Q Exchange
We Wait Together
- Proposal
- 2024
Meet the team
Also:
- Rachel Merritt, PCN Business Manager
- Lisa Fox, Primary School teacher
- Mala Ubhi, ICB Clinical Lead for Mental Health, Learning Disability, Autism, and Inequalities
- Helen Ford, Deputy Director, Integrated Commissioning, Gloucestershire ICS
- Helen Jones, mum of 2 autistic children, runs support group
- Cashmir Martin, Social Prescribing Link Worker, registered social worker.
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?
It is estimated that up to 20% of school age children in the UK may have learning and thinking differences including Autism and attention deficit and hyperactivity disorder (ADHD), with families often waiting several years for a diagnostic assessment. Referral pathways are complex and communication between health, education and voluntary services patchy, leading to disjointed care, poor patient experience and multiple system contacts.
Lack of professional knowledge, communication failures, lack of person-centred care, stigma, and culture are all barriers to accessing care.
We will identify young people on waiting lists for assessment, appoint a care coordinator and develop our Integrated Neighbourhood Team (INT) to help families navigate the system, access support, and help set up peer support networks.
QI methodology is the enabler for delivering care across our Primary Care Network (PCN), but QI knowledge and skills are limited. We will upskill colleagues to better develop, deliver and evaluate complex interventions.
What does your project aim to achieve?
We aim to;
- Seek to understand problems faced by families on waiting lists, using coaching conversations to identify what matters to them, identify barriers to accessing support and services, and identify possible interventions to improve their experience.
- Provide personalised support with a care coordinator signposting families to local services and peer support groups.
- Develop a directory of support offers
- Develop our INT by building relationships, improve and streamline communication between professionals in primary care, education, CAMHS, paediatrics, social services, the local Neurodiversity Network, other VCFSE organisations, and our community. This will improve flow through the system, speed up decision making, reduce handoffs, save time, and reduce distress for families.
- Organise and facilitate training to improve staff knowledge, skills and confidence to better support young people and their families.
- Boost our learning and improvement culture across our primary care network and upscale and spread our learning to other projects and localities
How will the project be delivered?
Building on learning from previous Q Exchange projects, particularly We Wait Well, we will improve and develop our approach to delivering and evaluating complex interventions. We will use population health management principles to identify the patient cohort, develop a personalised care offer and adapt our already successful virtual ward approach to MDT working. We will strengthen our links with the local community to identify and link with VCFSE offers and peer support groups.
A care co-ordinator will be appointed to help build relationships with colleagues across sectors, be a point of contact for families, build a directory of resources, conduct the MDT and organise and facilitate training for staff and families.
The project team will include members from all 5 network practices to develop relationships and embed a culture of improvement. Evaluation will include process measures, learning from focus group discussions, capturing patient stories, wellbeing scores, service usage, and staff surveys.
How is your project going to share learning?
Improving the experience and care for neurodivergent people is an NHS priority. For example, Learning Disabilities and Autism training is mandatory for all healthcare staff but the roll out is slow. We will facilitate training, sharing of knowledge and ideas to improve access to primary care across our network and the locality.
We will facilitate networking and training opportunities for families.
Following the Fuller Stocktake, there is already a lot of interest in better collaboration across boundaries, and Gloucestershire ICB are facilitating the set up of INTs across the county. Our PCN is one of six taking part in a prestigious NHS England South West Digital Neighbourhood Vanguard, using an AI tool and personalised, MDT, approach to support our frailty work.
In addition to our Q channel, this local and regional exposure will give us an excellent platform to share our transformation with an influential and much wider audience.
How you can contribute
- We welcome any experience in supporting young people with learning and thinking differences.
- We lack knowledge of VCFSE offers for this cohort; any thoughts on who we might reach out to?
- Please share your experience and learning from building connections and collaborating across sectors. Ideas for evaluation of this project will be really helpful.
