Haemophilia information resources

Treating patients with inherited or acquired bleeding disorders

The Guy’s and St Thomas' Centre for Haemostasis and Thrombosis holds a wide range of leaflets on bleeding disorders and other information. Please ask a member of staff if you would like further information. However, information can be found on the websites listed below.

This page lists some documentation and useful links to other sites that may be of interest. This does not mean we endorse or accept responsibility for the sites or the information found on them.

Useful links

  • Benefits

    The centre is unable to provide advice related to government benefits, disability allowances, personal independence allowance (PIP) and immigration. However, independent advice can be found from the Haemophilia Society, the Citizens Advice Bureau and GOV.UK.

  • Carers support

    A diagnosed bleeding disorder can put pressure on relatives, partners and friends caring for the patient. If you are caring for someone who has a bleeding disorder, please visit our carers hub and the Haemophilia Society website for more information.

  • Infected blood enquiry

    The Infected Blood Inquiry (IBI) is examining why potentially infected blood transfusions and blood products were given to patients by the NHS in the 1970s and 1980s, the impact on their families, how the authorities responded and the care and support provided to those infected and their families, carers and loved ones (described by the IBI as the affected).

    The Infected Blood Support Scheme supports people historically infected with hepatitis C and/or HIV from NHS blood or blood products. They also help families, civil or long-term partners after the death of someone infected.

  • Medication delivery and recording your treatment

    Most of our patients who require regular treatment will have their treatment products delivered directly to their home. The majority of these deliveries are through a national company called Healthcare at Home. Your factor replacement products can be tracked using the Healthcare at Home tracker application.

    All patients who receive regular treatment with factor replacement products are required by NHS England/the United Kingdom Haemophilia Centres Doctors Organisation (UKHCDO) to record the use of these products on a national database, Haemtrack. Patients are also required to record any episode of bleeding.

  • Surgery

    If you have a bleeding disorder and have been advised, or are intending to undertake any form of surgery you need to inform the medical team at the Centre for Haemostasis and Thrombosis. This includes any minor procedures such as dental work, biopsy or endoscopy. Please provide the centre with any details that you have regarding the nature of the operation as soon as possible. We will usually recommend for your surgery to be undertaken at Guy’s and St Thomas’ to ensure that your bleeding order can be monitored and controlled under  the Comprehensive Care Team. The earlier we are aware of any surgery or procedure the earlier we can provide you with informed advice. If there are any changes to the arrangements of your surgery, please let us know as soon as possible.

    Private surgery

    We do not normally recommend patients with bleeding disorders to have surgery or procedures performed in a private clinic or hospital as we are unable to provide advice or treatment. We would encourage you to discuss this with your consultant or specialist nurse, as they can provide you with advice on whether this is an appropriate route for your surgery.

    Emergency surgery

    If you are admitted into hospital for emergency surgery, you or your family member must make the medical team aware that you have a bleeding disorder and that they should contact the Centre for Haemostasis and Thrombosis for advice.

  • Travel information

    If you are travelling abroad with haemophilia it is always useful to be aware of the nearest haemophilia centre.

    If you are carrying medications it is worthwhile ensuring that you have a travel letter from the centre to ensure that you are not stopped by customs. You should also carry your haemophilia card which was issued from the centre. You may choose to wear a bracelet or pendant which lists your medical details. This gives medical staff the basic information regarding your diagnosis as well as providing the telephone numbers of the centre. MedicAlert is a registered charity providing a life-saving identification system for individuals with hidden medical conditions.

    Please make sure your travel insurance covers your condition.

  • Vaccination advice

    If you have been diagnosed with a bleeding disorder, all vaccinations should be administered subcutaneously (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.

    You should seek advice from the haemophilia nursing staff if there is any uncertainty regarding vaccinations.

 

 

 

Related Items

Displaying 1 to 1 of 1

Bleeding disorders patient information pack

Download our information pack (PDF 172Kb) about bleeding disorders.

PALS

Our Patient Advice and Liaison Service (PALS) offers you support, information and assistance.

Tel: 020 7188 8801 Email: pals@gstt.nhs.uk

Emergency and out-of-hours services

If you have an urgent clinical problem outside of normal clinical hours (9am to 6pm, Monday to Friday), please call the hospital switchboard on 020 7188 7188 and ask for the on-call haematology registrar.