Haemophilia care in London ranks among the best in the world, and people travel from afar to benefit from it.
Each year, around 4,000-5,000 people in the UK (35% of people with severe haemophilia A and B in England) receive their haemophilia care at the London haemophilia centres.
But there’s always room for improvement. Haemnet’s mission is to ensure that excellent care becomes an everyday experience for people with bleeding disorders.
Our London 2020 project aimed to better understand current services, identify examples of effective practice and explore what could be delivered differently in order to make the most of the opportunities that will arise from the changing treatment landscape.
In summer 2017, we undertook a series of 1-2-1 interviews with many of the clinicians from across the multidisciplinary team who provide those services, and conducted a survey among the service users, families and carers who access London services.
London 2020 is a comprehensive consultation designed to better understand current services and inform how London’s haemophilia services prepare for an uncertain future.
Over the next few years we’ll see a wider range of treatment options for managing haemophilia and other bleeding disorders. At the same time, the health service is under pressure to do more for less money. Current government policy is firmly geared towards supporting YOU to be more involved in managing YOUR OWN condition. So Haemnet wants to ensure the voices and insights of service users and their families/carers are heard when decisions are made about the future shape of London’s services.
London 2020 is led by a steering group of doctors and nurses from London haemophilia treatment centres working alongside patient and carer representatives.
The project is funded by Sobi and sponsored by The Haemophilia Society.
We understand how important your personal information is to you. All responses will be anonymised and, in accordance with the Data Protection Act, any contact details you leave will NEVER be shared.
Haemnet is a UK charity and international network for health care professionals who treat people with inherited bleeding disorders.
Haemnet works closely with all members of the haemophilia multidisciplinary clinical team and patient groups to better understand the needs of people with bleeding disorders, so that together we can ensure that excellent haemophilia care becomes an everyday experience.