Plan timeline
| 31 Aug 2024 | Discovery phase - staff and community engagement/focus groups |
|---|---|
| 31 Oct 2024 | Care coordinator appointed |
| 31 Jan 2025 | Identify cohort, build INT and agree programme of evaluation. |
| 30 Apr 2025 | 3 months evaluation |
Comments
Fran Butler 20 Mar 2024
This is such an important project particularly as waiting times grow for autism and ADHD assessments. It is good to see that the education is mentioned; it is such an important setting of focus given that there are strategies for helping teachers and the children themselves leading up to a potential diagnosis. When things go wrong at school and children are not understood this can become a slippery slope in many ways. A care co-ordinator is an ideal person to provide a link and hopefully have the time to suggest classroom strategies etc.
In terms of VCFSE there are various offerings around, many of them commissioned from Health or Social Care, providing education for parents and the young people themselves, and support though groups. See Autism Berkshire website as an example - the provide support for autism and ADHD in Berkshire West https://www.autismberkshire.org.uk/adhd-support-draft-jan-2024/
Mala Ubhi 7 Mar 2024
As NHS Gloucestershire Clinical Lead for Autism coupled with lived experience, I can appreciate the immense value in patient and citizen experience from this proposal. Through place-level, personalised support that this project would bring, young people and their carers / parents have potential to be empowered and supported to manage wide-ranging needs holistically.
Pieter Hein le Roux 9 Mar 2024
Thank you Mala, given your strategic position in the system combined with your lived experience, your comments carry extra validity and empathy. As a practicing GP, like you, I think these children and their families can fall into the gaps between various services as they wait for assessment. On a positive, and taking the learning from our current 'We Wait Well' QExchange project, we think our care coordinator idea will really support this cohort of children and their families.
Steve Rudd 7 Mar 2024
Sharon, Hein, Rachel and team - this is a fantastic idea and really needed. I wonder what the scope is for expansion with other interested PCNs who neighbour your patch (of which mine is one!)?
If that's too big thinking for getting this going (and I really wouldn't want this to hold up your project), updates on the approach and progress made would be really appreciated please - whether that's through our current forums (as I'm sure others would be eager to learn from you too!) or through a project highlight report that's circulated to interested stakeholders.
Well done on such an important initiative.
Pieter Hein le Roux 9 Mar 2024
Thank you Steve, like you, we are all about collaboration and sharing. We have learned a lot from your PCN's transformative QI project on prevention in the mild frailty cohort. Health care can still feel competitive and, I think, these QI projects can help us model the collaborative behaviours we need to learn how to improve patient care. Given the pressures on all of us in terms of rising activity, limited capacity and financial constraint, if makes sense now more then ever, to focus on integration and delivering at scale. We would be keen to share and collaborate, where ever we can. These children and their families are vulnerable and deserve better. Thank you once again.
Cashmir Martin 7 Mar 2024
This is such an important project that will make a huge difference to so many children, young people and their families. In my previous role as a social worker, it was very clear there is a significant gap in services for children and their families prior to receiving a diagnosis. This is a period where families can often feel anxious, overwhelmed and uncertain of what comes next, and this kind of support would make such a difference in giving them opportunities to feel held and supported in their local community. This in turn reduces the risks of potential family breakdowns in the future as families can begin to build a support network much earlier than waiting for a diagnosis.
Pieter Hein le Roux 9 Mar 2024
Thank you Cashmir, I can't agree with more with both you and also Sharon's comments. We see these unfortunate children and their families all the time in primary care and they can bounce around various professionals as they wait for onward referral to hard pressed services. We have a lot of expertise in 'our place' including from your past experience and the opportunity we have is to take a joined up population health management approach coordinated by our care coordinator. I think this will be a 'win win' for the children, their families and the health professionals supporting them.
Sharon Drewett 7 Mar 2024
Thanks Cashmir, working as an SPLW and with your hugely valuable experience in your previous role, you will be such a great asset to our project team. Your reference to support networks and the community are particularly important. Families have so much knowledge between them; linking them up to each other to share information and for peer support will be a key part of this project.
