. Following the departure of core staff, CAMHS lost the funding for that service in April 24.
QUESTION:
What involvement do MHSTs have with CLASS?
ANSWER:
CAMHS have a partnership with the ‘Coping with unexpected emotional situations’ project.
Questions raised in the group January to June 2026 awaiting a response
| Meeting date | Questions and responses |
| Jan 12th | Q: It would be so helpful for foster carers to be taught play therapy techniques. Is this something that can be offered?
A: The service lead has been asked for a response to this point. Q: Are the ICB definitely looking for an ARFID service and what is the timescale for resolving the gap in provision? A: The ICB have said they are due to publish a statement describing how ARFID should be supported across the network of children’s services (education, voluntary orgs, health care and social care).
|
| March 6th | Q: Do MHST’s offer a service in colleges as well as Primary and Secondary schools?
A: The service manager has been contacted for clarification.
|
Glossary
Child and Adolescent Mental Health services (CAMHS): refers to services for children and young people in East Sussex who are experiencing moderate to severe mental health challenges.
Sussex Partnership NHS Foundation Trust (SPFT): refers to the specialist mental health and Learning disability NHS health trust that CAMHS and Neuro developmental services sit under.
Integrated Care Board (ICB): This is the body that commissions mental health services across Sussex and Surrey. The model is of wrap around care utilising the broad range of services available to children and young people including schools, charities and other voluntary organisations, social care, health services including CAMHS rather than one service providing all support.
East Sussex County Council (ESCC)
Mental Health in schools team (MHST): This NHS England funded project, provides individual and group interventions for mild to moderate mental health challenges for children and young people in primary, secondary and college settings. Full provision across all post 16 provision is expected by term 2 of the academic year 2026-2027 and in all schools in East Sussex by 2030.
Neurodevelopmental Services, children and young people, SPFT (NDs): refers to the assessment (ADHD and ASC) and treatment (ADHD only) service for children and young people in East Sussex provided by SPFT.
Education, Health and Care Plan (EHCP): is a legally binding document in England designed to support children and young people aged 0-25 who have special educational needs (SEN) or disabilities.
Emotionally based school avoidance (EBSA): Term used to describe children or young people experience severe difficulty attending school due to heightened emotional distress or anxiety.