Limbs 4 Kids was privileged to speak with members of the Limb Clinic at the Sydney Children’s Hospital, Randwick; a clinic that works with children and families prior to the birth of a baby and right through to 18 years of age. Limb Clinic members were able to talk about their roles, goals, ways they work with families and thoughts about developments in the field of limb difference.
Interviewed members of the Limb Clinic were Dr Adrienne Epps (Paediatric Rehabilitation Specialist), Margaret Patterson (Physiotherapist), Laura Sidharta (Social Worker) and Leslie Wollin (Occupational Therapist and Limb Clinic Coordinator). Unfortunately other integral members of the team – their specialist Paediatric Orthopaedic Surgeon, Geneticist and Plastic Surgeon – were not available to take part in the interview.
In the context of children with limb difference please explain what each of your roles are?
The Limb Clinic is comprised of a collaborative group, with each holding a specific role that relates to their area of specialty. The following summarises the roles of each member who took part in this article. The Limb Clinic is held every two weeks, and members of the team identified as required for the assessment and review meet with attending families and children.
Dr Adrienne Epps is a specialist with a particular focus on childhood limb difference and the functional implications for each child. In her role, Dr Epps conducts an overall assessment of a child’s condition and function as well as an overall assessment of a child’s family and their needs. Dr Epps is the manager of the Limb Clinic and works with all members of the team to develop a Management Plan for each child. Dr Epps’ responsibility is to assist children with limb difference to achieve functional goals and ensure they are supported by the Limb Clinic team throughout their childhood. Dr Epps, and members of her team, also work together to identify and support children to be fitted with appropriate prostheses and assistive devices that enhance children with limb difference to become confident, active and participating members of the community.
Margaret is the Limb Clinic’s Physiotherapist who assesses each child’s mobility and motor skills, developing exercise plans that assist children with their gait and body movement training. Margaret provides families with information about what to expect during key physical development milestones and assure parents that their child will develop to their potential. Other roles include pre amputation assessment, exercise prescription and counselling, post amputation follow up, rehabilitation and prosthetic gait training. Margaret also assists in identifying local Physiotherapists and Prosthetists to work with children, particularly if the family comes from regional or remote areas.
Laura is the Limb Clinic’s Social Worker, providing emotional and practical support to children and their families. Laura provides counselling to families in the adjustment of the child’s limb difference and assists them to better understand what support is available to them whilst in hospital and upon return to their home communities. Assistance includes specific support during key transition points (such as starting school), the preparation of government and school forms, and guidance should specific issues emerge (such as body image, self-esteem).
Leslie is not only the Occupational Therapist but is now also the Limb Clinic Coordinator. As an Occupational Therapist, Leslie assists children to maximise their abilities and learn to undertake everyday activities at home, at school and in the community. In addition, Leslie also assesses and supports the prescribing of upper limb prosthetic equipment and assistive devices that facilitate a child’s participation in everyday life. Leslie also liaises with schools and community organisations so that these can best understand a child’s needs and, where required, how the setting can be modified to accommodate a child with limb difference. The Limb Clinic Coordinator role is a new one within the hospital with Leslie the first person to hold this important role. As the Coordinator, Leslie assists families to understand what the Limb Clinic does, triages new referrals and ensures children and families are able to see necessary medical and allied health specialists within the service. As the role develops, it is hoped that the co-ordinator role will provide a link between hospital services and community organisations and supports the development of clinical services to support children with a limb difference and their families.
Can you explain what a ‘multi-disciplinary’ approach to health care means and why it is so valuable and important for children and young people with limb differences?
The Limb Clinic is underpinned by a multi-disciplinary approach; a methodology which combines a number of factors. Multi-disciplinary means bringing together different disciplines and health professionals with different areas of expertise to assess the child and together make recommendations for the management of the child. It means that the professionals can assess and discuss a child’s condition in clinic together to address the comprehensive needs of the child so they don’t have to go to different professionals and appointments. It makes it easier for the child and family by reducing the number of appointments on different days and helps communication with members of the treating team.
What does ‘early intervention’ support mean and why is it so important for children and young people with limb differences?
Early intervention incorporates a number of approaches underpinned by an overarching goal “that all children reach their full potential”. Dr Epps sees early intervention as an approach that incorporates putting the necessary physical, psychological and social supports in place, and providing families with diagnostic information and plans early in the child’s and family journey. Dr Epps views early intervention as a way of also ensuring that families receive the correct information as soon as possible, thus minimising the possibility of families receiving incorrect information, for example from the internet. Early intervention allows experts within the Limb Clinic to provide a common message to families that “their child is going to be OK and that, by working with you and your child, we expect full participation in life and the community”. Early intervention also enables the team to identify any issues that may be holding a child back from reaching their full potential and intervene to minimise or mitigate the issues. In addition, early intervention includes connecting families with one another so that they know they are not alone.
A patient-led approach doesn’t just involve the children and their parents, but also their family members. Can you explain how you work with siblings and extended family members?
Members of the Limb Clinic consider siblings and extended family members to be important members of a child’s life. Having other members of the family attend Limb Clinic meetings allows for those individuals to ask questions, better understand limb difference and identify ways they can assist the child. As part of a child’s Management Plan, members of the Limb Clinic team also identify if siblings need specific assistance or if they can be incorporated into the overall plan. The Limb Clinic noted that older siblings sometimes need assistance, particularly in the areas of better understanding their brother or sister’s limb difference or needing specific counselling. In addition, the Limb Clinic supports siblings to develop scripts they can use when speaking to others about their brother or sister’s limb difference; something that they have found can reduce sibling anxiety. The team have also found that including siblings in therapy can be extremely beneficial, as siblings learn how to engage with their brother or sister when playing sports or games and normalising the limb difference in their family.
