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Supporting parents to care for children with medical complexity

Families are doing complex healthcare procedures at home (e.g. feeding tubes and ventilation). Our project will pilot and spread ways to train parents and carers of children with medical complexity.

Read comments 71 Project updates 8
  • Winning idea
  • 2019

Meet the team


  • Helen Higham, Director of Oxford Simulation, Teaching and Research (OxSTaR) centre.

What is the challenge your project is going to address and how does it connect to your chosen theme?

Adults and children with complex medical needs are living longer, and are primarily cared for at home rather than in hospital. They and their family manage the majority of their care, with support from a multitude of different community and hospital teams. Family members do most of their care, including in some cases complex medical tasks, such as feeding tube care and tracheostomy care. In response to this shift towards self and family-provided care, it is vital that healthcare organisations become effective educators, as well as providers of care.

Our team has an in depth understanding of the problems across the pathway for children with medical complexity through analysis of incident reports, surveys with parents, parent Facebook groups and meetings with multidisciplinary groups of professionals. Training and support for parents and other carers is highly variable. Improved training and support will reduce readmissions to hospital and increase parents’ confidence.

What does your project aim to achieve?

Our project aim is to establish how best to train and support parents and other carers across multiple organisations who care for children with medical complexity. Poor quality training leads to avoidable harm, unnecessary hospital admissions and stressed and anxious parents. We will initially focus on the Thames Valley region and seek to develop a template for training which can be used across the country.

Co-producing training for parents and other carers

We previously co-produced booklets about feeding tubes for families used by hospital and community teams across our region. We are seeking funding to develop training further through videos and simulation training. Parents will be involved in co-producing training materials and will be part of our project team. We will evaluate our training through surveys with parents and carers using both quantitative and qualitative data. We will share the materials and methods outside our region, to support teams across the country.

How will the project be delivered?

Bethan Page will manage the project as part of her funded PhD. We will fund a children’s nurse to pilot simulation training with families and develop videos. We will cover expenses for parents who will be a key part of our team, including a couple of parents we have worked with before.

We have an established multidisciplinary team of children’s nurses and paediatricians from the acute, community and palliative sector. Some of us met previously through Oxford Patient Safety Collaborative (part of the AHSN). OXSTAR simulation centre are a key part of our team and will help with the hands-on training. For the videos we will be collaborating with the PIER network and Southampton Children’s hospital.

We will connect with Q members interested in paediatrics, home care and training through the special interest groups, Twitter and Q events. Children with medical complexity are a critical patient group: they see a multitude of different professionals and are high-users of healthcare resources.

What and how is your project going to share learning throughout?

We will think carefully about where to host the videos to reach the widest possible audience. As well as sharing findings with our personal networks of interested professionals and charities, we will share learning through Q, national organisations (e.g. the PIER network) and charities (e.g. Well Child).

We have previously published a paper analysing patient safety incidents for children with feeding tubes cared for at home. Having a researcher as part of the project team will enable us to write-up our work as academic publications. We will also be active on Twitter and parent Facebook groups promoting and sharing our learning.

Our project will be of wider interest to Q members outside paediatrics. Family-led care at home is also commonplace for care of the elderly and those with chronic conditions. We will share our learning on developing training for parents with professionals who are teaching patients and family members to provide any type of care.

How you can contribute

  • Ideas from anybody who is involved with teaching/training patients or family members to do medical tasks at home.
  • Support with putting us in touch with healthcare professionals who work with children with medical complexity across the country.
  • Putting us in touch with any parents who might want to support this project.
  • Any ideas for improving our project.

Plan timeline

1 Dec 2019 Stakeholder meeting to discuss plans for videos/simulation
5 Jan 2020 Small scale models for simulation training to be ordered
1 Mar 2020 Start piloting parent training using simulation and models
1 Mar 2020 Video creation to begin after family consultation period
1 Jun 2020 Stakeholder meeting to review progress
1 Jul 2020 Finalise evaluation plan for videos
3 Aug 2020 Videos begin to be shared and evaluated by parents & carers
5 Oct 2020 Event to share progress with community and hospital teams

Project updates

  • 17 Aug 2021

    Our project is now complete. All the videos and resources for parents on gastrostomy care are available here:

    You can also find the videos on Youtube by searching ‘gastrostomy’ AND ‘OxSTaR’ OR ‘Oxford’.

