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From children and young people - our Hospice Voice project

We wanted to get involved and make a difference

Twenty-two childrenÌýand young people with hospice care experience - whether on short breaks, as siblings of children and young people in end of life care or as friends of children and young people being supported by hospices - joined a five-month RCPCH &Us project to share their needs, wishes and hopes. Hospice staff created the opportunity for children and young people to feed back about their experiences and share what they thought about service level shaping decisions, enhancing their work around person-centred decision making.

Children and young people involved said they want to be able to:

• Have a place and time to work on ideas for visitors to the hospice, such as creating a games pack you pick up when you come in the hospice with puzzles and goodies
• Know more about what happens in the hospice, such the different coloured uniforms people wear and a map of the centre
• Give feedback on what they like in the hospice, what is really important to them and what is missing. This includes working as Young Inspectors and sharing their ideas with nurses, doctors and the staff in the hospice - for example, making the comments, compliments and complaints leaflet shorter and more child/youth friendly, keeping the colourful decoration on the walls...
• Share what they found out. They made a story book of their project to send to staff and created a project name and logo so that people knew about them and how to get involvedÌý

The hospice staff on this project learned about hospice care experiences through the eyes of children and young people in a different way. It wasn’t about their personal care experiences but about working collectively with children, young people and staff sharing learning and experiences through walk throughs of the hospice, doing joint sessions at weekend and seeing what was important to them.ÌýThey found out things that they had never noticed or seen before and learnt lots from fun activities and group work sessions.

In August 2021, , which apply to all child health settings. You can read these for other ideas about what children and young people, many with complex care needs have prioritised for services to focus on. Ìý

We helped to improve the hospice with all your suggestions

RCPCH &Us children and young people from our Hospice Voice project

It's all about the basics - a consultant's tips by video

Complex case management can be challenging, but once you boil it down to the basics, it becomes easier and very rewarding

Professor Steve Turner is a consultant paediatrician in general and respiratory paediatrics at Royal Aberdeen Children’s Hospital and is RCPCH Registrar. In this video he provides tips for trainees on getting to grips with complex care and why it is important.Ìý

AÌýnon-compliantÌýpatientÌý- case study

Training level:ÌýAll levelsÌý

Setting:ÌýOutpatientÌý

What prompted the change?ÌýÌýA trainee working in the endocrine team is asked to help develop a safety plan for a patient well known to the team. The young person has type 1 diabetes and ADHD. He resides in a youngÌýperson'sÌýunit but frequently absconds and uses drugs and alcohol. His compliance with his insulin regimen is very poor. This has resulted in multiple admissions and calls to the hospital.

What happened?ÌýThe trainee formulates a safety plan with the support of their consultant. This is then discussed in meetings with the team at the young person’s unit and with the young person’s family to ensure a consensus has been reached. The trainee is also invited to attend the young person’s child planning meeting to highlight the medical team’s concerns to their allocated social worker.

How did this support training and trainees?Ìý

• Demonstrates the influence of a young personÌýchild’s environmentÌýonÌýtheir health behaviours Ìý

• HighlightsÌýtheÌýneed toÌýrespectÌýa young person’sÌýright to make decisions about their own health where they have capacity to do so andÌýthe importance ofÌýdeveloping a realistic management plan around theirÌýdecisions.  Ìý

• Opportunity to develop skills in verbal and written communication with colleagues and receive feedback from different sectors Ìý

Any practical tips?ÌýWhen working in acute medicine and medical specialties, itÌýis easy to cover learning outcomes in the patient management domain. Complex cases involving different teams and sectors are often a gateway to more diverse aspects of care such as safeguarding, medico-legal considerations and patient safety.

A complex case provides learning opportunities at all training levelsÌý- case study

Training level:ÌýAll levelsÌý

Setting:ÌýInpatientÌý

What prompted the change?ÌýA child with a complex neurodisabilityÌýis admitted under general paediatrics with a chest infection. His parents are concerned about how often he has required admission to hospital recently. They are also concerned that they are much sleepier than normal since admission. He is onÌýa number ofÌýmedications and usually has input from multiple specialty teams. Ìý

What happened?ÌýThe ST6 registrar working on the ward spends time with both parents discussing their concerns and finding out what is normal for their son. He speaks to theÌýneurodisabilityÌýconsultant and emails the respiratory consultant who usually look after the patient. He asks physiotherapy to review the patient and discusses his medications with the pharmacist to work out why he might be so sleepy.

The patient's anticipatory care plan has not been updated recently so the registrar arranges a meeting between the consultants involved and the parents to discuss this. ÌýThe nursing staff raise concerns that the boy’s parents are rarely present on the ward. They have been heard arguing loudly several times. The GP confirms that they have not been collecting a repeat prescription for some of his tone medications.

With support from the registrar and consultant, the ST2 trainee gathers information and calls the hospital child protection team andÌýsocialÌýwork. She then writes up a chronology of recent events, presents this to the consultant and sits in on the initial multiagency meeting with healthcare, social work and police. Ìý

How did this support training and trainees?ÌýAt both junior and senior levels, this case provided opportunities to develop skills in communication, patient management, leadership and team working and safeguarding.

Any practical tips?ÌýFor trainers and consultants it is important to involve the whole team in complex cases as there are many useful learning opportunities for everyone involved.

Communication, communication, communication - case study

Training level:ÌýAll levels

Setting:ÌýNICU

What prompted the change?ÌýA preterm baby was born withÌýa genetic disorder that wasn’t known about antenatally.ÌýThere was multisystem involvement, including respiratory, GI, endocrine and neurology.ÌýÌýUnfortunately this diagnosis was associated with a poor prognosis.ÌýÌý

What happened?ÌýThe NICU team liaised with different subspecialty teams who needed to be involved in his care as well asÌýthe allied health teams. Multidisciplinary team meetings were also organised to aid transition to paediatricsÌýand facilitate discharge home. AÌýlead consultant wasÌýidentified who wouldÌýhave regular meetings with his parents to make sure they were up-to-date with plan of care and understood the prognosis.ÌýIn view of his poor prognosis, the team initiated anticipatory care planning with his parents as well.

How did this support training and trainees?ÌýFor junior trainees, it was a good opportunity to learn about various clinical problems and the management required.ÌýThe senior trainees found it helpful to be part of MDT discussions, which helped develop communication and leadership skills. There were useful opportunities to shadow senior clinicians when they went to speak to parents and particularly when difficult conversations needed to happen.Ìý

Any practical tips?ÌýBe involved in multidisciplinary discussions and discharge planning meetings if you are able to. Working with other specialties and the allied health professionals helpsÌýdevelop a more holistic approach.

A training presentation

Dr Cesca Ritchie has created a presentation you can use in your teams, aimed at trainers and trainees, to provide guidance on how to make the most of complex cases.

Download presentation in PowerPoint or PDF at bottom of this page

Dr Cesca Ritchie is an ST6 general paedatrician at the Royal Hospital for Sick Children in South East Scotland and Dr Cameron Herbert is an ST6 at the Paediatric Neurology Royal Hospital for Children in Glasgow with a special interest in Epilepsy. Cesca and Cameron were helped in putting together all this information by Dr Sue Lim, an ST8 in Neonates and Dr Sin Chin Tan an ST2 in Neonates, both based in the East of Scotland.

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