Supporting the

Neuroendocrine Cancer Community

Launch of Rareminds Wellbeing Hub and Rare Minds Matter Survey Results

May 17, 2024

Launch of Rareminds Wellbeing Hub and Release of “Rare Minds Matter – Rare Disease and Mental Health 2023 Survey Results”

We are thrilled to announce the launch of the Rareminds Wellbeing Hub, a vital resource designed to help individuals navigate some of the more common emotional challenges often shared across rare conditions.

Being diagnosed with, living with, or caring for someone with a rare condition creates many psychological challenges. It impacts your sense of self, your relationships, and how to live as well as possible with your particular condition. The future may look different than you had imagined, and there can be times when life feels stressful, uncertain, or lonely. It is very normal and understandable for difficult thoughts and feelings to emerge during these times.

Whether you have been living with your condition for some time or are currently facing a particularly emotionally challenging period, we hope you find valuable support and guidance in our Wellbeing Hub.

Access the Wellbeing Hub at www.rareminds.org.uk/wellbeing-hub.

Additionally, we are pleased to share the “Rare Minds Matter – Rare Disease and Mental Health 2023 Survey Results” report. This comprehensive report provides valuable insights into the mental health challenges faced by those with rare diseases. Key findings and recommendations from the survey include:

  • Living with a rare condition creates additional and particular challenges for mental health & wellbeing.
  • Rare conditions can affect the protective function usually played by family and couple relationships to support mental health & wellbeing.
  • Relationships and interactions with healthcare professionals have a significant impact on the mental health & wellbeing of people affected by rare conditions.
  • Mental health support is desirable, but accessing appropriate services is not always easy.
  • The level of mental health support provided by rare condition group leaders can impact their own mental health & wellbeing.

 

Recommendations:

  • A holistic, integrated approach to the care of people impacted by rare conditions that includes consideration of mental and emotional wellbeing is essential.
  • Individuals, couples, and families need support to help manage the impact of rare conditions on the dynamics of personal relationships.
  • Anyone impacted by a rare condition should receive psychologically-informed ‘rare aware’ care from the healthcare professionals they encounter.
  • Training is required for the existing mental health workforce on the impact of rare conditions on mental health and wellbeing.
  • Lived experience and third sector support for mental health & wellbeing should not be seen as a replacement for statutory provision.
  • Ongoing support and training for rare leaders and peer-to-peer supporters is needed to safeguard their mental wellbeing.

 

We extend our heartfelt gratitude to everyone who participated in the Rareminds survey. Your input is invaluable in helping us understand and address the unique challenges faced by those with rare diseases.

For more detailed information, you can read the full report here.

Stay tuned for further updates and detailed information on the report and its implications for our community.