    We are doing an online launch to help publicise the videos and resources on September 16th 2021 3-4pm. Please sign up through Eventbrite if you would like to join: SIGN UP HERE

    If you would like any further information about the project, contact

  • 8 Mar 2021

    Our library of videos to support parents to care for their child’s gastrostomy is now available :

    There are 19 videos featuring parents, nurses and consultants from the hospital and community sector. Please share the videos widely with relevant colleagues.

    On our website there are also additional resources for parents, including a short quiz.

    We are currently evaluating the videos with parents and healthcare professionals who support children with gastrostomies. Please contact me oat if you would be willing to complete a short evaluation survey rating the videos- we will send you a £10 Amazon voucher as a thank you.

  • 27 Aug 2020

    A recent update from the project

    Parent survey

    • 107 families have completed our survey on their training and support needs for gastrostomy care.
    • Parents’ experiences of training were highly variable. Most families received verbal information and demonstrations on how to care for their child’s gastrostomy from a healthcare professional. 14% of families had practiced on a doll or with some equipment as part of their training, and 3% had been shown videos.
    • 36% of families said they were slightly confident or not at all confident in the first week at home caring for their child after gastrostomy surgery. Only 11% said they were fully confident.
    • Families rated videos and simulation training as “very useful” and more useful than written booklets and online training.
    • Families rated Community Children’s Nurses and other families and facebook groups as the most useful sources of ongoing support with caring for their child’s gastrostomy.
    • Families were shown an initial video from the project and asked to give us feedback on what they liked about the video and how it could be improved. Families particularly liked that the video was filmed at home and seemed “real”, and said the instructions were clear and simple to follow.
    • The majority of families wanted videos to feature both parents and healthcare professionals.
    • 97% of families wanted at least some of the videos to be filmed at home (rather than in hospital).

    Video development

    • We have created three videos so far on gastrostomy care. The videos have been evaluated by our stakeholder group of healthcare professionals from the community and hospital setting and our parent representatives. Our video editor is now making some small edits to improve them based on the feedback.
    • The two childrens nurses who are supporting the project are developing the next few videos (care of the stoma site, venting and an introductory video on what a gastostomy is)
    • We will be asking around 100 families from across the country to evaluate the set of videos later in the year, and wider group of healthcare professionals.

    Simulation & hands on practice

    • Alex (paediatric surgeon) has done surgery on Polar the teddy- he now has a gastrostomy button. Polar will be used for training families so they can have hands on practice before trying procedures on their own child. Polar will also feature in some of the videos.
  • 1 Jun 2020

    What have you learned so far, either from the successes you have had or from where things haven’t gone to plan?

    In our April meeting we discussed the possibilities of focusing the project more on online training resources for families and staff. COVID-19 has refocused our minds on the opportunities technology provides, such as opportunities to provide individual or group troubleshooting and teaching session using video conferencing. Any training we believe also needs some face-to-face hands on component, which for now we have had to put on hold.

    Over the past few weeks we have collated a list of existing videos for gastrostomy and tracheostomy care and are now rating the existing videos, and identifying gaps where we need to create more of our own videos. We created a few short videos prior to lockdown with one of the parents working with us and her children. We are exploring ways to do some filming with staff during lockdown to supplement our existing footage, including short clips filmed over Zoom.

    Prior to lockdown we had some 3D printed models for practicing changing a gastrostomy button designed. Social distancing requirements have put on plans for face-to-face simulation training on hold, but we hope we will have to resume them soon, as we know any videos and online resources need to be supplemented with hands-on face-to-face training. COVID-19 has brought both challenges and opportunities to our project.

