Q Exchange
Neurodevelopmental Pathway Resource Portal
- Proposal
- 2024
Meet the team
Also:
- Laura Nisbet Lead_Nurse ADHD CAMHS
- Gill Waring Reminds Founder & CEO
- Faye Osmond Nonmedical_Prescriber Learning_Disability_Nurse
- Juno Holly Brook SEND Manager
- Jeremy Bishop Child_Psychotherapist
- Sam Nicolaou HIOW_ICB
- Claire Mason Manager Neurodiversity Team
- Emma Rowland Clinical Lead Child & Families First
- Jen Wright Rascal Ventures_Software_Development
- Elise Meyer Portsmouth_Parent_Voice
- Maria Murphy ADHD Lead_Nurse Hampshire CAMHS
What is the challenge your project is going to address and how does it connect to the theme of 'How can we improve across system boundaries?
Due to the demand for Children and Adolescent Mental Health services (CAMHS) for attention deficit hyperactivity disorder (ADHD) or Combined ADHD/ Autism assessment, there are now long waiting times both for assessment and treatment. Families often feel pushed from service to service when seeking support while waiting for assessment and believe a diagnosis is needed before strategies to support their child can be put in place. The role of wider community services can be unclear to families and expectations of services can be misinformed. Navigating services can be difficult, stressful and confusing. The proposal suggests the creation of an online platform that will connect services for Neurodevelopmental Conditions. This ‘one stop’ portal will support families to find the correct information they need at every step of the ND pathway or identify the service best place to advise at that time, minimising confusion, and the feeling of being unheard and unsupported.
What does your project aim to achieve?
A ‘one stop’ platform for ND across the city. Providing a three-tiered portal:
1- a universal offer explaining the symptoms of ND and services available to advise and support. This interactive level will explain how to get advice, help and more help depending on the symptoms and impact of these. There will be advice sessions linked with Reminds. An outline the pathway for ND assessment/treatment and how services map onto this.
2- once referral accepted to CAMHS. Assessment screening- online chat, and drop-in that is manned as part of ND duty. Further psychoeducation for symptom management building on provision at level 1. Assessment process explained and waiting times updates. Link back to level 1 for universal resources
3- Post-diagnosis support. Diagnosis information and resources building on those provided at level 2. Psychoeducation around treatment options. ADHD Clinic pathways explained and wait-times for medication treatment. Links to 1 and 2.
How will the project be delivered?
The project will be delivered in collaboration with Reminds and other community services (Educational Psychologists, SEND, Education and social care). Through Reminds we can access wider collaboration from young people and their families to help shape the portal from deciding its name, the information provided at each stage as well making sure the information services provide is accessible to all. Support from Individuals in the Trusts commercial and operational team will be essential in developing a safe and secure information sharing platform.
The service would be evaluated by qualitative and quantitative feedback measured through access to the portal and online feedback routes. Access to online talks and advice clinics would be monitored the number of contacts made will be counted and each contact provided with a satisfaction survey.
How is your project going to share learning?
1. The online portal will share the learning we receive from young people and their families on what information they need while waiting for assessment.
2. The learning would be presented and shared within the Q Community online communities and blog
3. Learning will be shared locally through the Trust’s Research Academy as well as within the local teams and services.
4. The project and outcome will also be shared with the local Integrated Care Board (ICB).
5. The project leads would also be keen to produce a research paper for publication to be shared wider.
6. If the project is successful, it has the potential to be rolled out and adapted for local services across Hampshire and the south coast as part of the wider Fusion of local mental health services into The New Hampshire and Isle of Wight Healthcare NHS Foundation trust.
How you can contribute
- 1. We would very much appreciate Q community colleagues and others to promote and share our project to receive as much feedback and interest as possible.
- 2. Has anyone in the Q Community set up an online portal or similar platform like this? Can you share any learning from your experience?
- 3. We would like to hear from young people and families who are waiting for ND assessment/treatment OR have been through this process – what information/support would be most useful to you at this time? Where do you look for advice and support? What have you found most helpful?
- 4. Any feedback or ideas are welcome!
