Throughout the COVID pandemic something that has truly tested our Hospice is how we deliver care to our Day Care Unit patients who have been staying at home and unable to come in as they usually do.
R is one such patient who had to shield at home. Having come to the UK from Africa back in 1998, R has been part of our Hospice since 2009 and knows how important the support and palliative care we offer is. Here, she tells us her amazing story and how our Hospice has been supporting her, and continues to do so.
I was diagnosed with HIV in 2001. At the time I felt like I was dying. I was very sick. The medication was not what it is now so it caused me to have a lot of side effects impacting my nerves and my feet, causing me a great deal of pain and immobility.
I was being looked after by a nurse who referred me to St. John’s Hospice in 2009. I thought a Hospice was where you go to die, so I was very reluctant to go but I was too ill to say ‘no’. The Hospice started to help me manage my pain through their amazing palliative care. They also gave me access to complementary therapies like acupuncture. In particular, reflexology was a huge help to me. When I first came to the Hospice Day Care Unit I was very quiet, but slowly I began to join in with the other patients. St. John’s Hospice saved me at a time when I had given up on life.
Over the years I have made many friends at the Hospice who have all helped me grow in confidence, while the staff encouraged me to get involved – but always on my terms. It meant I was able to gradually find the confidence to take part in things. There is a lot of stigma around my disease in my culture, so I was always very scared to tell people about it. But I never felt that at the Hospice because everyone was so open; the patients, the staff, we all form such close connections because of what we are all going through. I even managed to find a friend from the same country as me which meant the world. St. John’s Hospice became my second home.
Because of lockdown during the COVID pandemic, my illness meant I had to shield. The Hospice supported me so much during this time. They would send us things to keep us busy and stimulated. They sent us painting and yoga equipment, and we were still able to have yoga classes through the Hospice over Zoom. They made sure we had all the right equipment like flexi bars and weights so we were still able to do the classes as we would have been doing at the Hospice itself.
They were determined to still deliver the best care they could. It was about keeping our minds and bodies busy, which is so important when you’re isolating. They offered to help me with shopping because I am shielding, although I didn’t need that because I am prioritised for deliveries – but it was lovely of them to offer.
Over Christmas they sent us all sorts of gifts and things to keep our spirits up, and the local school children sent us all sorts of lovely presents as well. They managed to do it even during lockdown, which was amazing. Getting these presents makes such a difference when you live alone.
I’m also part of the Hospice’s befriender scheme so I talk to my befriender regularly. It has helped me so much; she has been setting me little goals and motivating me to try new things during lockdown. It’s made me want to do things for her and in turn it’s benefiting me. She’s been amazing at giving me something to focus on.
I am in the Hospice reading group, which is fantastic, and we’ve been doing it over WhatsApp where we discuss what we’re reading. It keeps us busy and stimulates our mind. It’s very empowering, the more you do it the more you learn to express your thoughts on the topic. When your mind is so linked to your physical illness and pain it’s important to have things to focus on, so the Reading Group has really allowed me to do that.
Something that has meant so much is that Peter Hume from the Hospice has been calling me all the time during lockdown. We talk as friends whenever he calls me; he just wants to check in with me and catch up to make sure I am coping. I have family but they live very far away, and knowing the Hospice and people like Peter are always there – as a friend and as people who care for me – means the world.
Our palliative care is provided free to our patients but we cannot do this without your help. If you would like to support our Hospice head to our donation page to see how even a little can go a long way. Thank you.