Just over a year ago, Cassy was diagnosed with the rare autoimmune bleeding disorder immune thrombocytopenia (ITP).

‘It was a big life change. I have been in and out of the Emergency Department (ED) and on different medications trying to get it under control,’ said Cassy, from Gippsland in rural southeastern Victoria.

In individuals with ITP, the immune system destroys their blood clotting platelets. As a result, their blood does not clot properly.

People with ITP bruise easily and, when their platelet count is very low, they are at risk of spontaneous bleeding and internal bleeding.

However, they also run the risk of significant side effects from ITP treatments, and the burden of treatment can be very high, with many patients having to juggle blood tests and clinic appointments with work, study and looking after their family.

Frequent visits to the ED and hospital admissions left 33-year-old Cassy physically and mentally drained.

The burden has eased for Cassy since being teamed up with Monash Health’s first Clinical Nurse Consultant with a focus on Venous Thromboembolism (VTE) and Anticoagulation, Clare Jeans.

‘Now, I have someone that I can contact immediately if something happens,’ Cassy said.

‘If I go to the Emergency Department, Clare can call the people for me and explain to them what my situation is, and it makes it a whole lot easier.’

The VTE and Anticoagulation Clinical Nurse Consultant:

• can monitor patients’ frequent blood test results and expedite the process if a patient needs to come into hospital
• may join patients for their appointments with their consultant haematologist
• helps coordinate patients’ prescriptions and changes in medication dose
• can be reached on a direct phone line by the patient during normal business hours

With Clare’s support, Cassy is presenting less often at the ED, requiring urgent care, and the frequency of her relapses and hospital admissions has fallen.

It is a welcome relief for Cassy, a disability support services coordinator, and her partner Rowan, a gardener, who often found themselves dashing to the ED late at night, with work plans the next day thrown into disarray.

‘Clare is fantastic. She has made living with ITP so much easier,’ said Cassy.

As a result of the care provided by the clinical nurse consultant, some ITP patients require fewer onsite specialist appointments – reducing the burden of treatment on them and freeing up time for new patients to be seen from the clinic’s waiting list.

‘We are so happy to have Clare in our team! She has made such a difference in helping coordinate care for our patients, and supporting all of us in our clinic,’ said Professor Erica Wood, Cassy’s treating Consultant Haematologist.

Across Monash Health, 100 people are currently receiving active care for ITP.

Clare assists at least 20 of them each week, as part of her support for people with a range of bleeding and clotting conditions.

‘I have got 19-year-old patients through to 90-year-olds,’ said Clare.

‘Some are trying to get through university exams, others have a family and jobs that they need to attend to. So, the less time that they spend in hospital the better it is for them. I help with that, streamlining care and providing personalised support,’ said Clare.

‘It is very satisfying being able to build relationships with patients so that they trust me and get in contact with me when something goes wrong, and knowing that I am going to be able to help them navigate the next couple of steps.’

We’re looking for exceptional individuals who go above and beyond when it comes to your ITP healthcare.

Have them join the ITP HCP Register.

Learn more by visiting ITPAustralia.org.au/HCP-register/

Source: Monash Health