Member Best Practices
LBC's Approach to Optimising Support for Patients with a Blood Cancer
The patient experience when dealing with a blood cancer can be a time of great psychosocial upheaval, something that is well understood by Leukaemia & Blood Cancer (LBC) New Zealand. This is evidenced by LBC’s patient support services team of seven people who meet with patients around the country, and who are based within the major regional oncology and haematology treatment centres in New Zealand; namely, Auckland, Christchurch, Hamilton and Wellington.
“The rationale for having staff based in the same locations as the major treatment centres is mostly because of the dispersed population. As well, very often patients and their caregivers have to relocate for treatment which is often very traumatic,” said Pru Etcheverry, the Chief Executive Officer of LBC.
“LBC’s patient support team provides patients with support in whatever form that needs to be,” she said. All members of LBC’s patient support team are either haematology- or oncology-trained registered nurses although, on occasion, some have had a psychology or social work background.
Patients may contact LBC on their hotline to better understand their diagnosis, treatment or the role of clinical trials.
“Where the rubber hits the road, though, is around the psychosocial aspects such as worries about their family falling apart, financial implications like putting food on the table, employment and so on,” said Pru.
Findings from the 2016 Lymphoma Coalition (LC) Global Patient Survey showed that, globally, 22% of respondents were affected by loss of employment and 19% of respondents reported experiencing difficulties at their place of employment. Among respondents from New Zealand, 45% were affected by loss/reduction in employment, the highest of any member country that participated in the survey.
Providing Patient Support in a Hospital Setting
Patients also need support while in hospital undergoing treatment. To help with this, LBC undertook to sponsor the Support and Wellbeing Room in the Motutapu Ward at the Auckland City Hospital. This room is part of the Northern Regional Haematology and Bone Marrow Transplant Ward which opened in 2014.
“This LBC-branded room sits in the heart of the ward,” said Pru.
After lengthy consultations LBC had with the nurses and other members of the clinical care team, including physiotherapists and occupational therapists, it was determined that the room would have some physiotherapy as well as occupational therapy equipment.
“We also negotiated having a member of LBC’s patient support team present in the room one half-day every week. While LBC has good access to the ward and is well respected, it is still hard to always be top of mind and get patients referred to LBC services,” she said.
Having a presence on the Motutapu Ward did result in an increase in the number of referrals of patients who were newly diagnosed in Northern Region of New Zealand to LBC: in 2014 referrals/self-referrals to LBC were 46.3%; in 2016 they were 57.4%.
“The increase in referrals was not solely down to having this room but part of it was because of our presence,” she said.
Hospital staff, including physicians, have been supportive of LBC’s presence on the ward.
“We’ve been welcomed with open arms by the haematology community in the hospital,” she said.
Challenges with Optimising Use of Room
Over the two years that the Support and Wellbeing Room has been open not everything has worked as well as expected.
“The room is not being used as envisioned at the start or as much or as well as it could be like it was when first opened,” said Pru. Part of this could be a result of changes in hospital staff and a lack of a physiotherapy or occupational therapy resource being allocated to the ward.
“We’re in the process of evaluating the approach to take going forward. We’ll do this in consultation with the ward and work to make changes,” she said. In spite of the room not being used as often as originally envisaged, Pru thinks it has been a success.
“If I was going to wind back the clock and ask ‘Should we do this again?’ I would for a whole lot of reasons. If nothing else, for building relationships with the healthcare teams and the patients, as well as having permanent awareness which is really important,” she said.
In fact, LBC is in consultation with the hospital rebuilding team in Christchurch where massive building operations are underway following the earthquake that occurred in 2011.
“The plan is to explore doing something similar to what was done in Auckland,” she said. The building is likely to be completed in 2018.
Building a Credible Patient Support System
While it may not be possible for other LC member countries to undertake something similar to what LBC did at the Auckland City Hospital as it is expensive, there are less expensive ways to connect with patients.
“Our entry level to supporting patients is to have as big a presence as possible on hospital wards and outpatient centres by having our materials available,” said Pru.
Materials need to be in a good location, presented attractively and always well stocked. Pru has seen what happens when those factors are in place.
“My mother was undergoing treatment for a blood cancer in haematology centre far from Auckland. While we were waiting to be seen in the clinic, everywhere I turned, there were LBC posters promoting our Shave for a Cure campaign. Our information was even behind the nurses’ station. Our newsletter was there and our brochures were everywhere,” she said. And she saw both doctors and nurses selecting information booklets and giving them to patients.
“I think getting access and credibility are key. We did that booklet by booklet building it into a very credible and respected information service,” said Pru.
Many thanks to Pru and her team at LBC for their diligent work to connect with patients and provide them with the support they need throughout their experience.