Why did each of you choose to work with children and young people with limb differences?
Dr Epps chose to work in this field as it is a medical area that provides great job satisfaction, allows for cross-disciplinary collaboration, enables her to see the continuing progress and development of a child over time and celebrate their achievements. Margaret enjoys working with her colleagues and learning from their various expertise while also being able to support inspiring children and families. Laura appreciates the opportunity to assist children and families to access support both inside and outside of the hospital, and provide ongoing practical and emotional support while a child moves through key childhood milestones. Leslie fell in love with it as an area where she could support families and children to achieve all they can do and work in a field experiencing advancements in technology and componentry.
How do you assist children who experience ‘fears or worries’ during appointments?
Fortunately, the Limb Clinic doesn’t tend to see many children going through negative experiences during appointments. Where a child does have any concerns, the team talk to parents prior to the appointment to better understand the underlying issue and identify ways the issue can be addressed prior to and during the visit. For example, a child might be scared about coming to the hospital because it represents where they had previous surgeries or interventions; in which case the team works with the family to reduce associated fears. Sometimes a child may feel worried because of the number of Limb Clinic staff in a meeting, in which case they try to reduce the number of staff to a minimum. The provision of toys and fun activities is also a good way of distracting children, particularly if they are very young. The team also encourage each child to take an active role in the discussion.
Do you offer peer support to families just commencing on the limb difference journey?
The Limb Clinic consider themselves very fortunate as they have many parents of children with limb difference willing to speak to and support other families. The team views peer support as a great way for families to share experiences, provide tips and encourage each other. Sometimes the team will contact ‘experienced’ families and ask them to speak to another family, while at other times it occurs because a families informally meet in the waiting area. The team also refer families to Limbs 4 Kids and Aussie Hands on a regular basis. The team also wanted to thank two young people with limb difference, and their families, who have provided significant support to families and Limb Clinic staff over many years. Sarah Walsh, who was born with a congenital leg difference, and her mum Patricia have provided enormous support to other families over many years and are called upon by the team on a regular basis. The team also expressed gratitude to Jake Widjaya, who was born with a hand difference, and his parents for the role Jake has played in promoting the Limb Clinic and sharing his story with other young people and their families as well as in his Conference participation that assists with the professional development of staff and colleagues. It is worth noting that Limbs 4 Life has had wonderful support from both of these young people and their families also.
Are there developments in the field of childhood limb difference, prosthetics or other areas that excite and interest you?
The Limb Clinic team members expressed excitement in a wide array of areas, ranging from research through to componentry, feeling that these areas can enhance children’s ability to reach their full potential. Dr Epps advised that the team is working with the NSW prosthetic funding body, ‘Enable’, via robust research that will hopefully lead to the provision of high performance prosthetic feet for children. Leslie is excited by myoelectric prostheses for children with upper limb differences as she has seen the positive outcomes it has for children, but as these are quite expensive she is hoping to see government funding make these prostheses more widely available. Margaret has witnessed the positive outcomes that micro-processor knees have for young people with above-knee limb differences, and hopes to see funding increase so that all suitable children have access to this componentry.
Is there any critical information or advice that you give to all children and young people living with limb difference and their families?
Most importantly the Limb Clinic team advises parents to take a positive approach, to normalise expectations as much as possible and encourage their child with a limb difference to participate in all the usual everyday activities and things that interest them and to achieve whatever goals they set for themselves but it might just be in a different way to other children. The team recommends that parents don’t restrict their child’s life and allow them to participate in as many opportunities and activities as is possible. Finally, they want to remind parents that Limb Clinic members are available to talk with families any time, as the team is on the same journey with each child and family.
Do you think the Limbs 4 Kids program and resources are beneficial?
The Limb Clinic team said they have confidence in the Limbs 4 Kids resources, and frequently share them with families. The team feel that the resources are well structured, flow well and of great benefit to families and community members. The team said that parents are often provided with a significant amount of information during a Limb Clinic appointment, and the provision of Limbs 4 Kids Fact Sheets, magazines and website allow for parents to digest information in their own time.
After working with children (and their families) over a significant period of time, how does it feel when they reach adulthood and you will no longer be working with them?
While saddened when a young person reaches 18 years of age and it is time for them to move into adult services, the Limb Clinic team are also pleased because they are there to see their transition to adulthood. The team also felt it is a rewarding and humbling experience, as it means they have played a part in assisting young people to develop independent skills and confidence which prepares them for adult limb difference services. The Sydney Children’s Hospital, Randwick also holds a bi-annual ‘Graduation Ceremony’ for young people who have been part of their services over the years. The Graduation Ceremony provides a chance for patients and families to say goodbye to teams of clinicians who have cared for them for so long, many since birth, and provides staff the opportunity to formally farewell young people, wish them well and celebrate their successes. The Limb Clinic staff said that some young people stay in touch, but it tends to diminish over time which is a positive reflection that the young person has developed independence and is no longer dependent on the hospital.
Do you have any final comments related to working with children?
The Limb Clinic team all agreed that a very refreshing and enjoyable aspect of their job is how honest and funny children can be. They also agreed that they feel privileged to see children’s personalities grow over the years, achieve personal goals and watch them mature into independent young adults.
Limbs 4 Life would like to thank the members of the Limb Clinic at the Sydney Children’s Hospital, Randwick for taking the time to be interviewed. In addition, Limbs 4 Life would like to congratulate and thank the team for the wonderful work they do in supporting children with limb differences and their families.