Barbara Burles was one of the Hospice’s first two paid, part-time community nurses, starting in post in July 1980 as soon as the first £25,000 had been raised to launch the home care (domiciliary) service.
She’d qualified through the Royal College of Nursing in 1952, and later added to her professional skills with a ‘Care of the Dying’ certificate. While raising her young family, she nursed at a care home in Woburn Green in Buckinghamshire and later in the casualty department at Amersham General Hospital.
But she wanted a nursing role which used her expertise with the terminally ill and their families, supporting them holistically, and ensuring that quality of life continued for as long as was possible, which is where the Hospice came in...
Here Barbara recalls her memories...
“I joined the Hospice in 1980 as one of two Hospice Domiciliary Support nurses, which was a radical innovation coordinated by Pam Macpherson in the early days, together with local GP surgeries.
Either the family GP, hospital consultant, district nursing team or a close relative or friend would ask for the support nurse’s involvement in patient care and with the necessary written consent from the patient’s GP, I used to gather essential medical, personal and family information before a first visit, to assess the complex needs of the patient, relatives and carers.
In providing home-centred support, I worked alongside the district nurse, health visitor or social worker, advising and counselling but not giving medical care.
At the time, this was a pioneering approach to palliative community nursing, initially not fully appreciated by other professionals, so I had to persevere to consolidate my role in the care team, relying on the GP to support me.
For the district nurse, home visits to patients had time constraints, but in my specialist nursing role I was able to give unlimited time, comforting and counselling, dealing with stress and anxiety in the home, and allowing difficult questions to be asked and addressed.
With no NHS screening programme and a reluctance to consult a doctor, people were inclined to ignore or supress symptoms, so they presented with advanced cancer - regarded by many as a ‘taboo’ disease, and in my role I often encountered secrecy or misinformation, with many patients not being told they were dying and feeling isolated and resentful.
It was challenging, and I remember that at times I found this demoralising, but my aim was to achieve greater understanding between everyone in the home, which improved relationships, maintained confidence in the medical team and, for the patient, gave hope and positivity.
I had some really inspirational families in my care, and it was a privilege to work alongside them on their journey.
When the end of life came, I would stay with the family for as long as they needed me, contacting the doctor and funeral directors as necessary. I would attend the patient’s funeral if the family wanted me to be there, and follow up with bereavement visits so they could talk with someone who knew their loved one and understood their loss.
I was occasionally asked if my work with the dying was depressing. Of course there were some very sad times, but giving personal attention, not only to the patient but to the whole family, and having empathy with them, sustained me.
I was also grateful to have my family at home, and my strong Christian faith. Treatment for cancer wasn’t very advanced and it was difficult at times knowing the limitations of such treatment.
When St Francis House and the Hospice organisation developed and began admitting patients overnight in 1986, I took the opportunity to transfer to the in-house nursing team as a Staff Nurse, giving the hands-on nursing care which I loved.
My colleagues and I helped to run a bereavement supper club – at which a recently widowed gentleman named Don met and later married Valerie Newman - one of the nurses!
In looking back on my community nursing career, I remember one patient I supported through treatment and surgery very fondly. Visiting him one day, he came to the door in his pyjamas, dressing gown and slippers. I managed to convince him that he’d made a good recovery from his operation and was convalescing well but he needed to get dressed and have a daily routine.
He took my advice - much to the delight of his wife and family. Consequently the atmosphere at home changed, with the focus being on living and staying positive. He regained his confidence and self-esteem, recovered enough to return to work for some months, and attended his son’s wedding, to which I was invited. His wife wrote to me afterwards to thank me for my support and encouragement, as it had “given their lives some normality and hope.”
If I could give some advice to today’s palliative nurses, I’d suggest they should aim for a good life balance for themselves and be involved in activities outside of nursing, so that it doesn’t become totally absorbing. I had my children to bring up, I was dedicated to my faith and involved with St Mary’s Church in Chesham, and I enjoyed a busy home and village life in Bellingdon.”
When Barbara retired from nursing in Shrublands Road in 1996, colleagues marked her significant contribution to the Hospice with a special presentation. Her dedication to patients, both in the community and later with the in-house nursing team, epitomised the Hospice’s ethos – which maintains to this day - of helping people to live their precious lives well.