Posted on: 10 June 2020

To mark Carers Week 2020, we asked carers what key messages they’d like staff to know.  This is what they told us:

I would like staff to:

  1. Know that it is difficult for us to leave our loved ones in hospital when visiting has finished, especially if we live with our cared for person and are used to being with them 24/7. Often we go home and cry. When staff provide reassurance and are available to answer questions and concerns, this makes all the difference.
  2. Realise that caring is a lonely job. Caring is all consuming and we often feel forgotten, anxious and unloved. We are people with our own lives too, and to know who we can contact to be able to speak to staff about our concerns and feelings helps us feel less alone and more supported. 
  3. Know that in many cases, carers are hidden or invisible. It really helps when staff identify carers, hear their views and help them get the appropriate support. This is particularly true with young or young adult carers, who are often left unidentified and unsupported.
  4. Put themselves in my shoes and reflect on how it feels to be in such a vulnerable situation. I am already overwhelmed, so instead of telling me what I can or should do, I really appreciate it when someone listens, shows empathy and offers to help.
  5. Listen to my expertise and think of me as part of the team. As a carer, I can share useful information to help with diagnosis and treatment, identify early warning signs and help avoid unnecessary admissions to hospital.
  6. Understand confidentiality and know what information staff and families can share with each other. As carers we’re not always given enough information and this can feel isolating. Good communication makes all the difference.  
  7. Be mindful of the language they use, to not use acronyms and jargon and to consider how overwhelming this might be for the carer and patient.
  8. Understand that if I hear staff making a negative dismissive or judgmental comment about the person I care for, it hurts and angers me and is not acceptable.  
  9. Receive staff training in carer awareness and have support from their managers in dealing with potentially difficult family dynamics.
  10. Know that we appreciate staff and all that they do – we all want the best for our loved ones and to see staff treating patients with genuine compassion and care means everything. Thank you.     

Do these words strike a chord with you?  Do you work for CNWL and would you like to become a Carers Champion to help turn these thoughts in action? Email to find out more!