Bev has a better understanding of palliative care than many St Clare patients as before she retired, age 69, she was a gynaecology and oncology Clinical Nurse Specialist in the NHS. Bev has had a long career in palliative care, not only working in the UK but also volunteering to teach palliative care in many low and middle-income countries, including Uganda, Sub-Saharan Africa, Serbia and the Ukraine.
Bev was also involved in the very beginnings of St Clare, when the local charity was founded over 30 years ago and remembers ‘traffic parties’ where people sat where the hospice building was going to be and listened to see if the M11 traffic was too intrusive!
Bev is living with Sjogren’s syndrome, which is an autoimmune disorder where your immune system mistakenly attacks your body’s own cells and tissues, and recently spent a week at the St Clare Inpatient Unit.
Symptom management
“I got diagnosed last year and my GP had contacted St Clare twice recently because of the distressing nausea and vomiting I’d been experiencing for about a year. The St Clare medical team recommended that I came into the unit to try and get them under control, and to be honest, I thought that I might not ever get home again.”
“With my experiences as a palliative care nurse, it did feel strange being in the hospice because I’d been in so many in my career, I felt I should be helping out! However, what I liked about my week there was that we worked together as a partnership.”
“Often as a patient you feel that you are no longer in control of your life, but with Dr Abbas and the whole team at St Clare, it wasn’t like that.”
“I was asked right at the beginning what my expected outcome was from my admission and that was really refreshing. I get a lot of nerve pain which is notoriously difficult to control, but the St Clare team absolutely did their best and I can’t fault them.
“I arrived not thinking I’d leave and I was discharged with my symptoms under control and able to get home to my family and my rescue greyhound Holly.”
Planning for the future
“I have very firm views about what I want and what I don’t want. I was keen early on in my diagnosis to have the Do Not Resuscitate (DNR) paperwork in order because now I am at the stage I am I want absolutely no emergency intervention at all. I have bought a plot at Forest Burial which has some lovely memories for me as it is where I used to ride my horse.”
“I want it all planned as I want to make it as easy as I can for my family.”
“I know I want my coffin in the hall at the burial ground so my family – who have various hip and back problems – don’t have to carry me in. I don’t want them to drop me! I’ve also written ‘goodbye and thank you’ letters to my family so things are organised.”
Bev is now back at home with her family but knows that if she needs St Clare again, they are there for her to dip in and out of.