Children's Haemophilia Service patient information
Advice
Please contact us if your child has:
- bleeding symptoms
- banged their head
- pain
- difficulties when giving factor treatment.
- a red or sore Hickman line / Portacath site / Picc line
- a temperature of 38°C with a line in situ.
Please also call if you are unsure about their medicines.
Seek medical help immediately if you are concerned about your child's condition.
Please go to your nearest hospital and alert us to your attendance.
Paediatric Haemophilia Nurses
Tel: 01865 226562 9.00am - 5.00pm weekdays or
Bleep 5926 via JR Switchboard 0300 304 7777
On-call Haematology Registrar
(Out of hours / weekends and Bank Holidays)
Ask JR Switchboard 0300 304 7777 to put you through
Medicines to take home (TTOs)
The PHU email address can be used to order repeat prescriptions for your child, before an arranged appointment, or to ask non-urgent questions.
Please allow three working days for repeat prescription requests.
Email: paediatric.haemophiliaclinic@ouh.nhs.uk
Community services
Shared care hospital
We work closely with our shared care hospitals and their community teams. They may be able to support you with routine treatment and we will liaise with them where this is needed.
You may also need to attend them for urgent care and the link consultant will be aware of your child and you should have an open access arrangement in place. Contact details can be found below. However should you attend these hospitals please also contact us to let us know so we can liaise with them regarding your care.
Shared care centres
Home therapy
Haemtrack
Haemtrack is a secure therapy recording system, connecting patients and clinicians through the Haemtrack phone apps and website.
Haemtrack enables patients to record all therapies as they occur, and allows clinicians to see up-to-date therapy information to help monitor, optimise and improve patient care.
Dental care
If you have been diagnosed with a bleeding disorder we generally advise to see a dentist locally every six months as a preventative measure rather than an emergency. It is very important that you receive regular dental care.
Prevention of dental problems
Everybody is at risk of dental problems. However, the management of certain types of dental disease may cause bleeding. Therefore, preventing dental disease is very important. The most common diseases are periodontal disease (gum disease), dental decay and tooth wear.
Dental treatment
The majority of your treatment will not cause significant bleeding and may be carried out by a general dental practitioner (dentist) or within the public dental service. However, if extractions are needed you should contact us for advice, and a referral will need to be made to the East Oxford Dental Service.
Dental Care for Children with a Bleeding Disorder (pdf)
If you have any questions about your dental treatment contact the Children's Haemophilia Specialist Nurses.
Vaccinations
If you have been diagnosed with a bleeding disorder, all vaccinations should be administered subcutaneously - that is just under the skin rather than deep in the muscle. You can obtain all your vaccinations via your GP practice nurse - this includes the annual flu vaccination and all travel vaccinations.
Your doctor may recommend that you consider being vaccinated against hepatitis A and B, if you need plasma-derived factor products (made from donated human blood) regularly as part of your treatment. These vaccinations should also be given subcutaneously at your GP practice.
Advice regarding administration of subcutaneous injections is given to all GP practice nurses in Chapter 4 of the green book.
If you have any questions regarding vaccinations, contact the Children's Haemophilia Specialist Nurses.
Benefits
If you have been diagnosed with a bleeding disorder, you may be entitled to financial help.
Last reviewed:06 February 2023