Plan timeline
| 1 Jul 2024 | Kick off |
|---|---|
| 29 Jul 2024 | Complete Discovery Sprint, set-up advisory committee for co-production consultation |
| 2 Sep 2024 | Complete design sprint |
| 23 Sep 2024 | Prototype testing complete |
| 30 Sep 2024 | Technical specification complete |
| 4 Oct 2024 | Information Architecture complete |
| 25 Nov 2024 | Development Sprints complete |
| 1 Dec 2024 | Release window starts, beta followed by alpha release, post QA |
| 13 Dec 2024 | Complete Live testing and performance evaluation |
| 13 Dec 2024 | Quality Assurance (QA) testing complete |
| 31 Jan 2025 | Complete project evaluation, share with advisory committee |
Comments
Jayne Muldowney 18 Mar 2024
What a Brilliant idea!
An opportunity to embrace the reality of the technical age we live in!
This proposed platform will offer families at a time when they are struggling and vulnerable access to knowledge and information that is sourced from evidence based material and monitored by regulated bodies.
The process of looking at an assessment with possible acceptance into CAMHS and exploration of a diagnosis can be daunting for many and all come with their own anxieties .
Having access to knowledge can assist understanding of the full complexity of the neuro diverse mindset using science, psychology ,biology ,systemic and environmental factors and can help to break this down and support the way forward.
Having the use of the portal in their own homes means all these things can be explored at a time to suit the parent/carer and this can support their own commitments and lifestyle in not having to book time out of their day to attend meetings etc and both parents can be involved with the addition of grandparents and other supportive members involved in responsibility of the family network. This on its own can alleviate stress and support forward thinking.
Having trusted evidence based advice and clear recommended approaches regarding behaviour management available to parents/carers and with support to facilitate the thinking and actions needed to put the suggestions in place and follow through with a monitored approach can help take pressure off schools and aid communication between family, education and services involved and also alleviate time consuming requests at GP surgeries to gain answers of symptoms explained by the neuro typical behaviours.
As this portal will be available throughout the journey of the family they can monitor progress and success at all times working with the advice clinics and the support network in their communities .
Working with families on a daily basis I have confidence that if we empower parents/carers through knowledge, advice and support and help them to access the right material according to their own way of learning and processing information and activities they can become confident and resilient in managing family life with Nero Typical components and enjoy their full potential as part of the bigger system.
My hope is that the request for support to help fund this project will be granted and seen as an opportunity to support the NHS in a way that it will benefit many of the services that are working in a collaborative way in giving our families hope, energy and belief in a system that recognizes that they have much to offer our present and future vision at a time when they need to reach out and get the best map that we can offer them!
Our children are our Future!!
Laura 20 Mar 2024
thanks Jay for your insightful and lovely feedback, we really hope that this will be a valuable tool for families.
Laura 20 Mar 2024
Thanks Sarah
We hope to work alongside Portsmouth Parent Voice (PPV) when developing this :)
Sara Cochrane 18 Mar 2024
This will be an amazing asset and resource for families, carers and young people pre and post diagnosis, and a great bridge to close the gap for a lot of people in the cities. It will compliment the existing services of Family Assist and PPV.
Sharon Drewett 18 Mar 2024
This is a great idea and would be good to collaborate if we are successful, to share learning and ideas (see our bid We Wait Together). Also worth noting that Gloucestershire is just about to launch a website with local resources; happy to link you up if helpful.
Laura 20 Mar 2024
Hi Sharon
It would be great to collaborate, share ideas and learn together if we are successful. Also happy to make links and see how we can support and share learning in our areas even if we are not! Good luck with your bid, it looks like a worthwhile and well-supported proposal :)
michelle riceman 14 Mar 2024
This is a fantastic concept which will more closely align NHS offers for ADHD in Southampton and Portsmouth, where the user experience and process currently uses differing models. This will be a huge benefit for our geographical region.
We often find individuals and families make most use of ND Team support while waiting for assessment and the platform approach greatly helps to meet this need.
One piece of feedback would be that where possible, the full ND multi professional team could be involved to provide psychoeducation, advice offers and assessment (including speech & language and occupational therapies), This enables individuals to receive the most comprehensive ND package which can be tailored to their personal ADHD profile/symptoms.
Wishing you every success with this!