  • 1 Jun 2020

    What could others learn from your experience of working with a range of stakeholders and collaborating across boundaries (geographical, professional, sector) – including what is working well and any challenges you have faced?

    We have a very supportive group of parents, nurses and consultants helping with this project from across Oxford and Southampton. We met in person as a wider group in January and had a “virtual” meeting at the end of April, attended by 18 people (nurses, consultants, parents, researchers). It was great to have so many people on the call, despite clinical commitments due to COVID-19.

    One of our ambitions for the project is to begin to standardise training for parents, healthcare professionals and other paid carers who provide care for children with complex medical needs. At the moment, these different groups receive different training and information, despite the fact that they are all doing the same basic procedures and caring for the same children. Our vision with the videos and online resources we create is that they can be used for training anybody, whatever their role, parent or professional. This is difficult to achieve in practice as lots of different organisations are involved, and have different policies in place. In our videos we will have parents, community and hospital-based healthcare professionals featuring to demonstrate our collaborative approach. Most existing videos we have identified are hospital-focused, often relying on plastic mannequins rather than demonstrations on children which are parent representatives tell us is so important. We have some video footage filmed with a mother and her children at home; the home is where most care is provided so we want the home environment to feature a lot in our videos. We have plans in place to do more filming, featuring community and hospital-based staff so all groups are represented.

  • 4 May 2020

    We had a first “virtual” meeting at the end of April, attended by 18 people from Oxford & Southampton (nurses, consultants, parents, researchers). We primarily discussed the possibilities of online training for families and staff, through videos and interactive troubleshooting sessions with clinicians. There still needs to be some core face-to-face training, but we are unable to pilot this at the moment while social distancing is in place. We are focusing our immediate efforts on collating existing videos, and quality assessing them. We will next meet in July.

  • 9 Mar 2020

    We had a planning meeting on the 22nd January, attended by parents and nurses and paediatrians from the hospital, community and third sector, researchers and our collaborators in Southampton from the PIER network. Plans are underway to second a nurse to work on the project and to collect baseline data with families and other staff and carers looking after children with feeding tubes and long-term ventilation. We have created a few initial videos with one of the parents we are working with and her son and daughter, filmed in their home.

  • 9 Mar 2020

    Bethan Page and Emily Harrop presented at the CoLab conference on the 31st January at Birmingham Children’s Hospital. We talked about our plans for the Q funding and showed a preview of the training videos we have started co-producing with families. The CoLab is a new UK-wide network to improve the care of children with medical complexity:


  1. Read more about the challenges experienced by parents caring for children with complex medical needs in our publication:

    "Families have substantial expertise that needs to be valued and listened to, but they need help to ease the burden of care, and more preparation and support for the responsibilities they undertake. There is a clear psychological impact on the whole family which needs to be core to the preparation and support parents receive."

  2. I would like to add my support for this important piece of work that addresses  a key area of complexity and one where parents, children and those who care for them will benefit enormously.

    The voice of parents,carers and the nursing and medical staff who care for this group of vulnerable is so key to understanding the reality of  caring for children with complex needs and having practical tools and support available that is researched and evidence based is simply fantastic. I wish you the very best of luck with your submission and will follow your progress with interest.

  3. Dear team

    Very excited about this project. The co-design element in this group of patients is vital. I am medical lead for a team looking at improving the journey for this group of patients. We will be watching closely. Happy to contribute also.

    good luck!


  4. Guest

    Charles Vincent 2 years, 10 months ago

    I have to declare an interest in being involved in the project. This is however an important project, both for parents of these children with complex needs and as an exemplar of the support that is desperately needed for care in the home for anyone frail or vulnerable. The  home is the next big challenge for patient safety and will need to be understood very differently from safety in hospitals.

