Introducing UKONS Members
“The Mission of UKONS is Inspiring Cancer Nursing”
The cancer nursing community needed a change. We felt we wanted all nurses — strategic, educational, researchers and those in clinical practice — not only to come together to share, learn and influence but also to link with our colleagues in other countries to work together in our special interests.
There could not be a more appropriate time for nurses to take a greater role in driving this change. The number of nurses who will benefit from a collectivist approach is enormous, given the diversity of cancer care nowadays for our patients. As the population ages and cancer incidence rises, coupled with the variety of effective novel treatments we offer mounting, there is a great need to share expertise through education, raise political awareness and linking with other organisations.
UKONS will provide one vehicle for this. UKONS is a prominent, collective voice for cancer nursing that is based on a fully consultative and interactive membership.
Social media is one of the ways UKONS will spread the word. On this page we will publish information about members' blogs and other social media.
STORIES OF HOPE FROM KINGSTON JAMAICA : ELLEN TRUEMAN
The UKONS Board is delighted and honoured to announce that it has received regular bulletins about cancer nursing in the Caribbean. UKONS member Ellen Trueman works in the Hope Institute Hospital in Kingston, Jamaica and has recorded her experiences in order to share them with the cancer nursing community in the UK.
In this next instalment of a personal experience of cancer nursing in Jamaica, Ellen Trueman discusses cancer treatment on the island. She describes the treatment facilities and approaches before going on to express her admiration for the dedication and resolve of people in the care of family members with cancer.
Nursing in Jamaica is both very similar and very different to that in the UK. In general, the nursing model is very medicalised meaning that a strongly biomedical focus on health and disease is employed. This is quite different from the UK where this approach has given way to a more holistic person centred perspective on treatment and care.
There are limited resources available for public sector health care delivery in Jamaica and this means that people have to be very resourceful and creative in finding solutions to day to day problems. At Hope Institute Hospital there are no volumetric pumps available to deliver chemotherapy drugs / intravenous fluids so staff still use ‘count the drops’ technology. However other resources are available here such as syringe drivers but not at other hospitals including the private hospitals. The onus can often be on the patient’s families and carers to purchase certain items that the patient might need and may include things like personal toiletries, incontinence pads and some medications although at Hope, patients may be provided with certain essential items that they need should they not be able to provide for themselves. The ‘public’ hospital (Kingston Public Hospital) is tremendously busy. Many of the wards have beds down both sides as well as a row down the middle. There might be over 40 beds in some of these wards so it’s not difficult to imagine the bustling business of a typical day. As well as the public facilities there are several private hospitals in Kingston but accessing treatment and care in these institutions can be beyond the financial means of many Jamaicans.
Hope Institute Hospital is the only dedicated cancer hospital on the island of Jamaica and so ‘cancer nursing’, as might be understood in the UK, only really happens here in a ‘specialist’ way. There is no formal oncology education or training on the island although a small number of nurses have completed specific cancer nursing programmes either through the University of West Indies or other university affiliated online programmes. Currently the only formal cancer nursing course is at the University of West Indies campus in Trinidad and Tobago. That being said, there are advanced plans to develop a post-registration oncology nursing programme in Jamaica and there are high hopes that this will be available in the not too distant future.
Cancer treatment and care
The standard cancer treatment approaches that are familiar to UKONS members are all available in Jamaica. Chemotherapy, radiotherapy, cancer surgery and some biological therapies are all routinely delivered but, due to availability and cost, these aren’t as readily available as they are in more developed countries
There are chemotherapy units at Hope Institute, Kingston Public Hospital (KPH) and the University Hospital of the West Indies. These are mostly day case units but some regimes are still delivered over several days as inpatients. There is very little use of ambulatory pumps except maybe occasionally in the private sector.
At Hope Institute, the Day Case Unit has 4 chairs and 5 beds and can be extremely busy. A familiar range of chemotherapy drugs are used including 5FU, Cisplatin, Carboplatin, Paclitaxel, Docetaxel, Cyclophosphamide, Gemcitabine, Epirubicin, Irinotecan and Oxaliplatin. Some of the chemotherapy drugs are available through the public hospital pharmacy whilst patients may be required to purchase others. These can be very costly and so ability to pay may determine if treatment is made available. This may be particularly problematic if it is second / third line chemotherapy as payment may have already been made for previous regimes. In the private sector the cost of healthcare can be considerable and is often covered by health insurance for those who can afford it.
Patients can travel long distances to receive treatment. They may live 2, 3 even 4 hours away and travel costs can affect their decision to come for treatment in Kingston. Many will travel by public transport – buses – on very long journeys. It is not uncommon for patients to say that they got up at 4 a.m. to get a bus into town so as to reach the hospital by 8 or 9 in the morning. They may then wait for several hours to be seen and/or receive treatment. This is particularly the case for patients needing radiotherapy at the Kingston Public Hospital as this Department is very often busy and overstretched.
