With the outbreak of COVID-19 the importance of hospice care at home is proving to be greater than ever. The Hedger family had first-hand experience of this valuable service after their 33-year-old son Andrew was cared for by St Elizabeth Hospice in Ipswich until his death from bowel cancer in July.
“From Andy’s first contact with the hospice and throughout the time he was under their care he’d say to me, ‘I am now being treated like a person and not just as a set of symptoms’” his mum Sue says.
“He said the nurses, who cared for him, were fabulous – they understood him and made sure he felt comfortable. It was important to him that he was cared for at home, and that he would be able to die at home, and this is exactly what the hospice made happen.
“He passed away surrounded by his mum and dad, Elise his partner, close friend Carl, and Axle the cat in an environment that was familiar to him. At such a difficult time it was a comfort to us all.”
Getting through a difficult time
Following a period of ill health, initially thought to be pancreatitis, during which he visited A&E on several occasions in late 2019, Andrew was diagnosed with bowel cancer in February this year.
Sue says: “It was an extremely distressing time and Andrew rang me and his dad Graham from Ipswich Hospital in tears, to tell us ‘I don’t have pancreatitis, I have cancer and they are going to operate’.
“You go weak at the knees and don’t know what to think. I remember Andrew saying to me ‘Mum I know we all have to die at some stage, but I thought I had a lot more living to do first’.
His surgeon, Mr Dikki, was brilliant to us and Andrew, and kindly called to explain how the operation had gone – he had removed all the cancer he could see. Unfortunately histology later revealed the cancer was a particularly rare and aggressive form. It was incurable, which meant Andrew started a chemotherapy programme to reduce the discomfort he was experiencing.
Living well till the end
“Thankfully in the last two years of his life, Andy found his niche by working as a technician assembling distributers and carburetors for high performance cars which was something he was really passionate about.
“He was looking forward to returning to work when the chemo had stabilised his condition but unfortunately due to the aggressiveness of the cancer, this proved not possible.”
The Hedger family learnt of the services provided by St Elizabeth Hospice while Andrew was receiving chemotherapy at Nuffield Health Ipswich Hospital, when a paramedic recommended the charity.
Within 24-hours of referral the family were under the hospice’s care. They received support via St Elizabeth Hospice’s Virtual Ward – a newly created service in response to the COVID-19 pandemic, providing tailored care to people at home.
“Andrew had ADHD and disliked change. It was very important to him that he was able to receive care in a familiar setting, so the Virtual Ward was perfect for him” Sue explains.
“Initially the hospice helped Andy with daily pain relief and emotional support. When required they set up a hospital bed, a wheelchair and equipment at his flat so he was more comfortable, and were able to provide personal care and advice to us when we needed it.
“Even when his landlord needed him to vacate his property for renovation, the hospice ensured Andrew had another bed and ramp at our house. Throughout, they were able to support Elise as well as us.
“At every point they put Andrew’s comfort at the centre of what they were doing, right up until the day he died. Being at home lessened the pandemic’s constraints. He spent valuable time with Elise, saw family, friends and his cat, and enjoyed his garden as well as visits to the cliff top at Old Felixstowe.
“The care he received was in stark contrast to our experience 31 years ago when my father had been ill and passed away from MND. Then there was no hospice help. The MND Association was helpful, but you had to find the information out for yourself.
“Many people have preconceived views of hospices but they are there to help people when help is needed most. They aren’t places where people go to die. They are for living, where people can enjoy life when it matters most. Every minute is precious and all the staff who work there understand this. That’s what make it such a warm and empathetic environment to be a part of.”