Papers: Services

Developing an integrated NHS therapy pathway for supporting babies and young children with Down Syndrome

Lauren Newman, Kate Marshall and Karen Fisher - Speech and Language Therapists, Barts Health NHS Trust.

lauren.newman3@nhs.net

Our presentation will discuss the process and outcomes of developing a new pathway for supporting the therapy needs for children with Down Syndrome who are under five years old and living in Tower Hamlets.

Initially, we conducted a scoping review which included a caseload audit and small-scale literature review of the current evidence base for Speech and Language Therapy for children with DS. We used the outcomes of this scoping review alongside our team's knowledge of what already helps to support children with complex needs to create a new pathway. Our pathway includes:

• Offering a Primary Service Provider (PSP) model of support to streamline the number of appointments and professionals involved where appropriate.
• Offering Routines Based Intervention to help families support their children in their everyday lives where appropriate.
• Offering a family support group for young children and their families - which also provides a platform for sharing key universal information with families.
• Creating universal resources and training to support families with young children with DS.
• Running training for other professionals around supporting children with DS.
• Planning regular meetings with other professionals to encourage earlier identification and more joint working.

In the future we hope to:

• Re-audit our caseload to compare outcomes following the implementation of the new pathway
• Gain feedback from service users to continue to develop and improve the service we offer.

Summary

• Our presentation discusses process and outcomes of developing a new pathway for supporting the therapy needs for children with Down Syndrome who are under five years old and living in Tower Hamlets.
• We conducted an initial scoping review (caseload audit, small scale literature review, feedback from professionals and parents) and used the outcomes to create our new pathway.
• Our new pathway comprises of six components: allocating a Primary Service Provider, using Routines Based Intervention, running a family support group, offering universal training and resources for families, offering training for other professionals, and planning regular multi-disciplinary team meetings.
• Following a 12-month pilot scheme, we hope to re-audit our caseload and gain feedback from families.

Speech and Language Therapy services for people with Down syndrome - the disparity between research and practice

Pauline Frizelle¹, Anna Ceroni¹, Lorna Bateman², Nicola Hart³

1. Department of Speech and Hearing Sciences, University College Cork, Republic of Ireland
2. Psychology Department, Cork North Lee, Health Services Executive, Republic of Ireland
3. Down syndrome Ireland, Dublin, Republic of Ireland

p.frizelle@ucc.ie

Background: The need for speech and language therapy (SLT), for people with Down syndrome (DS), is well documented. However, there is a significant disparity between research and practice. This study addresses two of the three pillars of evidence-based practice by 1) quantitatively profiling some key features of the 2019, public SLT service in Ireland, and referencing this against current best evidence; 2) asking parents, and adults with DS what supports they need in relation to an adequate SLT service.

Methods: Adults with DS (n = 33) and parents of those with DS (n = 557), completed an anonymous survey online. The function of the survey was to collect information on: SLT service provision; levels of satisfaction with services; and SLT supports required.

Results: Based on parent responses, only 44% of participants (n = 253) were offered public SLT services, in 2019. The mode waiting time was 1-2 years and the average number of sessions across the age groups, was 5 per year. There was a strong association between age and number of sessions. Individual therapy was the most common model of service. 40% of parents reported a 0 level of satisfaction. Seven key themes emerged from the qualitative support data. None of the participating adults received public SLT services in 2019.

Conclusion: Our aspiration for evidence-based SLT practice is far from being realized. The average number of sessions reported, does not in any way approximate the intervention intensity specified in evidence-based interventions. Our limited service, at all ages, has detrimental implications for people with DS and our negligible adult service is in breach of human rights. Targeted, strategic investment is needed to allow practice to be aligned with best evidence; to support and treat people with DS effectively; to allow them to reach their maximum potential; and to exercise their right to communicate.

Summary

• This study addresses two of the three pillars of evidence-based practice by
  • profiling some key features of the 2019, public SLT service in Ireland, and referencing this against current best evidence;
  • asking parents, and adults with DS what supports they need in relation to an adequate SLT service.
• 33 Adults with Down syndrome and 557 parents of people with Down syndrome responded to an online survey
• Parents reported that only 44% of participants were offered public SLT in 2019 and the average number of sessions across the age groups was 5 per year.
• Individual therapy was the most common model of service
• 40% of parents reported a 0 level of satisfaction with the service they received.
• Qualitative data on supports needed revealed seven key themes
• Our limited service, at all ages, has detrimental implications for people with Down syndrome and targeted, strategic investment is greatly needed to allow practice to be aligned with best evidence.

Down Syndrome CEN: Working to support children and adults who have Down syndrome

Rebecca Baxter, Down Syndrome CEN chair (LETS Go! UK, University College London)

dscen@letsgouk.org

The Royal College of Speech and Language Therapists (RCSLT) recognizes and supports Clinical Excellence Networks (CENs) to share information and developments within specialist areas. The Down Syndrome CEN has relaunched this year with the following aims and plans for future projects, linking research and practice:

• Bridge the gap between research evidence and the knowledge of speech and language therapists working with children and adults who have Down syndrome.
• To provide informed, professional guidance around the role of the SLT, content and type of intervention as well as frequency.
• Support and improve services for those who have Down syndrome through the provision of continual professional development and supervision/peer support for therapists.
• Participate in and evaluate research regarding speech, language, communication and feeding issues relating to people who have Down syndrome.

This short presentation provides an overview of the CEN and discusses the research possibilities within these services.