This information is for people registered as patients with the Norfolk & Norwich University Hospital haemophilia service. If you are not already known to our department, please contact your own haemophilia centre, your GP if you are not registered at a haemophilia centre, or your nearest Emergency Department for urgent bleeding problems.
A leaflet version of this webpage is available to download here
Contacting our centre
Secretaries – For appointments, letters, or to request a call back for non-urgent assistance call 01603 646750
Haematology Specialist Nurses – for assistance with bleeding or other haemophilia related problems that need medical advice, call 01603 646753 (Monday-Friday 08.30 – 17.30)
Emergency assistance for a bleeding problem:
01603 646753 (24 hours)
Outpatient Clinic Appointments
Anyone with a bleeding disorder is advised to have a clinic review at least once per year. Our clinics run on a Monday morning.
For patients with severe bleeding disorders, more frequent reviews are usually needed. ‘Virtual appointments’ by telephone or video are also available.
Emergency treatment for a bleeding problem
During working hours (Mon – Fri 0900-1700) your call will be answered by a Haematology Specialist Nurse. When telephoning please tell us your hospital number (if you have it available) so that we can access your medical records.
A same day review on the Weybourne Day Unit can be arranged for treatment of bleeding problems.
If you have clotting factor treatment at home, please bring the treatment in with you.
Outside working hours, your call will be answered by a member of the Haematology Ward Nursing staff. The Nurse will take your details and discuss your case with the on call Haematology Doctor.
They may arrange admission to the hospital for treatment or to attend the day unit or ward for review.
When contacting us out of hours please note that the nurse answering the call may not be familiar with your condition. Please state clearly that you have haemophilia and require urgent advice from the on call Haematology Doctor.
Attending the Emergency Department (ED)
If you need to attend the ED it is important to inform the staff treating you that you have a bleeding disorder. If possible, contact the Haematology Specialist Nurse in advance so that they can inform the ED of your treatment requirements and alert the Haematology Clinical Team. Haemophilia is a rare disorder. The health care professional treating you in ED will have limited knowledge of your condition and they will usually need to contact the on call Haematologist for treatment advice.
Ensure you show the ED staff your bleeding disorders card which has the details of your condition, and Haematology contact number.
People with bleeding disorders are advised to register with a Community Dentist. Routine dental ‘check ups’ can be performed safely at the dental surgery. If your dentist advises that an invasive procedure is needed (e.g. dental extraction), your dentist will usually refer you to the hospital dental service.
Occasionally it is possible for procedures to be performed by the Community Dentist with treatment for the bleeding disorder provided by the Haemophilia Centre. Please ensure we are informed if an invasive dental procedure is required, either by your Dentist or by you.
What to do if you need an operation
• Most surgical procedures can safely be performed providing that treatment for the bleeding disorder is given before the operation.
• Treatment may also be required for a few days following surgery whilst a wound is healing.
• Ensure that the Surgeon is aware of your bleeding disorder.
• Please contact the Haematology Secretaries or Specialist Nursing staff when you have a date for the procedure.
• An individual plan will be made to treat your bleeding disorder before the operation. This will usually require you to attend the Weybourne Day Unit 1-2 hours before the operation for treatment.
• You may also need to attend daily for a few days afterwards if further clotting factor treatment is needed.
• All vaccinations are arranged by your GP. Vaccinations are not given at the hospital.
• To reduce the risk of the injection causing excessive bruising it is recommended that they are given by the deep subcutaneous injection rather than by the intramuscular route.
• Please inform your Practice Nurse that you have a bleeding disorder when booking the vaccination.
• People who might need treatment with blood products in the future are also advised to be vaccinated against Hepatitis B. If this is required you will be informed at your routine appointment. We will check you have made enough antibodies after you have completed your immunisation.
Patients with severe bleeding disorders who have Haemophilia Arthropathy (joint damage) may find physiotherapy helpful. The Haematology Clinic at NNUH does not have a physiotherapist present in the clinic. If required, an outpatient referral to hospital Physiotherapy Services can be arranged.
The Specialist Haemophilia Centre in Cambridge has a Physiotherapist in their clinic. Referral to the Cambridge clinic can be arranged if required, please let us know if you would be interested.
Travel & holidays
It is important if you are on regular prophylactic (preventative) treatment that you notify us if you are going on holiday so that we can provide you with a letter to help you get through airport security without any problems.
Click for further information on the nearest haemophilia centre – whether you are going on a day trip, UK break or adventure across the world, it is useful to know where the nearest centre is located.
If you have a bleeding problem when away from home, please let the medical team know that you are known to us at NNUH and that they can get further information from us if necessary.
Bleeding disorders alert card
A national bleeding disorders card provided by the National Haemophilia Database (see below) will be issued which contains details of your condition, the emergency contact number and treatment advice. It is recommended that you carry the card at all times. If a replacement is required please contact our department.
Home treatment with clotting factors
For patients on home treatment, please give at least 1 weeks’ notice when placing an order.
Ensure that you have an adequate number of sharps bins, and that full sharp containers are returned for safe disposal.
Referral to the Cambridge Haemophilia Centre can be arranged for anyone who would like routine home delivery of home treatment. All people on home treatment need to ensure treatment is recorded on the Haemtrak system.
National Haemophilia Database (NHD)
To help provide the best possible care, patients attending the Haemophilia Centre are registered nationally with the NHD. An information sheet will be given to you at the time of registration, or can be accessed with this link.
East of England Haemophilia Network
Haemophilia centres in the East of England operate as a network. The lead centre (Comprehensive Care Centre CCC) is based at Addenbrookes Hospital, Cambridge. Some specialist haemophilia services are only available in Cambridge. Depending on your specific needs you may need to be referred to Cambridge for treatment.
The UK Haemophilia Society is a registered charity for people with bleeding disorders. The society website has a range of information and advice for patients and families. Details of becoming a member of the society can be found on the site.
The World Federation of Haemophilia website also contains useful patient information and treatment guidelines.
A similar site with helpful information is also provided by the Canadian Haemophilia Society.