I work at St Leonard's Hospice in York, which
opened in 1985. We are currently celebrating our 30th year. It's an
independent charity, providing specialist palliative care and
support for local people with life-threatening illnesses. We have a
20-bedded in-patient unit, day care, a hospice-at-home service, and
a lymphoedema outpatient clinic. It receives some public funding,
but the majority of the running costs have to be raised from the
I'm the lymphoedema Sister, and run the nurse-led
lymphoedema clinic three days a week. Most of my time is spent
working with outpatients who need specialist support to manage
their condition; but I'll also work with any in-patients who
require my skills.
Lymphoedema is a swelling that develops as a result of an
impaired lymphatic system. It can't be cured, and it commonly
affects cancer patients, often as a side-effect of treatments. It's
seen as swelling, commonly in the limbs, but it can affect other
areas of the body. It can lead to immobility or pain, discomfort,
loss of function, anxiety, depression, and altered body image.
I find my work deeply satisfying. The reward is to help a
patient achieve something that's important to them, or improve
their symptoms. If I can, through using bandaging and massaging
techniques, reduce the swelling, and help a person wear a special
pair of shoes or manage to ride a motorbike again, then I feel my
time's been well spent.
I had very little life experience of death until I started my
nurse training. Then, from the age of 18, I was regularly
encountering hospital deaths. I saw it as part of the job. You
never forget the first experience you have, though. Mine was quite
a traumatic one: an unexpected death with no family there, on a
medical ward at 6 a.m. at the end of a long night shift. Lots of
doctors were there trying to resuscitate this elderly patient, and
then curtains were drawn around and that was it: everything and
just nothing. But I thought, This is how life is. I've got to cope
with it. No time for tears or emotions.
But I thought it could be so much better, and treated
with so much more dignity. I was really inspired by the work of
Dame Cicely Saunders. Sometimes it is just about sharing the
journey and being alongside the patient, listening, giving that
person your time. That matters.
I was fortunate to work in a hospice in Leeds for a year.
At the time, I was considered to be too young to devote my career
to working with the terminally ill; so I trained as a midwife. But
I always felt a longing to return to hospice care. For a while, I
worked as a volunteer nurse at St Leonard's, but when a job became
available I just had to apply.
I'm very aware of distinct changes in the hospice
movement. It's a national thing, not just where I work.
Death is much more medicalised. We used to have more teamwork and
nurse-leadership. I'm not sure that patients altogether realise
that death is very close, because we're not as good as we were at
talking to patients. They used to be having their hair done and a
glass of sherry. Now, some are still having palliative chemotherapy
or hospital appointments until they are dying, and we have more
doctors, more drugs and treatments.
I don't think we'll ever go back to those days. Hospices
have changed to provide symptom-control, and some people choose
actually to die in their own homes. We mustn't think it's entirely
negative - a lot of good has come about. But some of the more
spiritual questions are being squeezed, and people don't have the
time to reflect as they draw near to the end of their lives.
I have a wonderful family. Paul and I have been married
for 14 years, and we have two boys, Harry, aged 12, and Tom, aged
ten. Tom has a rare chromosome disorder and needs lots of care.
When I reflect on my life, I sometimes think that God has
been training and preparing me through some of my nursing and
midwifery experiences to be the mother of a severely disabled
child. The last ten years have been something of a challenge, often
likened to living on a rollercoaster, but as a family we have been
so blessed, and our lives are richer for the experience.
God is definitely there and helps us, particularly during
the tough times. When our son is poorly, it's hard, but we just
take a day at a time and don't plan too far ahead. If nothing else,
recent years have taught us as a family to live in the moment, and
that is a blessing. We're fortunate to receive respite care and
support from our local children's hospice and the numerous
healthcare professionals in our lives.
It is hard to recall a first experience with God. God's
always been there waiting. I didn't grow up in a churchgoing
family, but I remember loving a book of Bible stories. As a
teenager, I started to attend church, encouraged by a teacher, but
it wasn't until my early twenties that I experienced the presence
of the Holy Spirit. I remember feeling quite overwhelmed and truly
I feel that my experience of God is constantly going through
growth and change. Increasingly, God is present in my
life, and asking me to share something of my life with Tom.
I have experienced the presence of God, just talking with
patients. I'll always remember being with a hospice doctor
talking to a young blind man in his early twenties, so calm and
dignified, just days before his death, and feeling the presence of
God in his room. Time felt suspended. My senses were totally alive
in that moment. The memory of this moment will always stay with
I had a similar encounter with God when Tom was three
weeks old, in intensive care. I knew things weren't going
well, and he was having seizures and fits. One morning, he had
several seizures, alarm bells were ringing, and I was asked to
leave the room. I knew it was really serious and sat alone in a
little coffee room, watching from a distance, wondering, why do I
feel so calm? I felt suspended, very calm - and I think it was God
alongside me, saying, "Everything will be OK."
It took about five years to get a grip of how life was going to
be. Unfortunately, winter seems to be a particularly bad
time. Tom had five or six admissions to hospital over this winter.
We never thought this would happen to us, but so much good has come
out of it. We just enjoy now - it's a great blessing. We decided
that we'd both work part-time. We have real quality family time. I
look at other people on a treadmill of going out to work all the
time, and know that we have a blessing.
We don't know what Tom's prognosis is. He may outlive us,
but he may not. It's an uncertain future, but we think we'll just
There's also a lot of laughter and humour in these
situations. One day I tried to clean my son's teeth. He
choked on the toothpaste and I had to dial 999. I said to Harry:
"Can you go and meet the ambulance?'" He was ten then, but he made
them a cup of tea (Tom was recovered by then), and played them a
tune on his trumpet, and we all howled with laughter.
I was so proud of him. He's grown up with this,
you see. He just absorbs this as part of his life, and it's made
him a beautiful, strong person. Of course, you do feel guilty as a
parent because you have to spend so much time with your ill child;
but we have a lot of support, and we're very lucky. Many parents
don't have that.
I do love my home, and the beautiful surrounding
Yorkshire scenery: God's own country. I would some day love to
travel to see the Northern Lights.
I don't think I'm terribly ambitious. I'm content to let
God decide what's next. But I do consider the completion of my
first pair of hand-knitted socks to be one of my greatest
I'm not really an angry person, but it upsets me to see
resources being wasted, or when people complain about the NHS.
We're so fortunate in this country to have easy access to health
care, and we take so much for granted.
I'm happiest at home with my family. I love just
pottering about at home in the kitchen, doing a spot of baking with
the radio on.
My parents have been a great influence. They taught me
the value of hard work.
I pray for my family and the health of my children; but
also those I meet in day-to-day life. Often the drive to work is
where I turn to prayer, asking for help with patients and for
myself so that I can work to the best of my ability in the day
ahead. Watching the news and seeing pictures of world events also
prompts me to pray.
If locked in a church, I wouldn't mind spending some time
with the Archbishop of York. I've always found his words very
inspiring and challenging. I'd just enjoy a good chat.
Julie Shepard was talking to Terence Handley MacMath. www.stleonardshospice.org.uk