Laura 14 Mar 2024
Hi Michelle
Thank you for your feedback - I completely agree that a full suite of ND psychoeducation, advice and intervention across multidisciplinary services would be fantastic.... we would love to work more closely with our MDT colleagues and would welcome any input and advice from SLT and OT :)
Melissa B 13 Mar 2024
This sounds like an invaluable and much needed provision. During my years in CAMHS, feedback from parents and YP on an ND pathway is often that they don't have any support in place pre or post diagnosis. This would help families understand the process clearly and also empower them to find the correct support and information needed. This project is essential! Good luck!
Laura 13 Mar 2024
Thank you for your feedback and support Melissa :)
Andrea Samways 12 Mar 2024
This has the potential to be an incredibly useful resource for children/young people and their caregivers/families. Having updated resources, support and contacts all in one place will be helpful for families. I really hope this can move forward asap.
Laura 13 Mar 2024
Thank you for your support Andrea, we hope to work with families to make it as useful a resource as possible for them.
Jo 8 Mar 2024
Much needed in Southampton. Thank you!
Laura 13 Mar 2024
Thanks Jo, we appreciate your support :)
kelly mulholland 8 Mar 2024
This is such a wonderful idea, will be a great asset to have for families who are waiting for assessments and diagnosis. Having everything in one place online will give families support at anytime when they need it. This could have a significant impact on so many families.
Laura 13 Mar 2024
Thanks Kelly, we really hope to make a difference.
Emma Rowland 7 Mar 2024
This will be so helpful and much needed and help families to feel more contained and clear on the next steps and what resources are available. It would be particularly helpful in terms of considering earlier prevention work and supporting and helping families further down the line if complexities increase, particularly in terms of EBSA or behaviour that challenges.
Laura 13 Mar 2024
Thanks, Emma and thank you for agreeing to be part of our working group - it will be really good to have involvement from a social care perspective :)
Sarah Thomas 7 Mar 2024
This sounds like such a fantastic idea and a brilliant resource for parents. Having so many useful resources in one place and content and support from different services and organisations working together will be great as it will make it so much easier for families to access and gain advice, information, and support from the most beneficial services.
Laura 13 Mar 2024
Thank you for your support Sarah :)
Nikki 7 Mar 2024
This sounds like a wonderful and much needed resource to bridge a gap in the city. In my role working with young people, parents and schools it would be so beneficial to have a one-stop advice location, so that services are all coming from the same page and working together with clear and consistent advice.
I wonder if in the future there could also be an element of a peer forum for YP to share their top-tips for navigating services and diagnoses too?
Laura 13 Mar 2024
Hi Nikki
thank you for your support and feedback. The idea of a peer forum is definitely something we can look at adding moving forward... great idea thank you :)
Kala 7 Mar 2024
This sounds like a great project and would really support young people and their parents both waiting for and who have received a diagnosis. Knowing where to go for what is so hard as a parent and young person but to have this all in one place would be so incredibly helpful - especially in those moments when you just need advice and guidance (outside of 9 - 5).
Laura 13 Mar 2024
Thank you for your support Kala, we are glad you think this will be a valuable project :)
Jo 6 Mar 2024
It just so happens that I attended my son's school today regarding neurodiversity.
One of the 'hot topics ' between the parents was "my child has been referred.......what now???" And "My child has a diagnosis........what now?????"
This platform sounds like it will be worth it's weight in gold and will be invaluable to parents and children at every step of their journey!
Laura 13 Mar 2024
Thank you for your feedback Jo.... the confusion and frustration you are describing is experienced by so many families - we hope this will help make difficult times a little easier.
Catherine 6 Mar 2024
What a great asset this would be. Being a parent that has been awaiting an ADHD assessment for my son for 2.5 years, and prior to that an ASD assessment, I know first hand how lost and alone you can feel. Having somewhere to be a source of information, resources and support would be amazing.
Laura 13 Mar 2024
Thank you for sharing your personal experience and thoughts with us Catherine, we hope that this will help others in a similar position feel less lost in the future.
Morgan 6 Mar 2024
If this project receives the funding that it needs, it could be a fantastic resource for parents and individuals awaiting diagnosis alike. I think the problem with a lot of NHS resources is that they are extremely underfunded and difficult to access, which puts people and families under a lot of unnecessary stress when usually people are already under huge amounts of stress when dealing with an undiagnosed condition or caring for a child with an undiagnosed ND condition. If successful, this project would allow people to get help and support much faster and the overall process to being diagnosed would be less frustrating and isolating for the individuals who have to go through them. I would love to see this project one day become widespread and be able to help struggling families and individuals across the entire UK.
