Providing haemophilia care from Truro to Lands End and beyond

Providing haemophilia care from Truro to Lands End and beyond...

With so much focus on the haemophilia care provided by comprehensive care centres (CCCs) it’s sometimes easy to forget that for many people a visit to the haemophilia centre is a distinctly local affair. Few parts of the UK exemplify this better than Cornwall, a large and geographically isolated peninsular where the resident population of 530,000 people can increase by as much as 55% in the summer months. At this year’s HNA meeting, Sarah Johns, haemophilia nurse in Truro...

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news, views and information

Haemnet offers a range of educational opportunities for haemophilia care professionals. These include:

Contemporary Care of People with Bleeding Disorders is a three-day residential, expert-led training course for health care professionals
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Aspire is Haemnet’s bespoke leadership development programme for all members of the multidisciplinary team. ASPIRE is run by trained experts in leadership training
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Haemophilia Nurses' Association Competency Framework

The HNA Competency Framework provides a widely respected guide to the career development of haemophilia nurses
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The Journal of Haemophilia Practice is Haemnet’s open-access journal – a place where all members of the multidisciplinary team can share experience
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skills and expertise

Managing haemophilia is about more than just administering factor treatment. Good all-round care provided by a multidisciplinary team is essential to prevent joint damage and to encourage those with haemophilia to live as near normal lives as possible.

Haemophilia Physiotherapy

Bleeding disorders are associated with specific musculoskeletal consequences. Physiotherapists are the core professionals skilled in assessing joint health and function
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Haemophilia Nursing

Haemophilia nurses support bleeding disorder patients and their carers within the hospital, the community and at home, encouraging active lives and full participation with peers
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Wellbeing

Living with an inherited bleeding disorder is tough. Patients and their carers can benefit immensely from the specialist skills provide by health psychologists and social workers
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with peers and share experience

Haemnet undertakes research studies and projects that will benefit the bleeding disorders community. We receive funding from a range of companies and charitable bodies. Current projects include the following:

Through Transforming Transition, Haemnet is bringing patients and nurses together to develop a nurse-led transition programme
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What’s it like to live with a platelet function disorder? Haemnet is trying to find out through the SO-LIFE study
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The Study Of physical Function In adolescents with haemophilia (SO-FIT) is the largest, multi-centre nurse-led assessment of patient-reported outcome measures yet conducted
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Haemnet is conducting a study in seven European countries aimed at evaluating the impact of bleeding on caregivers of children and young people with haemophilia
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Upcoming Events

Latest News

New human fibrinogen concentrate available

Mar 2, 2017

FibCLOT, a new human fibrinogen concentrate is now available in the UK, offering increased therapeutic choices for patients...

Emicizumab meets study endpoint

Dec 22, 2016

22 December 2016 Prophylaxis with emicizumab reduced the number of bleeds over time compared with no prophylaxis in the...

Elocta and Alprolix gain NHS reimbursement across the UK

Sep 26, 2016

21 September 2016 NHS England has confirmed reimbursement of Elocta® (efmoroctocog alfa) and Alprolix® (efrenonocog...

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Haemophilia Nurses' Association

Haemnet is a nurse-led initiative endorsed by the Haemophilia Nurses Association and supported by Pfizer Ltd, Bayer, Baxter Healthcare Ltd, BPL, Biotest, Grifols, CSL Behring, Octapharma, SOBI, LFB and Novo Nordisk. Sponsors are not responsible for site content.

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