Alison is a member of our Patient Panel. This group helps to represent your voices as patients to the medical professionals we work closely with. By being involved in our Patient Panel, Alison had the opportunity to represent patients on some new guidelines about patient care during and immediately after thyroid surgery. Alison explains more:

“Being an advocate helps ensure a cohesive and holistic approach and that the ‘human’ perspective is communicated throughout too”

What motivated you to become involved in the guidelines?

Unusually, I have experience of two total thyroidectomies – my then 12 year old daughter’s and mine a year later. One of the reasons for becoming involved in the guidelines group was to ensure medics realise that the patient lying in the hospital bed is more than that; they are the human being which surrounds the thyroid gland that has been or is being removed.

What did your work involve?

Attending Zoom meetings and participating in the discussions. There was occasionally some ‘homework’ to do between the meetings to prioritise what to include in the guidelines.  

How were you able to contribute to the group?

In addition to the main guidelines’ meetings, there was an extra meeting including one of the anaesthetists, one of the surgeons and me to put forward a protocol for both pre- and post- operative communication with patients, particularly if there is a post-operative complication. I also participated in the clinician’s webinar, offering a patient’s perspective.

What improvements do you hope this will lead to for patients?

I hope that by having patient representatives on an multidisiplinary guidelines group, the result will be all-inclusive; leading to good outcomes for both patients and medical staff alike. I also hope patients will gain an extra level of reassurance that ‘we’re all in this together’ whilst medical staff will understand how stressful being an in-patient can be.  

How has being involved in this work helped you personally?

I am enjoying being on the BTF’s Patient Panel, because it has helped increase the breadth of my knowledge about living with a thyroid condition. 

What would you say to anyone thinking about getting involved in the BTF Patient Panel?  

Being an advocate helps ensure a cohesive and holistic approach and that the ‘human’ perspective is communicated and remembered throughout too.

If you would like to provide valuable patient feedback on research trials, committees, reports and BTF patient literature, we would welcome you to join our Patient Panel. Please email [email protected] for more information.  

Read more about our Patient Panel