Transcribed

Service Users Mini-Series: Episode 4 - Acromegaly "A Label or a Key?"

Sep 3, 2024 · 1h 4m 7s
Service Users Mini-Series: Episode 4 - Acromegaly "A Label or a Key?"
Description

We speak to Carole Chance who has been a member of the Service Users Group (SUC’s) for over seven years and started out by interviewing candidates for the University. Carole...

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We speak to Carole Chance who has been a member of the Service Users Group (SUC’s) for over seven years and started out by interviewing candidates for the University. Carole speaks about the co-morbidities she has including Multiple Sclerosis (MS) and Acromegaly. She explains that a diagnosis can be a ‘key’ rather than a label and open doors to support and new experiences. 
 
Carole and I discuss how healthcare professionals can support service users, including how the use of jargon can be terrifying for people without any healthcare knowledge. We explore how the news of her diagnosis was given to her, and how this could have been improved, including the need for further support and knowledge. 

We are very grateful to Carole for sharing her story and lived experience!
 
Would Carole rather have eyes that bring up medical facts? Or fingers that can grow, snap off (and grow back) that contain quotes to say to students? 
 
Be sure to look out for our special LIVE guided meditation episodes coming out 17th September! 
 

Web links from the show:
 
Mindfulness therapy in acromegaly – Santos et al., 2023  
  • RCT with 60 participants   
  • Intervention group – followed a mindfulness based stress reduction program  
  • Control group – followed normal clinical routine  
  • Found reduced pain in the intervention group, improved sleep, improved self-compassion.  
  • Concluded that mindfulness could be valuable for patients with acromegaly  
What is it? – NHS 2024 

A rare condition where the body produces too much growth hormone. This causes body tissues and bones to grow more quickly. Diagnosis usually occurs in adults aged 30-50 and is usually caused by a non-cancerous tumour in the pituitary gland. 
 
Prevalence – Oluwaseun et al., 2023 

Worldwide prevalence of 4,600 per million, 40 per million in the UK 
 
Education for patients – Geer et al., 2022 
  • Assessed impact of virtual education programme 
  • Mixed methods – looking at attitudes towards diagnosis/condition 
  • Livestream of education by a full MDT of experts and patients 
  • Found that this can have a positive effect on perceptions of the disease.  
  • No hope for improvement and feeling of being alone both decreased 
Cycle of Grief – Kubler-Ross (1969)  
 
 
Wellbeing/Mental Health Support Contacts:
    
If you are a student or staff member at Staffordshire University and have been affected by any of the topics that have been discussed in this podcast, don’t struggle alone, Staffordshire University are here to help…
Contact Wellbeing Support on 01782 294976 or by emailing studentwellbeing@staffs.ac.uk.
  
For external listeners, mental health crisis lines and suicide prevention contacts can be found below. Please reach out if you feel you need to!
    
NHS Mental Health Services - https://www.nhs.uk/nhs-services/mental-health-services/where-to-get-urgent-help-for-mental-health/
  
Mind Support and Services - https://www.mind.org.uk/information-support/guides-to-support-and-services/seeking-help-for-a-mental-health-problem/where-to-start/
  
Samaritans Contact - https://www.samaritans.org/how-we-can-help/contact-samaritan/

  
Upcoming Podcasts:  

Death within other religions, Human factors and ergonomics, and a special Halloween episode!
    
Previous Podcasts:
 
Race, Transgender, Neurodiversity, Impacts of trauma, Mature student experiences, Transition from student to healthcare professional, and also specialised areas such as mental health and organ transplant teams.
  
Want to get involved?
  
Are you a student? Member of staff? A Healthcare worker?
 
Do you have a topic you would like to share?
 
Get in touch! Let’s Pod!
  
  
Contact The Link podcast team:
  
@TheLinkPodcast_ on X (formally Twitter)
   
Ben W-H - @benw_h on X  
     ben.woodrow-hirst@staffs.ac.uk
  
Kirsty Egan - @KirstyODP on X  
         kirsty.egan@student.staffs.ac.uk
  
  
Hosted by: Ben Woodrow-Hirst  
Produced & Edited by: Ben Woodrow-Hirst & Kirsty Egan  
Artwork: Shaun Kelly  
Theme Music: Gavin Samways 
 
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Author Ben Woodrow-Hirst
Organization Ben Woodrow-Hirst
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