Better Together for Healthy Bone Marrow

how emotional wellbeing support can help you

Living with a rare condition, or supporting someone who is, will impact how someone thinks, feels and acts. In addition to the medical needs and consequences for the patient, the emotional and psychological burden brought about by any disease, and especially one which is rare, can have a significant impact on a person’s life.

 

Our charities worked together to survey our collective communities, and published a ‘Rare Voices’ report. Our survey found that:
In support of our communities, and with help from funding from The National Lottery Community Fund, our charities are able to provide a wealth of emotional wellbeing provisions including webinars and courses.
 
Emotional wellbeing support can help people to:
  • Adjust to, and cope with, the emotional impact and stresses that can occur with a medical condition;   
  • Cope with a sense that the future is uncertain;  
  • Cope with how illness affects relationships;  
  • Manage the demands of home and family life while caring for yourself/loved one;   
  • Cope with adjustment, change, loss;  
  • Cope with symptoms or treatment side-effects such as pain, fatigue, brain-fog.  

What are people saying about the support they have received?




“I gained a lot from the courses, especially from the Mindfulness course – just learning about the emotional side, breathing techniques, how to refocus yourself. I had a lot of panic attacks so I found it really helpful to get through a panic attack.”
Course attendee

“Throughout your life you take so much for granted, but mindfulness really makes you appreciate every hour every day. … I don’t have any medication to support my mental condition, it’s all been supported by meditation … Actually understanding how your brain works and why you think in certain ways and what you can do to address that is so powerful.”
Course attendee

“Made me stop, think and question things. Gave me time each week just to think and re-evaluate. Reminded me of things that I’d forgotten about, reminded me about what is important to me and how I have moved away from things that actually are essential to being ‘me’”

Should you require more immediate support, please do not hesitate to contact your GP or out of hours support if necessary. In an emergency, please call 999.

There are also a number of national services supporting people in a crisis, such as:
the Samaritans https://www.samaritans.org/ (phone 116 123)
https://www.giveusashout.org/ (text ‘SHOUT’ to 85258).

For more information, visit:
https://www.mind.org.uk/information-support/guides-to-support-and-services/crisis-services/getting-help-in-a-crisis/
or
https://www.nhs.uk/mental-health/feelings-symptoms-behaviours/behaviours/help-for-suicidal-thoughts/

For more general advice on finding the words to talk to your GP about your mental health, visit: https://www.mind.org.uk/findthewords See also: https://www.nhs.uk/mental-health/


Confidentiality and your personal information

The Emotional Wellbeing Team adhere to professional codes of conduct stipulated by the Health and Care Professions Council (HCPC). All information is held securely and confidentially by the Emotional Wellbeing Team. That means we will not share it with anyone else unless you ask us to on your behalf, and only after agreeing with you first what to share. However, there are some limits to confidentiality: 

  • if you give information to suggest that you or someone else is at risk of harm. In these circumstances, the Psychologist may be obliged to break the bounds of confidentiality to pass on information to a third party (e.g., GP or emergency services). This would be discussed with you first wherever possible; 
  • if ordered to do so by a court or the police; 
  • the Psychologist may discuss their work within clinical supervision, which is a professional requirement in order to maintain registration to practice and to ensure the quality of service provided. Whatever is shared in clinical supervision is also held within the bounds of confidentiality. 

If you ask for any written information to be passed on to a third party on your behalf, we will need your permission in writing to do this. 

For information on how your data are used and stored, you can view the Privacy Policy here.

Feedback and complaints

We really value your feedback to help us learn how to improve as a service. If you have any concerns or complaints about the service you receive from the Psychologist, we encourage you to discuss those with them directly in the first instance. You may also contact the Better Together Project Manager, Claire Baggott cbaggott@theaat.org.uk.

 

 

This project is supported by The National Lottery Community Fund – thanks to players of The National Lottery.