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The TTP specialist nurse: an advocate for patients and professionals

21 March 2024
Volume 33 · Issue 6


Thrombotic thrombocytopenic purpura (TTP) is a rare and life-threatening blood disorder with a mortality rate of over 90% if left untreated, multiple long-term complications for survivors, and a lifelong risk of relapse. There is a valuable role for the clinical nurse specialist in both the acute and long-term care of patients with TTP. Historically part of the team caring for patients with TTP, specialist nurses have played a vital role in co-ordinating and facilitating treatment for patients, promoting patient advocacy, supporting continuous service improvement, and delivering education to the wider clinical team to disseminate best practice. In 2021, the TTP specialist nurse role was commissioned within the NHS England National Service Framework for TTP Specialist Centres. This article aims to appraise the role of the TTP specialist nurse and share the multidimensional reach of the role in achieving better outcomes for patients with TTP.

In the context of rare disease, the specialist nurse is recognised as having an essential role in ensuring that patients receive an accurate and timely diagnosis coupled with appropriate treatment (Knight, 2011; Stanback, 2014). The role of ‘care co-ordinators’ in providing a positive care experience for patients with rare diseases, to reduce the sense of isolation often felt by this group, has been emphasised in recent reports (Morris et al, 2022; Genetic Alliance UK, 2023. Specialist nurses play a vital role in reducing the number of hospital stays for patients with rare diseases by recognising symptoms at an early stage, ensuring that patients adhere to therapy and by providing psychosocial support (Pati, 2010).

A review of the literature reveals that there has been little previous work to appraise the role of the specialist nurse caring for patients with thrombotic thrombocytopenic purpura (TTP). Harrison (2021) described the treatment of TTP patients in a single centre over the past 10 years. In that article, Harrison (2021) considered the role of the specialist nurse in caring for TTP patients and argued that one of the key roles is to raise awareness about the condition, and to educate and support other nurses to look after this patient group.

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