Surgery may be offered with the aim of complete resection or reduction in tumour bulk, often carried out by extremely skilled surgeons, particularly within head and neck cancers. This may be followed with adjuvant chemotherapy or radiotherapy (or both). Where surgery is not possible or not wanted (which can happen) then the offer of radiotherapy and/or chemotherapy will be considered if it represents a viable alternative treatment.
In terms of radiotherapy, there is one cobalt machine at the Kingston Public Hospital and one at Cornwall Regional Hospital in Montego Bay. However, the greatest numbers of patients are treated at the Kingston Public Hospital and the one machine there is ‘very well used’. Treating patients can extend from early morning to late at night (staff frequently working long days of 12+ hours) so as to treat as many patients as possible and patients can often have long daily waits. There can also be long waiting lists (perhaps several weeks) to start treatment as demand inevitably outstrips capacity, although those receiving palliative treatment are more likely to start immediately where possible. There is no simulator or mould room at the Kingston Public Hospital Radiotherapy Department.
There is a private radiation centre in Kingston and the equipment there includes a linear accelerator, simulator and facilities to make masks for head and neck patients. Sometimes those having radical radiotherapy (most often head and neck patients) will try to fund simulation and having a mask made at the private centre but then have their radiotherapy treatment on the cobalt machine at KPH. This is because to have all the treatment at the private centre can be extremely costly and out of many Jamaicans financial ability.
Hope Institute is the only place where specialist palliative care services exist. In the general hospitals the principles of palliative care are still not widely disseminated or practiced. The Palliative Care Association of Jamaica (PCAJ) was formed a few years ago and this links in with Palliative Care Associations throughout the wider Caribbean. This is a very dynamic and motivated group of individuals who meet up regularly to discuss how to develop and improve palliative care on the island. In partnership with other Caribbean Palliative Care Associations the first regional Caribbean Palliative Care Association Conference will take place in Kingston in April 2015. This will be hosted by the PCAJ in partnership with Hope Institute.
I am actively involved in the PCAJ group and have participated in PCAJ workshops. At Hope I was recently involved in developing and delivering a series of summer workshops explaining the principles of chemotherapy, radiotherapy and palliative care. These were very well received and evaluated. A further series of specific study days / workshops is planned, through Hope Institute, to further support oncology and palliative care education.
Community palliative care services
Currently this is only available as a private service for those who can afford to pay for home visits. A community palliative care service for all, regardless of ability to pay or not, is one of the key objectives that the PCAJ are working towards. People with cancer die both at home and in hospital but having a realistic choice of where they would prefer to die is only really an option for those that can pay for palliative care at home.
Often family and friends are the main carers for people who do not require inpatient care or cannot access it. In general, hospital visiting is still quite restricted compared to the UK. As elsewhere, the love and dedication of friends and family can be amazing and very moving as this extract from my journal illustrates......
‘...he (her carer) hadn’t slept properly for weeks, if not months...he was exhausted...but he wouldn’t have it any other way...she was his life. He cared for her in a way I’d never seen before - doing everything for her...from being by her side at all her appointments...to changing the dressings on her wounds and helping with her tube feeding...but most of all he gave her love...unconditional love....nothing else mattered...he just wanted her to get well....’
This and similar incidents have had a profound effect on me and so much has happened over the last few months that I feel like I am riding an emotional rollercoaster – there has been a lot of sadness and heartbreak but also much laughter and joy! The friendships I have made, not only with colleagues, but with some patients and their families/ carers have enriched my experience in ways that I never expected. At times it is hard to put this ‘experience’ into words and as I wrote in my journal after my first extended visit here in 2009.....
“Caring is a universal language, yet so often we only see things from our own perspective. International partnerships and mutual sharing of knowledge and skills promotes multicultural learning. This unique experience of caring and sharing with fellow colleagues in Jamaica has enriched both my professional and personal life. If we are to continue building bridges around the world, then we need to care with compassion and share from the heart”.
Ellen's first bulletin is presented below. In this Ellen discussed her decision to leave Leeds and gain experience of working in another country.
Have you ever wished that you’d lived and worked abroad ….. that you’d have the chance to sample the lifestyle and culture of a different country. Many oncology nurses have gained rich experience of employment in different countries particularly Australia, USA or the Gulf states but fewer have gone to countries where the healthcare system is not as rich or developed as in the West. One of these is UKONS member, Ellen Trueman, who has developed a long standing connection with the beautiful island of Jamaica. This is her story.
