Your haemophilia care team
Your haemophilia care team
A haemophilia care team is made up of different types of healthcare professionals that each offer specific skills and expertise. Together they support the different needs of people with haemophilia to ensure you get the best care.
Understanding the roles of these experts will help you know the best source for answers and advice about your health or treatment. Remember, you may not need to see all of these healthcare professionals, but your haematologist can refer you to a specialist if needed.
A healthcare professional who specialises in diagnosing, treating and managing bleeding conditions like haemophilia. As part of a healthcare team, the haemophilia doctor (haematologist) will create a personalised treatment plan, prescribe treatments and review and talk through test results. They will also provide referrals to other specialists if needed.
The haemophilia nurses are the healthcare professionals to contact for most issues. They support people with haemophilia in managing their treatment, such as teaching how to self-infuse.1 During appointments, a nurse may help carry out physical exams and blood tests, if these are needed.
A healthcare professional who tests joints and muscles to measure how well they move. Physiotherapists use and teach techniques that can help manage joint and muscle problems.2,3 For people with haemophilia, physiotherapy can help restore joint movement and function, and reduce the risk of injury in the future.2,3
A healthcare professional who can help people with haemophilia cope with the emotional challenges they may be facing. Psychologists are trained to emotionally support people with their worries or concerns and to help improve their mental wellbeing.4
A healthcare professional who specialises in the diagnosis, prevention and treatment of bone, joint, muscle, ligament and tendon problems. Orthopaedic surgeons treat people with haemophilia who have severe joint problems and need surgery.5
A healthcare professional who educates individuals, partners and families on the likelihood of passing a genetic condition (like haemophilia) to their children. Genetic counsellors can answer questions around family planning and may also manage genetic tests during pregnancy.6
In addition to those listed above, you may also have other healthcare specialists involved in your care depending on your local centre (such as a chronic pain specialist, dentist or occupational therapist).7
References: 1. The Haemophilia Society. What to expect from your treatment centre. Available at: www.haemophilia.org.uk/bleeding-disorders/treatment-centres/expectations-treatment-centre (accessed August 2020). 2. Haemophilia Foundation Australia. Glossary. Available at: www.haemophilia.org.au/hfa/media/documents/haemophilia%20folder%20-%20newly%20diagnosed/newly-diagnosed-chapter-8.pdf (accessed August 2020). 3. NHS. Physiotherapy. Available at: www.nhs.uk/conditions/physiotherapy (accessed August 2020). 4. Haemophilia Wales. What is a psychologist doing in the haemophilia centre? Available at: www.haemophiliawales.org/psychology-haemophilia (accessed August 2020). 5. Rizzo AR, et al. Orthopaedic procedures in haemophilia. Clin Cases Miner Bone Metab. 2017;14(2):197–199. 6. World Federation of Hemophilia. Genetic counselling for haemophilia – revised edition 2015. Available at: www1.wfh.org/publications/files/pdf-1160.pdf (accessed August 2020). 7. World Federation of Hemophilia. Guidelines for the management of hemophilia – 2nd edition 2012. Available at: www1.wfh.org/publications/files/pdf-1472.pdf (accessed August 2020).
Download ‘My Voice, My Care’ to understand how to get the most out of conversations with your care team.