Working in end-of-life care with a hidden disability

How Melanie draws on her strengths to care for others

In a world where disabilities often remain unseen, Melanie Antill’s journey with cone dystrophy reflects the difficulties faced by those with hidden disabilities. As a healthcare assistant in Rowcroft Hospice’s Inpatient Unit, Melanie faces the challenges of partial sight, colour blindness and light sensitivity. But in no way does she let her hidden disability stand in the way of caring for our patients and their loved ones. While her two years at Rowcroft have at times been challenging, Melanie says that it has also been “a wonderful personal journey” and that she has learned her greatest lesson: that anyone with any ability can make a difference.

Growing up with a disability

“I was diagnosed with cone dystrophy at around thirteen, although I have always struggled with my sight,” says Melanie. “Growing up with a disability that was not obvious to others was difficult as it meant I had to remind people or inform them that I struggled to see – not ideal for a teenager who did not like drawing attention to the fact she was in any way different to others. I spent most of my teenage years and even my twenties trying to hide my disability as I felt inadequate and inferior to others. I can recall one incident at around the age of fifteen when a teacher shouted that I was stupid because I was unable to identify a flower that she had drawn on the whiteboard in a light green pen – it was a drawing that I was unable to see. The whole class laughed at me. I realise now I was not stupid, but at the time I did feel stupid for not being able to see; I also felt stupid for not being able to stand up and tell the teacher I could not see. While my flower knowledge remained intact, my confidence did not. In the jobs that followed through my school leaver days and into my twenties, I would not disclose my condition for fear of rejection.”

A passion for supporting others

“My interest in end-of-life care started around seven years ago in the first care home I worked in. I had no experience in care and had only been there six months. I was on a night shift and a resident aged 94 had passed away, but this was not expected. There was no senior or experienced member of staff in the building, and it was guess work on what the next steps were and who to call. If there had been signs that she was going to pass, we were not trained to spot them. I had no experience of death up until this point and I found this quite traumatic. It raised many questions for me. I went on to have two more care jobs after this and witnessed more end of life. And again, I always felt I never got a full picture due to shift patterns or other professionals taking over. I decided that if a job became available at Rowcroft I would apply. This thought was strengthened when I worked in the community and Rowcroft’s Hospice at Home Team came to assist with a client. A few months later I applied to Rowcroft and was offered a position of healthcare assistant in the Inpatient Unit.”

Gaining confidence at Rowcroft

“My mum had brought me a nurse’s watch and it was engraved on the back with my children’s names (William, Annalise and Thea). I felt so much pride in myself as I pinned it on my uniform for the first time. I had no idea what to expect on the Rowcroft ward, but I had made it this far so was not going to turn back! I sat through my first handover understanding less than a handful of words and wondering if it would be my confidence, my eyesight or my lack of clinical knowledge that would be my biggest problem. I felt like a fish out of water for weeks; there was so much to learn and so much information to take in. Everybody was so patient with me, but I was overwhelmed and too scared to do anything for fear of getting it wrong for the patients and people I worked with.
“Then one day it all changed when I started noticing the positive feedback, the words of ‘well done’. The first time was when a nurse told me a family was thankful I had made their teas with a cup and saucer, as this is how their relative had always drank hers. I realised I had not just made a family a cup of tea, I had also made a slight difference in their day. After time spent worrying that I was out of my depth, I went home feeling I had done a decent job.”

Embracing strengths

“After this I noticed any positive feedback I received on how I had interacted with patients and their families. It did not seem to matter how quickly I was able to write my notes or how long it took for my eyes to adjust in different rooms. I started to feel more confident in my abilities and strengths.

“I know there will always be struggles for me, whether that’s with my eyesight, my confidence or anxiety but I am realising that these struggles have given me the ability to have patience and empathy for others. I love the quote from Brené Brown, the world-famous researcher and storyteller who’s spent decades studying courage, vulnerability, shame and empathy:

‘Empathy is a choice and it’s a vulnerable choice because If I were to choose to connect with you through empathy, I would have to connect something in myself that knows that feeling.’

“The struggles I thought would stop me doing my job are now becoming my biggest asset,” continues Melanie. “There are parts of my job I will always struggle with or not be able to do due to my impaired vision, but I am finding myself being more open within my team and I do feel supported to do so. Do I trust myself to read an accurate urine test? Definitely not! I cannot tell blue from purple from green, but can I hold the hand and listen to someone who fears what is to come and feel empathy for them? Absolutely! Treating someone with dignity, patience and kindness is a skill that is priceless, especially at end of life. Anybody with any ability can make a difference. This has been my greatest lesson at Rowcroft.”

An end-of-life care ambassador

Melanie is one of Rowcroft’s passionate end-of-life care ambassadors. The ambassadors course gives people the chance to influence and change workplaces for the better both for staff patients and families. Whilst on the course, Melanie realised that she wanted to find ways to encourage other people to consider working in palliative care by drawing on her personal experiences of hidden disability to raise awareness and understanding. Her course project enabled her to share her story in which Melanie encourages everyone at Rowcroft and beyond to recognise the challenges people with disabilities face and to offer the support they need. Her efforts help to make Rowcroft a place where everyone feels valued and understood.

If you work in health or social care in South Devon, and feel inspired to improve end-of-life care, you can find out more about Rowcroft’s end-of-life care ambassadors here.

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