  5. I have followed this conversation for a while now and am greatly encouraged by the positive co-production values expressed in many of the comments posted by patients, carers and professionals alike. Whilst we all recognise that "Necessity is the mother of invention", our inventiveness, when supported and encouraged in the right way and at the right time, can have life changing consequences. The journey for many patients and carers has often been a lonely uphill struggle, but this project is testament to what can be achieved together. Well done!

    1. Thanks Douglas for your support and comments. We hope our project is one is step in helping parents with complex needs children, who already have lots on their plates, to empower and equip them to do what they could/want to do. Thanks again. Best wishes, Alex

    2. Thanks for your support Douglas. I'm currently writing a paper on some interviews with parents of kids with complex medical needs. Some of their experiences, as you can imagine, are very difficult to read. There's certainly much to be done to provide better support.

  6. I have a beta site where on-line instructions can be developed and tested with patients - and it's free! I'd be happy to develop a trial for your project if you think it would add value.

    1. Thanks Thomas for your interest in our project. It would be very helpful to explore online systems that would help to facilitate and assure learning by the parents. Thank you. Alex

    2. Hi Thomas

      Thanks for getting in touch and for the kind offer- I'll send you my email as it would be good to discuss. We have talked about the potential for a website for parents with videos, information, mini quizzes and signposting to useful charities etc. Not quite at that stage yet but it's part of the long term vision.

      Best wishes, Bethan

  7. Guest

    Helen Higham 2 years, 10 months ago

    The healthcare landscape is set to change dramatically in the first few decades of this millennium with increasingly complex treatment requirements set against a backdrop of limited resources and a focus on care delivery outside hospitals. This project is perfectly designed to provide support and training, co-designed with the carers who will benefit from it, for parents of children with gastrostomies.

    We have been using simulation and other technologies to enhance learning for healthcare professionals for several decades now - it's time those resources were focused on others who need them.

    I'm very excited to be a part of the team and will keep everything crossed for the announcement in November!

    1. Thanks Helen for your comments. We are very grateful to have OxSTaR (Oxford Simulation, Teaching and Research) centre to host our project. The infrastructure and expertise at OxSTaR especially in simulation will be of tremendous help to our project. We certainly have vast experience in simulations (especially in minimal access surgery for me) for training and learning for healthcare professionals, we can certainly adapt the simulation methodologies to a wider audience. I look forward to co-producing materials and delivering simulations with parents/carers for the benefit of children being cared at home. Best wishes, Alex

  8. Guest

    Fiona Reynolds 2 years, 10 months ago

    This is an important project. As the medical director of one of the children’s hospitals (Birmingham) this addresses an important and increasing issue. The number of children who are dependant on technology is increasing exponentially (at least in long term ventilation the figures are really going up tHat rapidly) We need to work our ways to help parents do care for their children. If it works it will improve patient reported outcome and reduce complaints - extrapolated evidence from our work with tracheostomies a decade ago. I would like to know the resources are transferable and will work in other parts of the country.

    1. Thanks Fiona for your comments. With medical advances and improved care we are seeing children surviving much longer and often into adulthood even with multiple complex medical issues. The challenge of CMC especially those chronically dependent on technologies will continue to increase.  There is a need to relocate the care of some of these patients from the hospital environment to home safely with adequate support and empowerment of the carers/parents. As a surgeon it is very easy to focus on fixing the "tube"/pathology and overlooking the child surrounding the tube and the family surrounding the child. We hope our project will not only provide training to our regional population but produce materials that can be used widely across the country for the benefit of these children and their families. Thanks again for your support. Best wishes, Alex.

