10 years of home delivery

PENNY MCCARTHY AND MEGAN WALSH

Penny McCarthy and Megan Walsh are Clinical Nurse Consultants at the Ronald Sawers Haemophilia Centre, Alfred Health, Melbourne

HOME DELIVERY

Home delivery of clotting factor replacement therapy is a service that needs to be arranged by treating health professionals. It may not be suitable for everyone. In some Australian states and territories there are different arrangements in place from those described in this article and home delivery may not be available to you. If you have any questions about home delivery, speak to your treating team at your Haemophilia Treatment Centre.

It been nearly 10 years since home delivery of recombinant factor concentrates became available in Victoria. Some families probably accept it as a normal part of haemophilia care and assume it has always been there! We thought we would reflect on the impact the home delivery program has had on our Centre.

REDUCING THE WORKLOAD

One of the biggest changes was reducing the workload for the blood bank staff at our hospital. Previously the vials would arrive from the pharmaceutical company, have to be unpacked, entered into the computer system and put in the fridge, which also involved stock rotation. Once the blood bank staff received a release order from the Haemophilia Treatment Centre (HTC) they would then have to collect the vials from the fridge, dispense them via the computer, sign them out in a log book and give them to the patient waiting at the window.

As an isolated occurrence it would not be too onerous, but with over 100 patients on home therapy all using approximately 12 vials a month, it became 1200 vials each month for blood bank to handle twice, and store in the fridge. This was overwhelming for a small staff in a small area, with a small fridge, running a very busy blood bank service that already cross-matches approximately 1200 units of blood each month. As many HTC patients were working, many wanted to collect their product after-hours from the blood bank. However, this became problematic as there was only one staff member working, who was dealing with all the demands of the hospital. If a major trauma incident was being managed by the hospital, the staff member had no time to dispense the factor and the patient was turned away.

CONVENIENCE

We feel the biggest benefit to patients has been the convenience of home delivery and less interruption to everyday life. Regular product delivery has improved the management of haemophilia by patients at home and anecdotally we have seen an improvement in joint health. There is no more running out of factor and missing doses.

The team made the decision early that all patients using treatment at home, and where delivery was available, would be transitioned to a home delivery service.  Many embraced the change: no trudging to the hospital monthly; no paying for expensive car parking (if you could find one!). However, others felt some loss with not coming to the hospital regularly and were slow to join.  Initially for some, sticking to a nominated delivery day and time frame each month was challenging. However, as delivery windows became more attractive and after hours deliveries were introduced, we now have all of our patients using product at home on home delivery. To date no one has asked to go back to the old way of collecting from the hospital.  

COMMUNICATION

In our Centre the nurses decided to manage the home delivery orders. This has been an interesting addition to our work and has highlighted to us much about the challenges of managing haemophilia at home. We realise that our patients would prefer to keep phone conversations to a minimum, so SMS messaging from our computers has been a great success for all. The monthly contact by SMS has also kept a line of communication with the nurses and fostered a relationship with patients many of whom we may only see once a year. We often get a little message or query with the product order reply. For example, ‘Happy Easter’ or ‘How do I organise travel letters?  Or ‘How do I see the doctor?’.

We have noticed many people are creatures of habit.  The patients who record each treatment and reply to the SMS messages in a timely fashion appear to be managing their condition well. If all of a sudden this pattern of behaviour changes, it often signals something has changed in their life. This could be happy or sad event: for example, a new baby or job, illness or dealing with elderly parents; it could be anything that is providing a distraction.  A quick question of ‘R U OK?’ can be enough to let them know we are here to help. As we are organising the monthly home delivery, it prompts us to check the individual treatment records before the order is processed. If we note a move from the prescribed treatment plan or increased bleeding, we contact the patient to check everything is OK and offer further intervention as required, such as ‘How is the elbow bleed settling? Can we make you a physio appointment?’

STREAMLINING

Providing the patients with delivery calendars (we ask the pharmaceutical company to provide them for the patients) has assisted our patients in being organised to receive the deliveries on the scheduled delivery day in the delivery window.  The introduction of after-hours delivery windows from 6-8pm three evenings per week or on a Saturday morning (depending on the company whose product you use) has decreased the number of missed deliveries.  This is important to keep the costs down and to ensure the service is maintained.

A noticeable change has been the reduction of stockpiling, now that patients trust the system and know they will receive factor as required each month. This in turn has reduced wastage as the vials are now rotated regularly and not hiding in the back of the fridge and accidently expiring. 

ABDR AND MYABDR

For us the ABDR (Australian Bleeding Disorders Registry) has been another useful tool to manage treatment at home. We now have one place where all the factor treatment information is stored. This includes order forms and patient treatment records (MyABDR) and a real time factor inventory for each patient.  We use the ABDR constantly: we now have two computer screens at each desk so it is readily accessible all day, providing up-to-date information about our patients. The MyABDR app is constantly being updated and tweaked making it more user friendly. Most of our patients find it very easy to use now.

Good communication between the HTC, pharmaceutical company, patient and support from the National blood Authority has been the key to ongoing success of this program.

Sometimes it is not all smooth sailing, and a little intensive encouragement is required by some to get their order in on time, MyABDR records up-to-date and be home to sign for the delivery. However, we think that HTC staff and patients would agree that this program that we now take for granted has been a very positive addition to managing haemophilia at home.