Head and Neck Network

Carlene Perris, Speech Language Therapist

Carlene Perris is one of the three speech language therapists working in ORL at Auckland Hospital. Esther and Jennifer are her two colleagues. Carlene outlined a research project she is currently involved in and a couple of opportunities for involvement in future projects.

Laryngectomy Study

Carlene pointed out that laryngectomees are a relatively small group with approximately 8 per year over the last decade here in Auckland. But they have unique needs.

What is the life experience of laryngectomees following treatment and how can their quality of life be improved? This is the topic for research being conducted by Carlene and a team from Auckland University.

The study has two parts:

• a retrospective audit of patient notes from 2005 - 2015 yielding 80 people. (This might not be an exhaustive list.).  This will look at information such as age at the time of surgery, length of stay in hospital post-op, number of readmissions, number of SLT appointments etc,
• semi-structured interviews with participants who have responded to an invitation. This will also involve completion of three questionnaires looking at different aspects of quality of life.  

The team consists of  Alana Brady, SLT Masters student, Dr Anna Miles from Auckland University, Carlene, Alan Spinks a patient advocate and Alex Smedley, a head and neck cancer SLT in Canterbury.

Dr Miles is the expert advisor for swallowing problems in New Zealand and is part of the faculty delivering the Master’s programme to train SLTs at Auckland University. While New Zealand has three speech language therapy learning centres, Auckland University’s course is slightly different. The Auckland SLT students are all completing a two year Masters programme after having graduated in another field, such as linguistics. Each student has to carry out a research project.

Dr Miles and her students are keen to be more involved with ORL, hence the collaboration taking place with this project.

It is not too late for laryngectomees treated in Auckland and Canterbury to get involved in this project.

Anna and Alana’s team want to explore the unmet needs of the laryngectomee population. Who are they? What are their experiences? How has the laryngectomy impacted on their communication, their eating and drinking? What can SLTs do better? What different equipment could be used? What information do they need and what further services could be offered?

Progress

• 80 Auckland electronic notes to audit
• 30 Canterbury notes to audit
• 10 Auckland participants for the interviews to date

The Auckland audit is nearly complete. The interview stage is about to commence. Alana has access to travel funds as well as Skype and the telephone.

In October, some preliminary data will be available for the ORL conference in Auckland. They are making a poster which they will bring to us later in the year.

Consistency across DHBs

The team wants to look at nationally funded products. Some DHBs fund certain devices and some do not. There should be a national standard of provision. Do they need to change their practice? Do they need to provide information in a different format? Can they use different stoma covers? How good is the access to follow up? Who should people contact if the valve is leaking? If they present to ED there should be a process in place to have them seen by the right person who understands the specific needs of someone who has had a laryngectomy. Carlene’s wish is for consistency across the DHBs.  Maureen

Consumer Engagement: a comment from Carlene

There are a couple of opportunities coming up to be more involved in the development of the SLT services.  At Auckland DHB we provide a regional, tertiary service which means that patients come to us for treatment from outside of the Auckland DHB catchment area and go back to their local DHB once treatment is complete.  We are currently working on getting together the SLTs across the region (Northland, Waitemata, Auckland, and Counties Manukau) to look at what services are offered to patients with head and neck cancer and address any gaps in those services.  We want to consider where is the best place for people to be seen and who are the best people to provide those services.  Members of the group can contribute indirectly by sharing with us their own positive or negative experiences of accessing SLT services in Auckland or in the greater region.  You are also welcome to be involved more directly by attending the meeting we are planning in September to discuss services as a group.

We are also planning a national study day on head and neck cancer for February next year.  I would love to have some volunteers from the support group who would be willing to talk at this study day.  It can simply sharing your story first hand or providing us some insight into observations you have made on how your care was delivered and how it could have been a better experience.  The audience would be SLTs from around the country who are already working with head and neck cancer and want to extend their skills or are new to the area and want some education in this topic.  So anyone who has had experience of communication or swallowing difficulties as a result of head and neck cancer would be suitable.  Carlene