    2. Thank you for your support Fiona. We will work to ensure the videos can be used widely across the country and think carefully about where they should be hosted to make them widely accessible (something we were discussing on Monday). With regards to simulation and hands-on practice, we are exploring options for small models e.g. for practicing changing a gastrostomy button, that are cheap to make. We also took a couple of parents to the simulation centre in Oxford (oxstar) to discuss how we might use existing resources used for training healthcare professionals with families. Are there any papers or reports from your work on tracheostomies that you could share with us? We've got a paper (currently under peer review) about incidents reports relating to trachys and ventilation at home which should be out later this year- may be of interest to you. Many thanks, Bethan

  9. Guest

    Linda Partridge 2 years, 10 months ago

    I would like to wholeheartedly support this project. This is such an important subject area and one in which I have focused on throughout my career. It is so important to build on the good practice already out there and look at how this can be shared. There is however an urgent need to focus on 1) others who are supporting parents and would benefit from access to training as well as 2) those delivering the training to ensure good governance etc. I have campaigned for dedicated training posts so that there is continuity for parents and carers and confidence in those delivering training - especially those who are very medically complex. The work already undertaken by this team will be invaluable going forward. More confident parents at home means fewer hospital admissions and a better quality of life for the family.

    1. Thanks Linda for your comments. I hope the NHSE LTP will bring opportunities to improve support to carers/parents in a wider sense. Our project will help to provide carers/parents with training and learning opportunities, including the use of various technologies, that parents currently have to learn within a short space of time. Indeed those helping the parents (eg relatives) may also benefit from materials/training to strengthen their input consistently. The ideal is to have fewer hospital visits with care safely delivered at or near home, achieving the Triple Aim in healthcare. Best wishes, Alex

    2. Thanks for your support Linda. Thanks for getting in touched. Very pleased you'll be coming to our next planning meeting- great to have your advice and build on the work you and others at Well Child have done. In our meeting with the PIER network on Monday we were discussing the content of training videos, and where there is overlap with the needs of healthcare professionals, paid carers, and parents. Our plan is that the videos we create can to be used by all groups to ensure everybody is working to the same standards (parents, healthcare professionals and other carers). Best wishes, Bethan

  10. Guest

    Katherine Boyce 2 years, 10 months ago

    As a parent whose child was very disabled and medically compromised, this is an extremely valuable study. Anything that helps empower parents to ensure the quality of life for their child is needed. The fact that it is looking at the subject holistically is to be welcomed.

    1. Thanks Katherine. The knowledge that many parents have often amazed me. Very often healthcare professionals especially those based in acute hospital do not appreciate the needs when the child is at home. Through this project we may also help to develop "parent-experts" who can be part of the team to help others and provide additional peer support. The health professionals can also in turn learn from the parents through this support network. Thanks for your ongoing support. Best wishes, Alex.

    2. Thanks for your support Katherine. Your point about ensuring we view things holistically is crucial. Very important that some of the content of the videos addresses what parents needs are beyond learning the 'mechanics of the tasks'. We should think about evaluation, and how we measure outcomes which are important to parents, like confidence and feeling supported. We can discuss more when we next meet. Best wishes, Bethan

  11. Guest

    Ronnie Smith 2 years, 11 months ago

    The subject of human error management is being taken seriously in hospitals across the country, but management of error when the care is taken outside a formal setting is also very important. This training is a cost effective way to help reduce errors amongst home carers and will improve safety and reduce the costs of correcting problems from human error. This is a fantastic project from a great team, who are committed to improving patient safety and supporting home carers.

    1. Thanks Ronnie for your comments. The importance of the carer's role in carrying out tasks traditionally done by clinicians is increasingly recognised. Many parents are keen to take an active role as part of the team looking after their child with complex medical needs. We hope to empower them and provide the skills they need, including knowing when and what additional help they need in various scenarios. Thanks again for your support. Best wishes, Alex.

    2. Thanks Ronnie. There's certainly lots to do regarding the safety of care outside of hospitals and other formal settings. So many other factors are involved- and there's very little standardisation in this area. Hopefully our project we help get people within and outside of paediatrics thinking more systematically about how to prepare and support family members and other carers to provide safe care at home and feel confident to do so. Best wishes, Bethan

  12. This is a great proposal from a really strong team in a much needed area. The proposal could be strengthened by indicating the type of support from the PSC and in particular, any potential QI developments that may be generated by the work. Also, I can see a strong interest in training for parents and carers on the technical aspects of technologies at home. It would be good to know how the training will cover the psychological needs of people who have navigate complex systems, and who are often alone in the level of sophistication needed to care for their loved one day in, day out.

