We can treat your cancer, but eating may never be the same again…

Roganie Govender is a consultant speech and language therapist and CNMR post-doctoral research fellow at University College London Hospital. She is also an honorary senior research associate at the Research Department of Behavioural Science & Health, UCL. Her PhD research focused on the development and feasibility of a pre-treatment swallowing intervention package.  Roganie was funded by the National Institute for Health Research (NIHR) and Health Education England (HEE) through a personal doctoral fellowship award (CDRF 2013-04-020).  The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

As human beings, eating and drinking, like breathing, are simple gifts of life; we expect we will always be able to do them. We rarely, if ever, think what might happen if we could not eat and drink until we are faced with this threat to our health.  But even then help is at hand: it is usually possible to take some actions that can improve what may initially seem like the unimaginable situation of not being able to enjoy food and drink.

I have heard the phrase “never the same again” countless times in my job as a speech and language therapist working with people diagnosed with head and neck cancer. More recently, I have been thinking a great deal about how to help patients better understand and cope with difficulty in eating, drinking and swallowing, known medically as dysphagia, derived from the Greek phagein, meaning to consume, eat or destroy.

Those, like myself,  working with dysphagia on a daily basis, may also take certain things for granted, for example, expecting that our patients can easily follow our reasoning for doing tongue exercises or modifying the texture of their food. I have come to realize that all too often we assume that because we have provided patients with information about side effects, they have processed and understood this and will act upon it.  Receiving a cancer diagnosis creates unavoidable stress and anxiety that gets in the way of negotiating the barrage of information given to patients.  And this might be one of the barriers to patients sticking to their recommended swallowing exercises.

Formally researching patient experiences and perspectives has helped me see how I can improve the conversations I have with patients about their anticipated difficulties with dysphagia after treatment for head and neck cancer. These insights are part of a swallowing pre-habilitation intervention for patients treated for head and neck cancer, called SIP SMART.  I have investigated SIP SMART at my own hospital with good success.

I am now planning to do further research to explore the cost effectiveness of SIP SMART, and whether it would fit well in the NHS pathway of care for patients newly diagnosed with head and neck cancer. I will work with a team of people with relevant expertise to support this pilot multi-centre study. Part of this project will involve training other speech and language therapists in SIP SMART so that the essential and active components of the interventionare retained when delivered to patients by different clinicians in multiple hospital settings.  In this way, I hope we can help many patients with head and neck cancer to benefit from swallowing pre-habilitation.

This special guest blog is published to mark #swallowaware2019.

With around 3 million people at risk of malnutrition in the UK, UCLH is joining organisations nationally in promotional activities to raise awareness and promote good practice during Nutrition and Hydration Week which runs between Monday 11th March and Friday 15th March. Prevention, identification and treatment of malnutrition and dehydration improve health and well-being and help reduce the burden on health and social care services. Visit our information stands and speak to our Student and Dietitians at NHNN and in the UCH hospital atrium between 10 and 3pm on Wednesday 13th March. Find out more: https://nutritionandhydrationweek.co.uk/

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