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Case Study: Targeted Early Support for families with a child with complex health needs

11th October 2021

Case Study: Targeted Early Support for families with a child with complex health needs with aims for better outcomes and readiness to learn for school

Health visitors, through their specialist training in community public health nursing, provide an infrastructure of support for families through building trusting relationships to achieve positive outcomes. Health visitors can identify the health and wellbeing needs of babies, young children, and their families at a very early stage to ensure that the right support is put in place as early as possible. The evidence is clear that this is when it makes the biggest difference.

We are delighted to share a case study written by Sian MacLeod, who is a specialist health visitor for children with complex disabilities, working in Portsmouth City for Solent NHS Trust. Sian’s case study brings to life some of the struggles that families have when caring for a child with a complex disability and the vital role that health visitors have in building trusting relationships, assessing, planning and co-ordinating care as well as providing evidence-based interventions. Sian highlights how children with disabilities, like all children, have hopes and can achieve when the right support is in place. Parents, who were once told that their child may not speak, now have a child who is a complete chatterbox and is ready to start school and is ready to learn!

 

Description

(For the purpose of this case study the child’s name has been changed and will be called AB).

Public Health England (2021) identified health visitors as having significant roles as leaders of the Healthy Child Programme, emphasising their unique and important function as part of integrated multi-professional care pathways. This case study provides evidence of the important role of the health visitor in coordinating a needs-led approach for targeted early support for a child with a complex condition – through the process of diagnosis, Early Help Assessment, and the co-production of plans to support the child and their parents.

Little AB was born prematurely following a traumatic delivery. He spent several weeks in intensive care before being discharged home. It was not long before his parents noticed that he was not developing as expected – this was a worrying time for them and the eventual outcome was a diagnosis of 4 limb cerebral palsy and visual impairment.

From the start of his life, AB was reviewed, investigated, referred and supported by a vast number of services. These include hospital and community Paediatricians, Physiotherapists, Speech and Language Therapists, Occupational Therapists, Portage, Visual Impairment teachers and Visual Habilitation specialists. Alongside all the appointments, AB’s parents were devastated, confused and trying to come to terms with what future lay ahead for their son. AB’s parents were first-time parents, and they said the books they had read on parenting were not matching their experience.

 

Context – what was the aim?

When AB was diagnosed with cerebral palsy, he was transferred for additional support to the Specialist Health Visiting (SpHV) team who work closely with the community health teams. Through completing an Early Help Assessment, not only were AB’s needs identified but also the needs of his family. A plan for support was developed in partnership with his parents and this was reviewed through regular Team Around the Child (TAC) meetings which they welcomed as a means to bring professionals together and coordinate the best plan of care for AB. As AB grew, his team grew and the nursery also became part of the TAC process. We were AB’s team and everyone played their part. The Specialist Health Visitor led the TAC meetings, and the parents knew that the health visitor’s role was as the Lead Professional.

 

Method

Having a designated Lead Professional and the TAC model of care enabled the co-ordination of all the services by bringing them together in one place. Although each service had its own identified areas of expertise, they were able to strengthen the package of support by working together. This was evidenced by joint working between SpHV and the visual impairment teacher to assess AB’s sleep difficulties to make a holistic plan which incorporated additional strategies to support AB’s visual impairment. Not only were we able to explore and discuss sleep routines, but also suggest practical solutions to make his bedroom environment a place that AB could feel safe in and so settle. This was through using special lighting and other sensory interventions such as to scents. The SpHV was also able to work jointly with the OT to support AB move on from wearing nappies. This is such an important milestone for independence, and it can easily be overlooked, or unnecessarily delayed in children with complex conditions. AB was supported with a plan for supporting toilet training and specialist seating was arranged alongside a toileting plan. Joint working with the Speech Therapist allowed for reviewing AB’s feeding difficulties whilst monitoring his growth to ensure his feeding plan was safe to support healthy growth.

 

Outcomes    

By working as a team, the nursery was able to put in place recommendations from the therapists and the visual impairment teacher who visited the setting to ensure it was accessible for AB.

During the TACs, we were able to learn from each other and were all inspired by how the visual habilitation worker would teach AB how to map out space by using his other senses.

Through their strong and ongoing relationships with the health visitor and the TAC team members, AB’s parents were able to express their hopes and fears, and engage in an open discussion with the whole team. Both parents were also visited by the health visitor at home outside the TAC meetings. This provided opportunities for them to also focus on their own needs, by talking through their worries and about how AB’s condition had impacted them as parents. AB’s father changed his job to work from home, so AB’s mum could continue to go to work. This allowed for contact with AB’s father on his own. He was able to talk about how he had been very fearful of looking after his disabled son and had let his wife do most of the caring, but was feeling closer to his son now that he was caring for him more. It is important to make opportunities for fathers to have conversations about their feelings and fears, and to consider the impact of having a child with a disability on a father’s emotional wellbeing. Supporting parents to bond with their child is just as important for parents of disabled children, as it is for all parents – laying the foundation for sensitive caregiving and the formation of a secure attachment that shapes future health, wellbeing and development.