    1. Thanks Jill for your comments. I agree that the psychological needs of these parents do need support too and the peer support between parents can be very powerful too. We will certainly look into the non-technical aspects as part of the quality improvement in the project.

    2. Thanks for your thoughtful comments Jill. We were discussing in a meeting last week the need to include psychological support as well as technical support in any resources we develop. One of the parents we are working with suggested a Radio 4 style Listening Project, with parents talking about their experiences and what they wish they had known early. I have a collection of pieces of advice from parents for new parents through surveys and interviews. Another parent suggested putting parents in contact with other parents, and FAQs, like where can I get clothes for my child (M&S do a good range for kids with feeding tubes). We will continue to link with the Patient Safety Collaborative and will discuss with them how best to work together in the coming weeks, and draw on their QI expertise. Thanks for your support Jill.

  13. As others above I echo the importance of this project.

    We are currently doing some very similar (non funded!!) work in this very area regionally in Wessex through our PIER network ( for which I am the improvement lead. As part of the same ODN's and links with our tertiary hospitals of Oxford and Southampton I would be very keen we collaborate if possible.  Particularly as a PIER lead for Thames Valley has just been appointed.

    Bethan please do get in touch -

    1. Thanks Kate for your support. I am aware of the PIER network as some of colleagues were part of it previously. It would be wonderful to collaborate with another network to extend the work.

    2. Thanks for getting in touch Kate. I'll send you an email today.

  14. Guest

    Karen Horridge 3 years, 1 month ago

    An excellent proposal. As a disability paediatrician, immediate past chair of the British Academy of Childhood Disability and chair of the Informatics for Quality committee of the Royal College of Paediatrics and Child Health, I appreciate the increasing technology dependencies of many children and young people with complex disabling conditions. Co-production with families will ensure training resources are relevant and accessible. Thought will need to be given to where the training will be delivered, to ensure access for as many families as possible.

    1. Thank Karen for your comments. The expansion of the medical device industry will no doubt continues and the complexity of the technologies involved will increase. We are mindful of the need to be equitable in providing the support and training as well as the need for older children especially as they transit to the adult world where is there is often a void in support.

    2. Thank you for your support Karen. We were discussing where training could be held in a meeting last week. There's various options including home, online through mobiles, hospital, Community Children's nursing visits. We will continue discussing with parents and come up with flexible solutions that work for families.

  15. Great project and strong team with relevant skills and expertise to deliver the work successfully. Putting co-production at the core of training materials development will ensure outputs are directly useful for those most at need. Looking forward to hearing more about this effort!

    1. Thanks Chrysanthi. We are pleased to have a multidisciplinary team of healthcare professionals as well as close collaboration with experts in psychology, human factors, education, 3D printing etc. The network established at our previous PSC work has certainly been very useful.

  16. Guest

    Hilary Cass 3 years, 1 month ago

    This is a tremendously important project and could not be more timely. As Chair of Together for Short Lives (national children's palliative care charity) and British Academy of Childhood Disability, I consider the issue of how we support parents to care for the rising numbers of medically complex children at home to be one of the most pressing issues in paediatrics. This is a really clear and practical proposal from a great team, so I do hope it will be supported.

    1. Thanks Hilary for your comments.

      We hope the project will also help everyone not only to concentrate on the care of the child but the health of the child. And to make the tasks less "medical" but simply to support basic human functions of feeding, breathing, etc.

    2. Thank you for your support Hilary.

  17. A great project - with potential for the learning to be transferable to many settings where complex care is carried out in the home - an increasing issue

    1. Thanks Katherine. There are indeed many generic elements that can be applied to other populations. Hospital at home will certainly be an important part of future healthcare for many patients that have been traditionally been cared for in the acute hospital setting.

    2. Thank you for your support Katherine. Yes I think there are very important implication for how we train patients and family members in the adult population too.

