Beryl and Alex at Queensland Haemophilia Centre
Beryl Zeissink was interviewed by Suzanne O'Callaghan, HFA
Beryl Zeissink is Clinical Nurse Consultant – Haemophilia at the Queensland Haemophilia Centre, Royal Brisbane & Women’s Hospital
What does “patient-centred care” involve for people with bleeding disorders? Beryl Zeissink, haemophilia nurse at the Queensland Haemophilia Centre, explains some of the complexities:
The day starts early. ‘One of the elements that makes me love my job is its unpredictability,’ said Beryl. ‘There are components of the day that can be planned for, like clinics and booked visits, but due to the very nature of haemophilia there is always the unexpected.’
On a normal day Beryl (and/or Alex, who is the other nurse with the haemophilia team) will commence work at 7am by checking messages on the answering machine and returning phone calls. ‘I usually wait until 8 am to call people back unless they say it is urgent because I figure people might still be asleep. Just because I start at 7 doesn’t mean everyone else is awake!’
These phone messages can vary, from needing a new prescription to people who have experienced a bleed overnight and did not go to the Emergency Department, particularly people with a mild disorder who realise they need a treatment but require assistance to infuse. ‘We encourage people to come in as soon as a bleed starts and as early as possible to get them in the queue for a Day Care Unit bed before it gets too busy,’ explained Beryl. Co-ordinating with the haematologist’s schedule is another influencing aspect: ‘We might also time their visit for when the doctor is available.’
Communication is very important. ‘It always helps if people leave a message with a bit of information so that I can judge the urgency and know how to prioritise the call back, particularly if I am juggling multiple things at the same time,’ said Beryl.
On Monday Beryl emails the HTC team on what is scheduled for patients that week.
If a patient has a planned surgery, Beryl’s day will kick off earlier. ‘At our hospital we also come in at around 6.30am if one of our patients is booked for surgery to prepare them for theatre. This fits around how their admission works at our hospital, because they are usually admitted on the day of surgery. We need to work closely with the timing of the surgery list and co-ordinate their factor infusions to make sure their bolus dose [single large dose] is given at the right time, an hour before surgery, to give them the best protection. We prefer them to be first on the list because that makes the time of their surgery more certain.’
Another regular activity of a morning is a ward round of hospital inpatients with bleeding disorders by the Haemophilia Treatment Centre team. ‘We like to follow up our patients who are in hospital to see how they are going. There is usually the haematologist, nurse and social worker from the HTC, along with junior doctors from the treating team in a non-haematology ward, for example the orthopaedic team might join the round in a surgical ward if the person has had something like a joint replacement.’
Haemophilia Treatment Centres provide comprehensive care. This often involves considerable liaison with the treating doctor and the patient and working with the patient on how to negotiate the system.
During the day Beryl may be taking a call from a surgeon preparing for surgery and taking their contact details and information about the patient so that the haematologist can call them back, or depending on the type of surgery, the surgeon may want to discuss the surgery with Beryl. Or she may be organising a factor treatment with a patient before a dental or medical procedure such as a colonoscopy. Sometimes they will need to liaise with the GP or a private surgeon so that they can administer the treatment product, and the patient will need to come and collect the product beforehand.
Travel for a person with a bleeding disorder often requires substantial planning. ‘We like to have as much notice as we can before someone is going to travel,’ said Beryl, ‘but while some people will plan ahead, others only give short notice, and that can make real difficulties for them and the Treatment Centre. For example, if someone rings me today to say they are going on a skiing holiday to Canada tomorrow and I have five patients waiting, it ends up being a crisis and they are not going to be in a good position to have all their documentation and treatment needs ready in time!
‘What someone needs to do if they are going to travel will generally depend on where they are going and how long for, and also on the individual patient, their diagnosis and their treatment plan. I check with them that they have travel insurance and if they were asked to declare their bleeding disorder and spell out the implications if they haven’t. I might advise them to check the location of HTCs on their route, if relevant.
‘We have a brochure about travel and I might send that to the patient to have a look at and think about. Someone with mild haemophilia who is going on a 2-week non-adventure holiday to somewhere well-resourced might not need to take factor with them. On the other hand someone with a severe bleeding disorder on home therapy who is carrying their product with them will need a letter from their doctor for the airport security and customs and in case they need medical assistance if they are overseas. They often find that they have more health dramas than usual if they are travelling and need to take that into account. I talk to them about how to pack their treatment product and that they will need to take it on board the plane as hand luggage so that it doesn’t get damaged or lost. We discuss what countries they are going to and whether there are reciprocal health agreements and what this means. If they are going to places that require extra documentation to bring in treatment product, they will need a few months to get the official documents organised. Depending on the patient, for example, if they have complications like an inhibitor, and they are travelling to New Zealand or even within Australia, I might be courteous and let the HTCs there know they are coming.’