As AB got older, the team were able to prepare evidence early on for the Education Health Care Plan (EHCP) in order that the right provisions were in place for when AB transitioned to mainstream school this year. This case study example clearly demonstrates the importance of working in partnership with parents to co-produce plans of care and support. AB’s needs were kept at the centre of all decisions and his parents were involved through the whole process which was completed in the set 20 weeks.

 

Key Learning Points

AB has now been discharged from the SpHV services as he starts school. All support is in place through a robust EHCP. On the last visit, the EHA was closed. AB’s parents were able to reflect on the support they had received and what had been most useful. AB’s parents reported that they found having early support beneficial as they were first-time parents. They had initially felt unprepared as parents of a disabled child when their son had been born early. The SpHV was able to provide them with the reassurance and guidance that they needed; being part of their journey from the start, she was able to “fill in some of the gaps” they had. AB’s father felt the TACs were useful because “everyone was in the room” at the same time. This allowed for the sharing of information to different services as they found it hard initially, feeling like they were the “go-between”. One of the principles underpinning the SEND code of practice (2014) highlights the importance of the child or young person, and the child’s parents, participating as fully as possible in decisions and being provided with the information and support necessary to enable participation in those decisions.

It can be hard to quantitatively measure the impact of the support that was given to AB when using local Key Performance Indicators and routinely collected national outcome measures which only presents part of the story PHE (2021). However, when visiting the family to conclude the EHA, AB’s parents were able to share positive reflections about the difference that integrated support had meant to them personally. The ultimate question must always be, did it make a difference, did it give AB the best start in life?

The most positive outcome is that AB is now ready to start school and is “ready to learn” with additional support and provisions alongside his peers at mainstream school.

A key learning point is an importance of always making time to meet with parents, and not to overlook fathers. They need time to share their hopes and fears for their child especially when the child has a significant disability. Contact a Family (2017) emphasised the integral role of fathers in the family with a child with a disability but reported that many felt excluded from aspects of their child’s care. The health visitor is in a key position to make those opportunities for fathers and make every contact count.

Although the outcomes have been positive, there have been times when the family has found it a struggle and needed extra support to help them get back on track. For example, to access some additional community services or when they were told news that AB would never learn to talk, which they found devastating and needed time and support to the process. However, AB has demonstrated that children with disabilities, like all children, have hopes and can achieve with the right support in place – he proved this wrong and is a complete chatterbox. When a child has a disability, a parent’s grieving can be cyclically reactivated by triggers and events (Whittingham 2013). This cyclic grieving process has been termed Chronic Sorrow. Part of a child’s plan should always consider the impact of the child’s disability on the parents, and this was integral to AB’s Early Help Assessment plans.

Health visitors through their specialist training in community public health nursing are best placed to provide an infrastructure of support for collaborative work and integrated delivery, PHE (2021). Health visiting aims to identify the health and wellbeing needs of the baby, or young child and their family as early as possible to ensure that the right support is put in place as early as possible as the evidence is clear that this is when it makes the biggest difference This work supports the national policy ambitions set out by PHE (2021) that children are prepared and supported in the early years to enable them to be ready for school by the age of five.

 

References

Contact a Family (2017) Health Support Pack. CaF. Available from http://www.cafamily.org.uk/HealthSupportPack.pdf

Public Health England (2021) Best start in life and beyond: Improving public health outcomes for children, young people and families. Guidance to support commissioning of the Health Child Programme 0-19: Health Visiting and School Nursing services. PHE. Available from https://www.gov.uk/government/publications/commissioning-of-public-health-services-for-children/health-visiting-and-school-nursing-service-delivery-model

Public Health England (2021) Guidance, Health visiting and school nursing service delivery model. Better start in life and beyond. PHE. Available from https://www.gov.uk/government/publications/commissioning-of-public-health-services-for-children/health-visiting-and-school-nursing-service-delivery-model

Whittingham K, Wee D, Sanders MR and Boyd R (2013) Predictors of psychological adjustments, experienced parenting burden and chronic sorrow symptoms in parents of children with cerebral palsy. Child: Care, health and Development 39(3): 366-373


We would like to say a huge thank you to Sian for sharing her story which brilliantly articulates the vital role of the specialist community public health nurse in achieving positive outcomes for babies, children and families.

Investing in services that give children the best start in life reduces demands on GPs, hospitals and social care. It means children start school ready to learn and to achieve, so our schools can be more effective. Investing at the start of life gives our children the best chance of being safe, happy and healthy throughout their lifetime and into old age.

Calling all health visitors: We invite you to find your inner warrior and share your stories on social media. How have you made a difference to babies, children and families? Support the #TurnOffTheTaps campaign and raise the profile of health visiting so every baby can get the best start in life. Together we are stronger. #InvestInHealthVisiting

 

Find out more about the #TurnOffTheTaps campaign