Laura 13 Mar 2024
thanks you for your feedback and support Morgan :)
Maria Murphy 5 Mar 2024
What a fantastic resource for young people and their families. We know the waiting times can be long and this resource will be able to support whether the signs and symptoms are met for a referral which in turn will prevent a wait if not met. Ongoing updated information including the pathway will be invaluable to families to be fully informed of processes. It will be great to work with you when we are in one Trust. Incredible work, Well Done Laura.
Laura 13 Mar 2024
Thanks for your support Maria and for agreeing to be part of the project team. It will be great to have Hampshire CAMHS on board and to see how we can make this work across the south if successful.
Justin Oakley 5 Mar 2024
Sounds like an amazing idea.
Hopefully this will become something that parents/carers will need to help them along.
Laura 13 Mar 2024
Thanks for your support Justin :)
Lucy 5 Mar 2024
This sounds like a fantastic resource that would be invaluable to parents/carers and their families. The journey to assessment and diagnosis is overwhelming and exhausting and to have all of this information in one place would make the whole journey much less stressful. An easy place to go for information, advice and resources at a time that suits parents/carers would make things so much easier, especially when information that is given by professionals can be easily forgotten or misplaced when feeling overwhelmed.
Laura 13 Mar 2024
Thanks for your support Lucy, I'm pleased you think a 'one stop' portal will be helpful for families and services.
Stephanie Ennis 5 Mar 2024
This is a really wonderful idea and much needed as the demand of ADHD assessment only seems to keep rising. The journey to assessment and beyond can be very confusing for parents and young people so a place like this with info and resources in one place would be invaluable to help the process seem more transparent and less daunting. I think it will be really helpful to have other local services included all in one portal so that it is clear who people can go to for support and at what stage.
Laura 13 Mar 2024
Thanks for your support Steph :)
Amy 5 Mar 2024
This sounds like a much needed resource for exhausted families who often don't know what information to trust. They're often told different things by different services and it just leads to more stress and confusion.
Laura 13 Mar 2024
Thanks for your support Amy, hopefully this will take some stress out of an already difficult time :)
Amy Billows 5 Mar 2024
This sounds like an absolutely amazing idea! There's so many people on the pathway that just want access to information about the next steps - they may be told, but there's so much information given, bits and bobs are bound to be forgotten. This could save lots of unnecessary contact with places like CAMHS etc, allowing more time to help where it's needed - I myself would have been really grateful for this service.
Laura 13 Mar 2024
Thanks for your support Amy, hopefully the portal will provide a place where families can access information and return to whenever they need it - no more lost information or conflicting advice :)
Nicola 5 Mar 2024
Sounds fantastic. It will be invaluable to families to have one dedicated place providing information at every stage of the diagnostic pathway, and brilliant to have the collaboration of local community services and support. Knowing how and where to access support and resources will relieve some of the frustration while families are waiting.
Wishing this project every success and hoping it can expand further.
Laura 13 Mar 2024
Thank you for your support Nicola.. we hope that if its successful we can expand it too - depending on the needs and feedback that we receive from young people and their families.
Katie Birts 5 Mar 2024
This sounds like a fantastic idea. Many of the families we work with would appreciate having one place to go that they can access remotely throughout their ND journey (which can feel long, confusing and lonely). It feels as though this resource would allow greater transparency and support throughout the process and allow services to come together to support families.
Laura 13 Mar 2024
Thank you for your support Katie :)
Vicki Russ 5 Mar 2024
Sounds like a brilliant idea - I'd imagine parents and carers would find it very helpful and containing to have an 'on duty' team to contact for advice and signposting, and would hopefully prevent difficulties from escalating any higher. There are so many great organisations offering valuable support - this sounds like a fantastic way of linking up the support available.