If one of the HTC patients is moving to the country, Beryl will be in contact with the new health services involved in their care, walking them through the steps and their responsibilities. She will send them information on bleeding disorders from HFA and relevant Queensland Health policies for treatment and care.
At different times in their life individuals with bleeding disorders will have different treatment and care needs. The HTC clinics reflect this.
If it is Wednesday afternoon, Beryl will be at the HTC clinic to review existing patients. While the patients are waiting to see the doctor, she might have a general discussion with them, talk about treatment product supplies or MyABDR. It is an opportunity to update contact details on the hospital medical record and MyABDR. In the clinic consultation the data the patient has input into MyABDR will be brought up as graphs as part of the review of their treatment plan. She, Alex and the doctor will have looked at their record to remind them to follow up outcomes from their last appointment, for example, if they have hepatitis C, whether they have attended a hepatitis clinic and results of their hepatitis C tests or treatment.
If it is Thursday morning, it will be the HTC clinic for new patients. While the haematologist and the patient will be working out a treatment plan, Beryl has prepared for the clinic by checking whether the patient has consented to having their data in the Australian Bleeding Disorders Registry (ABDR) and whether they have details of their family tree to see who else in the family might be affected by the bleeding disorder.
Treatment is tailored to the individual. In haemophilia this increasingly involves PK (Pharmacokinetics) blood tests to guide dosage decisions; and for the nursing team, in conjunction with the haematologist, that means giving results and dose information to patients. DDAVP, often used by people with mild haemophilia A or von Willebrand disorder, also needs to be tested in an individual to see what their response is. The nurses educate patients about what is involved in a DDAVP challenge and organises their blood tests.
Patient education is ongoing and Beryl is always taking advantage of opportunities to incorporate it into her practice. ‘Whenever I am doing procedures, I always explain why we do things this way, for example, that when you have an injection to put firm pressure on the site afterwards to prevent bruising.’
With so many tasks to follow up, it is important to have systems to keep on top of them. ‘There is a board in our office with a checklist of “things to do”– from chasing up blood tests, who is on a waitlist for surgery and organising ABDR patient cards to making sure that there are current prescriptions at the pharmacy,’ said Beryl.
What constitutes best practice for a haemophilia nurse? ‘I do a lot of reading to keep up with things,’ remarked Beryl, ‘from peer-reviewed journals to the HFA and HFQ newsletters. It is also very important to have the opportunity to attend international and local education meetings, like the WFH Congress, but as a hospital nurse this requires a lot of paperwork and you can’t assume that you will attend as it may not be approved.’
As an experienced haemophilia nurse with considerable expertise Beryl also contributes to the national and international knowledge base. At the moment she is Co-chair of the Australian Haemophilia Nurses’ Group where national practice issues are discussed, for example, how to implement changes with a new treatment product rollout, or putting together nursing education on other new developments. ‘And it is always on my list to write articles!’ The list of things to do is always very long, and has to be prioritised, so some things just never get done unfortunately!
Measuring best practice and its impact on patient health outcomes involves statistics. For Beryl and the team this means inputting data about treatments and clinical interactions with people daily. She also supports HTC patients to use MyABDR to record their home treatments and bleeds so that the data can be entered in the national ABDR system. If they are having any problems, she gives them the contact details of the MyABDR helpdesk so that they can sort it out, but will also initiate the call to the MyABDR Support team at the time herself to facilitate the discussion between the patient and the helpdesk and advocate for her patient when they are not confident or time poor and have various issues.
As a senior nurse in a large hospital, Beryl also has non-haemophilia related responsibilities. As a matter of course she needs to keep up-to-date with the range of services and with her mandatory competencies, for example, resuscitation, fire, lifting and child protection. Once monthly she also needs to take her turn on a shift as a Cancer Care Services nurse manager, dealing with admissions, clinic times and re-allocating staff to manage sick leave.
Technically Beryl’s day finishes at 3.30pm. But with so much to take care of, it is not surprising that she often doesn’t leave on time. ‘No matter how you plan your day, it never works out the way you imagined because there is always the unplanned and that involves a complete reprioritising of your day. And self-care is important. I do need to remind myself that I am not a machine and that means finding some time for lunch!’
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