Katharine Dormandy Haemophilia and Thrombosis Centre

Our haemophilia counselling service is run by family therapists and provides a holistic approach in caring for people with bleeding disorders and their families. The service is the longest operating service of its kind in the UK. 

The team provide a range of psychological care, including psychological assessments for people with specialised rare bleeding disorders. 

Assessments lead to either short-term counselling work (such as one to one, couples, family or group) or, using an early warning system, a referral to appropriate services within the community.

In addition, our service provides a specialised inherited bleeding disorder genetic and reproductive counselling, through the genetic counselling clinic. 

Service users include adults and young people with rare inherited bleeding disorders (and affected family members for haemophilia, such as carriers of the condition), and patients with von Willebrand disease.

Part of the outpatient service operates alongside a patient’s medical reviews, whereas other assessments/appointments are booked independently.

Genetic counselling service

The genetic counselling service is an integrated service involving lead consultants in both genetic and reproductive medicine, the departmental genetics laboratory and the genetics and reproductive counsellor. 

Patients who use the service range from teenage obligate carriers who want to talk through the facts of haemophilia inheritance, to adult carriers and/or men with haemophilia and their partners who wish to explore the diagnostic options available to them.

Patients are usually referred by their GP or their consultant. 

Our joint haemophilia and obstetrics and gynaecology clinic, held every other week, aims to provide women with comprehensive care to improve their quality of life. 

The clinic provides all aspects of obstetric and gynaecological care including pregnancy and delivery plans, preconceptional care and genetic counselling, which have helped with early carrier detection and discussions of reproductive choices with the family.

During pregnancy, options of prenatal diagnosis and preimplantation genetic diagnosis are discussed and offered onsite or by referral.

We help our patients create a management plan and mothers are cared for in collaboration with their local maternity unit.

Advice and treatment are also provided for women who experience heavy periods due to bleeding disorders.

The clinic is renowned nationally and internationally and receives an increasing number of referrals from clinicians across the UK. 

We have clinicians from across the world visit to help develop this service in their hospitals. We also provide an integral part of training for the Royal College of Obstetricians and Gynaecologists. 

Patient surveys are regularly conducted to improve care and accommodate the needs of our patients.

We have a wide range of outpatient clinics:

Genetic counselling and diagnosis clinic

The service has a genetic counselling clinic, held monthly, which provides genetic counselling, testing and diagnosis for adults and young people affected by inherited bleeding disorders and their families.

HIV clinic

The HIV clinic is a combined clinic, held every two to three months, providing care and management support for haemophilia patients with HIV infection.

Inherited and acquired bleeding disorder clinic

Our inherited and acquired bleeding disorder clinic is a multidisciplinary comprehensive clinic which see patients with haemophilia, von Willebrand disease and rare bleeding disorders. 

We run clinics for adults and adolescents (a transition clinic).

Liver clinic

The liver clinic is a combined clinic providing care for patients affected by hepatitis C and haemophilia, held every two months. This includes assessment, discussion of management options and the initiation of monitoring treatment.

Musculoskeletal clinic

The musculoskeletal clinic provides the regular assessment of joint and muscle function for patients with severe haemophilia, to identify if they need surgery or physiotherapy. 

Patients with other bleeding disorders who need orthopaedic assessment and surgery may also be referred to this clinic. 

Orthopaedic surgeons, physiotherapists and haematologists work together to see patients with haemophilia arthropathy. 

This clinic also provides services such as radioactive synovectomies, arthrodesis and joint replacements.

Psychosocial support

Patients needing psychological support can self-refer to this service.

Underlying bleeding and thrombotic disorder clinic

We run regular clinics for investigation into underlying bleeding and thrombotic disorders.

Other clinics and services

In addition to the above, we also run:

• obstetrics and gynaecology clinic 
• walk-in physiotherapy services
• nurse-led telephone clinics for patients with mild bleeding disorders
• nurse-led community services for elderly patients and those with difficult mobility.

You may find the following resources useful when looking for more information on haemophilia.

• World Federation of haemophilia: for more information and treatment guidelines. 
• UK Haemophilia Centre Doctor’s Organisation 
• Haemophilia Society

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