Rebecca Skitt 6 Mar 2024
I fully believe there is a need for this and agree with the estimate provided. This support would make a difference to the individuals and family involved. Referral pathways are complex and ever changing. This will support everyone involved and having a point of contact for parents/family and professionals has already benefited in many other areas in which care coordinators are utilised and have been implemented. From personal experience, barriers in accessing support can often create poorer outcomes in health, wellbeing and education; which in turn can put more pressure on services delivering or providing care and support in the shorter/longer term. I would be very happy to be involved from a personal and professional perspective.
Pieter Hein le Roux 9 Mar 2024
Thank you Rebecca, your support is welcome and we all agree, this group of children and their families deserve better. I really believe that this project will deliver for them by allowing us to be much more coordinated and joined up in how we work.
Sharon Drewett 7 Mar 2024
Thanks so much Rebecca for your comment, we look forward to welcoming you to the project team!
Maria Loughran 5 Mar 2024
Delighted to read about this project, this work will be so important in supporting neurodivergent young people and their families as they navigate a system that is under resourced, yet impacts so many areas of life and education and wider society.
Pieter Hein le Roux 9 Mar 2024
Thank you for your support Maria, we really believe that by coordinating care and working with all the stakeholders in 'our place' and with the children and their families, we can improve their care and also improve the productivity of our workforce., a 'win win'.
Sharon Drewett 7 Mar 2024
Thanks Maria for highlighting the wider impact of families struggling to access support, and of course this can then lead to widening health inequalities and life chances later on. Hopefully our approach will be an early intervention which will mitigate against some of these.
Helen Jones 4 Mar 2024
As a mum of 2 neurodivergent boys and having run a peer support group for parents, I am delighted to read this proposal. This is desperately needed to help support families in a situation which is often overwhelming and isolating. Knowing where to turn, who can help and having support is what keeps parents going when things are tough.
Most parents don't go to the GP about difficulties until it is already a big problem for them. Answers need to be easy to find. I know from experience that a diagnosis only gives you a label, not actual help in dealing with the day to day difficulties. Support before and after diagnosis is essential and not easily available.
A couple of further thoughts/suggestions; how do we support dads, as well as mums, as they are often less confident/able to join peer support networks. Maybe an online forum would work?
The toll on the parent’s mental health can be heavy; perhaps an annual mental health check would be helpful?
How do parents who have children / young people with mental health difficulties (which in my experience is most) get support. There is a lot of shame in having children who are aggressive, talk about hating their lives, refuse to go to school and are selective eaters (to name a few) and having tools / support to handle these things would be great (not another parenting course please, none of us have the time or capacity to cope with another one). Maybe one off sessions focusing on a particular subject, led by someone who has first hand experience, and won't give just one size fits all answers.
Pieter Hein le Roux 9 Mar 2024
Thank you Helen, your lived experience examples and also your ideas are very powerful. I am interested in all your comments particularly your observations of being a Dad. I really think we can support people to feel better about their situation and give them hope.
Sharon Drewett 7 Mar 2024
Thanks so much Helen. Your lived experience will be invaluable to us on the project team.
Your questions and suggestions about dads, and how to support parents with their own mental health, and help them to support the mental wellbeing of their children are brilliant. I will try to work them into the (very word limited) bid and I Iook forward to discussing them further and taking them forward if we are successful.
Saskie Dorman 2 Mar 2024
I really like the idea of recognising early on what matters to people and helping to enable that - rather than a focus on ‘waiting’.
There’s significant potential too in learning from and with families with neurodivergence - many of whom have been finding ways to adapt and manage for years or decades.
Could you expand a bit more on how you anticipate sustainability beyond the initial project?
Pieter Hein le Roux 9 Mar 2024
Thank you Saskie, I think we have developed a 'recipe' for how we approach different populations based on our palliative care 'white board' care coordination model. I think the thinking behind this is generic and can be applied to any cohort of patients, as Sharon says, the key person is the conductor of our care orchestra - our care coordinator. Obviously, each cohort has it's own nuances to the care needed and we will aim to develop a 'care bundle' of interventions for these children and their families - and include them on that journey (as we have with our other projects). There is so much learning, collaboration and sharing potential and we would like our Q friends to keep helping us change the culture of health care. Continuous improvement is at the heart of our efforts.
