Occupational therapy - a new approach to pituitary support

Sammy Harbut is a trained occupational therapist and works as a Patient and Family Services Co-ordinator for the Pituitary Foundation. She tells here how her groundbreaking work is developing new approaches to support pituitary patients. 

JR PF VTE 0290

The Pituitary Foundation’s mission statement states: ‘Every person affected by a pituitary condition has a timely diagnosis and access to the best treatment, information and support’.

Read more about who The Foundation are here

Living with a pituitary condition

This is an essential starting point for me as a therapist. I cannot influence diagnosis or medical treatment/surgery, but within my role I am helping to develop services which can provide information and support to the pituitary patient community.

It's also important to concentrate on my journey as a patient as I to explain the impact of pituitary conditions on the health and functioning of those diagnosed with pituitary disease.

As little is known about pituitary conditions amongst healthcare professionals generally, this provides a good opportunity to raise awareness and highlight the difficulty patients have returning to a life which has purpose and meaning following treatment.

Occupational therapy is increasingly important in our charity. My role involves facilitating and contributing to helpline services, providing contacts and information for researchers undertaking specific pituitary projects, and representing The Pituitary Foundation at external events.

But, importantly, I've also been able to introduce and expand the concept of occupational therapy to the patient community, who are now benefiting from this approach.

The success in these changes has led to an appointment as a Patient and Public Member to NHS England’s Clinical reference Group for Specialist Endocrine Conditions.

I also help the charity maintain international awareness by representing the Foundation at the World Association of Pituitary Organisations (WAPO).

Recently I have focussed on developing my interest in fatigue management - an issue for all pituitary patients.

This area of my work has been of huge interest, is well received, and continues to develop.

It has been widely presented at our National Conference, to Local Support Groups, and has been made available more widely in booklet form and via webinar.

Sharing our new work in these areas is invaluable; I was pleased recently to present this work to final year OT students at Liverpool University, led by Dr. Bethan Collins - senior lecturer and module leader. 

Sharing and promoting this work is an important part of helping establish patient led support at the heart of the pituitary community. 

I have ‘occupation’ (or activity) at the forefront of my mind when engaging with patients (be it by email, on the helpline or in person) as there is an underlying assumption in my profession that people are much healthier and happier when they can be active in their life roles.

This is not easy for pituitary patients, the majority of whose lives have been interrupted by their diagnosis and a deterioration in their health.

But understanding how occupational science concepts influence people’s lives, and applying occupational theory to their life stories enables me to understand how they can engage in a therapeutic relationship, however brief that might be.

As pituitary conditions often impose significant restrictions on a person’s ability to participate fully in life, it is necessary to work with some patients on accepting their new circumstances, and exploring with them how they can adapt to become active to a level which is acceptable to them.

Occupational Disruption, Transition and Deprivation impacts on patients’ lives.

By structuring interventions around theory, this guides our communication. This is at the forefront of my mind when establishing the importance of different activities for patients, and offering guidance and support whilst they explore possibilities and learn to live with their "new selves".

I am an occupational therapist in my heart, in my thinking and in the way I relate to the patient community and use my occupational therapy skills every day, either directly or indirectly.

Indeed, each patient’s occupational balance and ability to engage in meaningful occupation informs my thinking.

By engaging with the OT community through conferences, training and as a member of the Royal College of Occupational Therapists and the Independent Practitioners South West Group, I'm able to maintain my links to current practice.

Maintaining a record of my Continuous Professional Development (CPD) allows me to remain Health and Care Professions Council (HCPC) registered.

Such registration requires high standards of practice and maintenance of skills and knowledge, which I hope reassures The Pituitary Foundation that I am committed to providing the best service to our patient community at all times.