      There's some interesting comments in this IHI report on families provide complex care at home: The problems our project will address are certainly not unique to paediatrics.

  18. Guest

    This is a much-needed training in order to empower parents and carers to look after their children who are medically complex and often dependent on technology with confidence. Simulation-style courses will give parents and carers an opportunity to practice and carry out tasks in a controlled environment with full support of highly skilled professionals to ensure they are fully competent to care for their children away from a clinical environment. Training parents and carers well will reduce hospital admissions and enhance the quality of life for children and their families by enabling them to live at home with their families safely.

    1. Thanks Abi for summarising the key elements of our work in your comment. As the parents will be from different social backgrounds and varied abilities, we are mindful of the need of using different approaches in helping them to build up their confidence and to offer/direct appropriate support as required.

    2. Thank you for your support Abi. Feeling confident is so important for parents. The sense of responsibility can be enormous.

  19. Guest

    Adrian Clark 3 years, 1 month ago

    The reference to simulation training sounds like an innovative and potentially exciting approach to the subject of parent education. As we know from the aviation and other industries, the use of simulators is an excellent way to build up ‘muscle memory’ for practising unfamiliar techniques. If this study finds evidence that simulators help speed up or embed more deeply the techniques that parents need to become skilful at when caring for their children, then this would be a really valuable finding worth sharing.

    1. Thanks Adrian for your comments. We have established expertise locally with clinical simulation work and will involve local experts in the design of appropriate simulation material/models to maximise the learning (and to allow practice) by the parents.

    2. Thank you for your support Adrian. We can certainly learn a lot from other industries that use simulation extensively as part of their training. Whilst simulation is used to train hospital-based healthcare professionals, it is hardly ever used to train patients and family members. Given the complexity of care some parents are now providing, it seems that simulation could play an important role in their training.

  20. Guest

    Emily Harrop 3 years, 1 month ago

    This project follows up on known gaps identified by the research team while undertaking previous work supporting complex paediatric patients with technology dependence. The project has strong PPI support and would evolve by co-design with tow parents of children with complex medical needs.

    1. Our team with strong PPI support and parents involvement is central to the project. Unfortunately, as healthcare providers we are often clinician-centric and or hospital-centric. We hope to move towards patient/carer-centric care with support from clinicians and other providers.

  21. Guest

    Andrea Lambert 3 years, 1 month ago

    This project is so important. By creating resources that can be shared, then any nurse who delivers care and support  to this group of children will feel empowered to deliver training to parents and of course to young people who wish to be as independent as is possible. Currently training  parents is often viewed as the role of the Nurse Specialist or CCN .

    1. thanks Andrea for your comments. We hope the training can be between and across boundaries geographically as well as professionally. In addition, parents can teach and share with each other with support. For older children who are able to can then be ambassadors to support others.

    2. One of the other issues previous work has identified is that the CCNs, Special School nurses etc. who are responsible for delivering this vital training to families often have little or no training themselves in how to be trainers - they are trained to deliver care, not train others. Supporting them in this changing role is so important.

      The recent WellChild publication addresses some of these issues


    3. Thank you for your support Andrea. Creating and testing resources which can be used by lots of different services (community children's nurses, hospital teams, respite services, schools etc.) could be of real value. It's important to have consistency in training, so parents and carers get the same messages from across different services. Let's keep in touch.

  22. This project has great potential to increase return on investment once the research team shares the findings.  This type of training can be extended to provide family lead care for any complex condition. This is an excellent idea!

    1. Thank Milfred for your comments. I think we are only scratching the surface at the tip of an iceberg. The potential cost savings can be significant, as currently not only there are additional community nursing and hospital admission episodes which can potentially be avoided, the amount of waste of medical materials (eg additional gastrostomy buttons used and other "plastics" for feeding) is probably considerable.

    2. Thank you for your support Mildred. There are certainly potential economic benefits of better training and support, like reducing avoidable visits and admissions to hospital and call outs to community teams. We will evaluate family-centred benefits too, such as parents feeling more confident. We will share the training resources and methods we develop with teams around the country.