Sharon Drewett 7 Mar 2024
Thanks Saskie.
As you say, we have so much to learn from and with families, and this will be an important part of the project. By building a directory of support offers and services, sharing learning, supporting training and support families to develop peer support networks and groups, we hope to enable families to navigate services and support offers more easily going forward.
The Care Co-ordinator role is one those funded under the Additional Roles Reimbursement scheme and is becoming ever more important in primary care, often supporting people towards the end of life. If we can demonstrate the value of a co-ordinated approach with this project, I anticipate other PCNs will be keen to follow suit and use some of their Care Coordinator allocation to support this cohort of patients.
Kendra McMahon 1 Mar 2024
Fantastic project!
As a parent trying to do the best for their child -and already well into the second frustrating year of trying to get things moving-it can’t happen soon enough!
Pieter Hein le Roux 9 Mar 2024
Thank you Kendra
Natalie Towle 1 Mar 2024
A game changer for both GP/primary care team and families. How much time do we spend trying, but not always succeeding, in helping families navigate the system? Care Coordinator have been really successful in helping families with vulnerable older relatives. It would be great if replicated for young patients. Allowing families a direct line in to the surgery, as families with older vulnerable patients now have with our care coordinator, will help families and surgeries alike. And stop families having to explain their situation time and again.
Pieter Hein le Roux 9 Mar 2024
Thank you Natalie, your comments hit the nail on its head!! We are all working and trying so hard to support but the challenge is that we haven't been coordinated in our efforts and so having a care coordinator to conduct the orchestra and be the point of contact will improve care for these children, their families and also improve our productivity.
Alison Scott 29 Feb 2024
This would be an amazing project to be part of, to be able to streamline the process and enhance the patients journey.
Pieter Hein le Roux 9 Mar 2024
Thank you Ali, so much potential for this group of children and then learning to share for many other workstreams in our PCN and also much wider.
Sally Lane 29 Feb 2024
This is a project that is very much needed.
As a previous Assistant Headteacher and SEND Co-ordinator of many years I have first hand experience of the difficulties that Parents face when trying to navigate the pathway and processes involved in obtaining access to the relevant medical professionals in order to secure much a needed diagnosis and further support for their child. Additional funding for support for children in school can be linked to EHCP's which often rely upon a diagnosis. The Pathway is long within the Educational system and children are sometimes left floundering. A project that promotes joined up thinking and collaboration between all sectors would seek to improve the journey for parents and their children. Parents need to tell their story once and be supported throughout.
A care co-ordinator would be an invaluable resource which would help to improve access to services and support for all families thus securing more positive outcomes in Education and Health.
Having recently taken the Lead in arranging reviews for our LD patients, by talking to our patients and working with them to ensure they have access to relevant health checks, I can confirm that a personalised approach is what was needed. Establishing relationships and building trust through a Care- Co-ordinator is paramount.
The training and upskilling of all involved can only be of benefit to our Vulnerable patients and their families.
Pieter Hein le Roux 9 Mar 2024
Thank you Sally, your experience from both education and also health are very powerful. As all the comments demonstrate, we don't always need more professionals in 'our place' as there are many skilled and caring people already there, AND what we need is a coordinated approach which includes the children and their families - health care is way too ad hoc and piece meal and the opportunity of taking a 'integrated neighbourhood team' approach will allow us to be systematic and will be a real game changer, in my view. I just wish we had started thinking like this many years ago, but better late then never. Thank you.
Sharon Drewett 7 Mar 2024
Thanks so much Sally. Great comments. Your previous experience in education is so valuable and your enthusiasm for your current role supporting vulnerable patients is amazing. I hope you will join the project team if we are successful.