Laura 13 Mar 2024
Thanks for your feedback Vicki - we will aim to provide advice and signposting to families in times of need to prevent escalations into crisis :)
Angi Carey 5 Mar 2024
I'm really interested in hearing more about how this develops. Access to resources for my daughter, a young adult, have been difficult to obtain. As an ND young adult with dual diagnoses and more, the information proposed would have helped us a lot as we navigated the system both when she was under and over 18. Thanks for getting this off the ground and I'm sure will help and support many many families as a one-stop shop to find everything they need. For us strategies and ideas for problems as they arose would have been the best help at the time. Information available at our fingertips without wading through websites, leaflets and books. We were often too exhausted to look very far.
Laura 13 Mar 2024
Thank you for your feedback Angi and for sharing what would have been valuable to you over your journey we will use this to help shape our project :)
Teresa 5 Mar 2024
This looks like a much needed idea to put parents and carers understanding at the forefront of the process. So many are waiting patiently and this would be so helpful. Great collaboration, working together to improve the pathway.
Laura 13 Mar 2024
Thank you Teresa!
Gill 5 Mar 2024
I think this could really help families understand not only the referral process, but what other support there is across the city. So often families are trying to find out all this information whilst also struggling to meet the needs of their own children. It can be exhausting, so to have it all in one place, would take some of the pressure off whilst they are waiting for assessments and medication. Often CAMHS, education and social care all work separately, so to bring them together to offer the best support for families can only be a really good thing. It would be a really positive step for Southampton.
Laura 13 Mar 2024
Thanks Gill, I am looking forward to working with you and the staff and families of Reminds to help shape and make this happen!
Kerstin 5 Mar 2024
This would be amazing. 2 of my children are awaiting their diagnosis the wait times feels challenging and somewhat worrying for our family. With a support network it's not as isolating and much appreciated. I cannot wait to hear more
Laura 13 Mar 2024
Thanks Kerstin
If you have ideas on what would be helpful for you while you are waiting, we would love to know....
Anna Gibson 5 Mar 2024
This is a brilliant idea and will be so helpful for families accessing services to have one place to go to find out all the information and support available to them every step of their journey. I know so many families at all stages of the diagnostic pathway who would benefit from everything being all in one place and being able to easily find the resources and support they need. I love how it will be tied into local organisations who offer support.
Laura 13 Mar 2024
Thank you for your support and feedback Anna :)
Sue Fletcher 5 Mar 2024
This will be very helpful and a wonderful resource for families in supporting their children and young people with ND. CAMHS receives many calls and enquiries regarding ND and having resources easily accessible on-line that CAMHS clinicians can signpost will create an efficient way to provide the support and information in helping families understand and manage the complexities of ND conditions.
Laura 13 Mar 2024
Thank you for your support and feedback Sue :)
Fiona McFegan 5 Mar 2024
What a fantastic idea this would be a ideal for the families waiting for different appointments and diagnosis and in a frustrating ,worring time they would have this to refer to and hopefully help them and in the future
I really hope you get the funding needed to make this a reality.
Laura 13 Mar 2024
thank you for your feedback and support Fiona :)
Karen Parkins 5 Mar 2024
As an ADHD lead for another local CAMHS service this is such a good idea and something that everyone would benefit from accessing, it’s sadly a very under funded / under supported area of need and this really needs to be addressed. This could have a significant impact on so many.
Laura 13 Mar 2024
Thanks for your support Karen, its good to hear that neighbouring services think this will be valuable too!
Faye Osmond 4 Mar 2024
ADHD services are struggling nationwide and with the increase in awareness and social media presence this demand is only rising. This is a great idea to help families who maybe considering referral to a specialist service or possibly having to go through a long waiting period to get the support they need. In the age we live in now having access to resources online is a great way to get the help on a 24/7 basis.
Laura 13 Mar 2024
Thank you for your support Faye :)
Oona Svarc 4 Mar 2024
This sounds like a brilliant idea! What a creative initiative to support families across the city. It sounds like it will make the ADHD pathway at Southampton CAMHS more transparent, and will be especially useful for those who struggle to access traditional face-to-face support for financial reasons, accessibility issues etc.
Laura 13 Mar 2024
Thank you for your support Oona, we hope to make it as accessible as possible for families.
Lisa Teoh 1 Mar 2024
We have been looking at doing a similar thing in Torbay and South Devon, and created a child development App for parents.
Laura 13 Mar 2024
Thanks, Lisa, we would be interested to know feedback from families on the app and if there were recurring themes for support that families looked for.
best wishes
Laura
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