  23. This sounds like a really important project. I was wondering if there are any training initiatives going on with other teams around the country that you could learn from or is the development of these training materials something completely new?

    1. Thanks Fran. From my experience and speaking to paediatric surgical colleagues around the country, training of parents are usually quite limited and very much dependent on the community nurse contact with the family which can be variable in terms of experience. The issues encountered by the parents (and their response) are also varied as evident in our recent study based on NRLS data as well as comments made in the social media of a UK children tube feeding support group.

    2. Hi Fran,

      Good question. We know of some examples of good training for parents from the charity Well Child, and a team in Coventry who have a great training programme for healthcare professionals and paid carers working with children with medical complexity. Anna Burhouse suggested finding out more about a shared care project for haemodialysis which looks very helpful for us.

      Does anybody else know of relevant projects training patients and family members that we can learn from?

  24. Working to establish how best to train parents and other carers across multiple organisations who care for children with medical complexity is an extremely important piece of work which deserves to be recognised and supported. The most recent NHS strategy documents Five Year Forward View and LTP have all focused on the importance of self care and patient/public/carer involvement and this is a perfect example of encouraging co-production. .

    1. Thanks Douglas for your comments. I view the parents as part of the partnership in the care of the child.  The exchange of knowledge and experience between healthcare professionals and parents can help the parents who are experts of their child as well as the experts of the medical condition/technologies. We believe our work fit in line with the Long Term Plan in integrating care which the health service desperately needs.

    2. Thank you Douglas. Family-led care at home is certainly becoming a really important part of our health system. You and others might find this video of interest from the charity Well Child: It's a mother talking about caring for her child and all the different complex medical tasks they do.

  25. Dear team,

    What a wonderful idea! I can really see how this work has the potential to transform families’ lives. I wondered if you have you heard about the Health Foundation Scaling Up project SharedHD? Information about the team is available on their website and the team have a great presence on Twitter @sharemydialysis The team have learnt so much about shared care, co-production and training that I think might be relevant for you. They are a lovely brilliant team and are so very generous about sharing their experience and knowledge.

    Good luck with your bid.

    Best wishes


    1. Thanks Anna for your comments. The empowered self-dialysis movement originated in the city of Jonkoping by Christian Farman which has now spread around the global has certainly showed us self-care if well supported can lead to better outcomes. We hope this can extends to care of children by parents even with complex technologies at home.

    2. Thank you Anna. The Health Foundation Scaling Up project SharedHD looks very relevant and interesting. We will get in touch to find out more.

  26. This is such an important project - it empowers healthcare staff to enable parents to deliver safer care to their children. The challenges faced by families looking after children with complex needs at home are enormous and only set to increase; by upskilling them this project will help reduce their demands on NHS services while improving the safety of the care they are able to provide. It will also upskill the NHS staff whose role in delivering training to families is vital but often under resourced.

    1. Yes Geri, if the parents are enabled to deliver safe care with confidence at home, and local healthcare staff can deal with issues that do not need hospital care, then there will be fewer A&E visits and additional hospital admissions especially to the over-stretched tertiary children hospital centres.

  27. Guest

    This project is absolutely critical in today's healthcare culture.  As a close friend to  someone who cares for their child with muscular dystrophy - the place they want to all be is home but require the training and support to do so.  The simulation and training videos are both a visual and supportive way to train and engage parents enabling them to learn and express their concerns in a safe environment.

    1. I agree Katie. Hospital at Home will become increasingly important as part of integrated care and collaboration between health professionals in the community with hospital teams are important. Equally important for the parents/carers to feel confident as well as empowered to look after their child at home.

  28. Great idea to build on some of the work started in Oxford PSC - link attached for further information.

    1. Thanks Jo, we are using the experience and contacts we developed at the PSC to expand the work including this one to empower the parents and cares looking after these children with medical complexity.

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