Looking for Hope
The Hope phase of Ellen’s life began in 2007 when she was looking for an opportunity to do some voluntary work overseas. This was something that had always interested her and her chance came when she stumbled across an article in the British Medical Journal about a doctor working at a small cancer hospital in Kingston, Jamaica. The doctor was Dr Dingle Spence - a Consultant in Oncology and Palliative Medicine and the Director of Hope Institute Hospital – a 34 bedded specialist cancer hospital – the only one on the island. After reading the article Ellen somehow immediately knew that this was where she wanted to go. The story and vision that Dr Spence had for improving palliative care services in her homeland and the reasons for her returning to Jamaica after many years working in the UK inspired Ellen. The rest, as they say, is history and everything gradually started to fall into place.
Up until that time, Ellen had always lived in Leeds and brought up her family in the city. Whilst she might have been a late entrant into nursing (qualifying in 1995) she was highly active and energetic
completing post registration education in oncology and palliative care before winning a spate of awards. These include Nursing Times 2011 Cancer Nurse Leader of the Year and most recently QiC – Excellence in Oncology award for radiotherapy work. Additionally she published in a number of journals and presented at national and international conferences.
Ellen would maintain that she found her vocation in life when she took up her first staff nurse’s post in an acute oncology ward at Cookridge Hospital in Leeds in 1995. From the outset Ellen was both inspired and encouraged by the people she worked with and, 20 years later, she remains enthralled by the skills and dedication of all those employed in cancer treatment and care in Leeds. For Ellen, it is the people that she’s met, and continues to meet, that remind her, each day, of what it is that she loves about her job.
Ellen has lived with change during her career notably in 2008 when the last radiotherapy patients were treated at Cookridge Hospital before re-location to a new purpose built oncology centre on the site of St James’s Hospital in Leeds where Ellen is now Senior Radiotherapy Sister. The change continued for Ellen as a matter on months later she was on her way to Kingston for a 9 week self-funded placement as a volunteer nurse at the Hope Institute Hospital.
Volunteering to go to Jamaica
Becoming a volunteer nurse in Jamaica wasn’t easy and many obstacles and ‘red-tape’ frequently tested her enthusiasm and resolution. However Ellen showed the determination, dedication and commitment that so characterise her working life and was ultimately rewarded with success. As the plane landed in Kingston in April 2008 she was both excited and apprehensive at what lay ahead. Whatever happened, she knew it would be a life-changing experience – and it was. It was such a rewarding and fulfilling experience that Ellen is now on her fourth visit to the Hope Institute to help as a volunteer nurse. These visits have been both short (a few weeks) and long (lasting several months). The very nature of volunteering means that there is no ‘wage’ attached and so careful planning is required before any visit!
Ellen’s latest trip began in March 2014 and is scheduled to last 7 months. She found that whilst there have been many developments in the management of cancer there are still a lot of obstacles confronting those involved in the treatment and care of those affected by the disease. Jamaica is a resource-poor country with a desperately under resourced health system presenting many daily challenges in trying to meet the health and ill-health needs of the population.
On many levels tremendous work is carried out by dedicated and skilled clinicians who utilise the knowledge and experience that they’ve gained from working in developed countries. However, oncology and palliative care practice and education in both medicine and nursing is still in its infancy. This is gradually changing as improvements to cancer services throughout the island are gathering pace. The recent development of a Cancer Plan for the island offers clear objectives designed to improve the continuum of cancer care, from prevention to end of life care. The vision of creating a ‘Total Cancer Centre’ on the island is now part of the long term cancer plan – comprehensive cancer care delivered in a centre of excellence by skilled, trained, knowledgeable ‘experts’ is slowly taking shape – how long it may take to become reality is a moot point – but at least it’s on the agenda.
Recognition of these challenges and a sense of worth and fulfilment are what keep Ellen going. This is particularly important when frustration and a sense of hopelessness might sometimes be natural responses to the enormity of the task of treating cancer with limited resources. This extract from Ellen’s journal (April 2008) illustrates this point.
“My passion for looking after people with cancer, for caring for those less fortunate, for working in areas that are less developed, that have fewer resources, that should have what developed countries have – I don’t know where that passion came from. It is hard to see how I got into it, hard to know why this type of work can be addictive. Only talking to others who have done similar things reassures you that it is not just about being a ‘do-gooder’ – that it is about much more than that. It is about personal and professional fulfilment – about caring and sharing common skills and knowledge with likeminded professionals – about making a difference to those in need of health and illness interventions. I really feel that I have been given a unique opportunity to share both common and different experiences with fellow human beings in another part of the world – an opportunity that often doesn’t come along for many people, unless they seek it out or stumble across it by chance – like I did. Whatever the reason that brings people together for the common good of helping each other - I can only say that I am grateful that it came my way”.