Michelle Quinn 29 Feb 2024
This is a fantastic idea and thanks to the team for putting this proposal together. I am a GP, Practice Safeguarding lead and also the mother of a 23 year old autistic young man, so I am acutely aware of the difficulties faced by parents trying to access help and support for their children. The wait starts long before the actual referral, with school or nursery based information gathering and reports, Educational Psychologist reports, parental reports to be completed, parenting course attendance and numerous other potential hurdles before the referral can actually be sent off. Parents often find themselves being bounced to and from the GP and school, trying to gather all the necessary information, all the while having to manage challenging behaviour and other difficulties, without a diagnosis and without the level of support that they need.
It would be fantastic for parents to have a named person to help them navigate the pathway and I fully support this project.
Pieter Hein le Roux 9 Mar 2024
Thank you Michelle, like so much improvement in what we do, lived experience is such a powerful driver for making the world we live in a better place and will help us deliver for these patients and their families. Personal stories , such as yours, are an important way to galvanise sometimes disparate teams into focusing their efforts into a shared goal - a 'team of teams' approach is what we need here with the help of a care coordinator and the support of people like you . Thank you.
Sharon Drewett 7 Mar 2024
Thanks Michelle for your well informed comment. As you say, the challenges for families start well ahead of the referral, and as well as having a named care co-ordinator, linking families together to share information and for peer support will be key.
Caroline Osborne 29 Feb 2024
This will be an interesting initiative. Strengthening ties between Primary Care Mental health, Education and paediatric care is paramount as often families feel that they have to retell their stories over and over which makes them feel battle weary and not listened too. Hopefully early intervention will support patient outcomes and help prevent the younger generation having poor experiences in education and areas which will impact on their wellbeing and mental health this reducing referral to these services
Pieter Hein le Roux 9 Mar 2024
Thanks Caroline, you are spot on with so many people / teams in this space but have often worked in silos with little collaboration meaning families have to keep telling their stories which is annoying for them and wasteful of time for us (and them!!). We are going to have to learn how to do this and with the right mindset and care coordinators - we will!
Sarah Hepple 28 Feb 2024
This is an excellent project idea and I fully support it. Would it maybe be helpful to look at our current patients with autism and invite them and/ or their parents to feedback on what they feel would have helped them when going through this process. So you have a snapshot of where we're at to help formulate SMART goals going forward. Having a coordinator to contact will help greatly in terms of streamlining the process and being a source of support for families.
Pieter Hein le Roux 9 Mar 2024
Thank you Sarah, you raise an important point and almost the first job, should we be successful, will be to collate the list of patients that individual clinicians across the PCN have referred to various services so we can reach out to people and start care coordinating. Whilst everyone, including jobbing GPs like you, are working incredibly hard we don't work to a shared goal or aim and the introduction of a conductor (care coordinator) to our care orchestra will hopefully improve patient care whilst also freeing up capacity as we learn to work together - synergy (the whole is greater then the sum of its parts!!). Thank you
Sharon Drewett 28 Feb 2024
Great idea, thanks Sarah. We will build in a few focus group meetings early on to explore exactly those things, as well as asking 'What Matters to Me' in terms of goals and support during and after the diagnostic phase.
Isheanesu Mupfupi 28 Feb 2024
This will be a good project for families and practice workload indeed. It will help with getting paperwork and stop us using GP time to just tell families to and gather more information for referral. The care coordinator will be helpful whilst they wait, so that they have a link. Lots of families on the patient list would benefit from this work.
Pieter Hein le Roux 9 Mar 2024
Spot on Ishe, as a jobbing and committed GP / clinician, you totally get our collective challenge and also what the solution is. Improving how we work across the various patient / clinical interfaces will improve patient care whilst freeing up precious clinician time. Thank you.
Sharon Drewett 28 Feb 2024
Thanks Ishe for your comments. I think we are all acutely aware that families often get bounced from pillar to post, and hopefully this project will help streamline the process and reduce distress all round.
Rachel Hodges-Cox 28 Feb 2024
I fully support this project and am completely aware of the need for this type of support to help struggling famillies to engage positively with services and utilise all offers of support in their community and not just only NHS services.
Support to understand and navigate the systems in place would be welcomed by parents who are all ready struggling to manage daily living and find hope and support for the future..
This bespoke support would reduce pressure on surgery clinicians and would compliment community services
Pieter Hein le Roux 9 Mar 2024
Thank you Rachel and agree with Sharon's comments. As clinicians, we can medicalise and perhaps, over medicalise things (given that is our training) and the opportunity with projects like this is to de-medicalise and connect up with other community offers. You have done this so amazingly for so many of our patients and it has made a great difference to them - we need this sort of thinking in this space. There is a massive 'human element' to this project and you and your team bring that in bundles to our shared patient. Social prescribers are a wonderful adjunct to what we all do and have helped improve patient care. Thank you.
Sharon Drewett 28 Feb 2024
Thank you Rachel. In your role as a Social Prescriber I know you spend a lot of your time supporting neurodivergent people and their families and I hope this more co-ordinated, joined up approach will free up some of your precious time so you can focus your amazing skills and knowledge more widely.
Nicole Wilson 28 Feb 2024
This honestly will be such a game changer for families undergoing this uncertain and stressful time of waiting for the right support, assessment and diagnosis to meet the child's need! I can think of many families whom will benefit from this project.
Pieter Hein le Roux 9 Mar 2024
Thank you Nicole, this links so importantly with your incredible strategic work in improving care navigation so patients get what they need first time which improves their care / experience, improves practice flow, creates capacity (by reducing hand offs) and importantly improving the working conditions of our precious clinicians. I think this project will be an important adjunct to your work. We need to join all these things up so we improve care for patients and make our lives more sustainable. You are a star - thank you.
Sharon Drewett 28 Feb 2024
Thanks Nicole, I suspect most GPs will feel the same! It is so frustrating and upsetting for us, as well as families, when people come to us in distress and yet we often can't help due to difficulty navigating the system or lack of knowledge/skills/time to do so. Working together as a 'Team of teams' will hopefully improve outcomes for everyone
Liz Shermon 27 Feb 2024
This seems like an excellent project. Will no doubt be a welcome source of support for families navigating a complex pathway with individual challenges along the way. Hopefully better education and connections will improve the overall patient journey and experience, resulting in better outcomes.
Pieter Hein le Roux 9 Mar 2024
So true Liz, I also think that health inequalities haunt this cohort of children and their parents and we will have to learn how we better reach out to these people (traditional communication channels don't always work) so we can maximise engagement and traction of interventions. This will be one of the key learnings and we need to share any successes and also things we try that don't work. Part of our measurement strategy needs to focus on identifying groups that are prone / susceptible to inequalities so we can measure / evaluate what improvement we make. Theoplots might be a useful tool in this space. Thank you.
Sharon Drewett 28 Feb 2024
Thanks Liz. I think that staff training, and looking at how we support access to our surgeries, will be so important. For example, we will invite people and staff to look at the physical environment of our surgeries, and consider how we can make all patients feel welcome and safe when they come to the surgery. This should improve the patient experience and help reduce health inequalities.
Eileen Bowden 27 Feb 2024
this is a fantastic Project ! and welcome this project to help improve the access to clinicians, upskill staff , whilst also facilitating the interlinking between networks and boundaries.
Pieter Hein le Roux 9 Mar 2024
Thank you Eileen, you get this!! There is so much cross learning from other things we are doing and that you are leading on especially our respiratory cohort of patients. Sharing our learning will not just be about spreading the project to other places, but also thinking about other areas / pathways / patient cohorts we can apply the learning to. Thank you.
Sharon Drewett 27 Feb 2024
Thanks Eileen. In your role as a practice nurse and ANP I know you are passionate about improving access and reducing health inequalities for vulnerable people, so look forward to discussing how we can take this project forward.
Comments are now closed for this post.