Bleeding and clotting disorders patient information
Find out what to expect when you come to hospital for your appointment at the bleeding and clotting disorders service.
Before your appointment
You will receive a letter before your appointment within seven days of your referral being received by the hospital. You are welcome to bring a relative, close friend or carer with you to your appointment. You are also welcome to ask for a chaperone and we will endeavour to provide one for you.
When you come to your first appointment, please bring any medication you are currently taking. If you are taking warfarin, please bring your 'yellow book'. Please also remember to check your appointment letter for anything specific you have been asked to take with you. In addition, it would be helpful if you could bring the following:
- Your full address and telephone number(s)
- Your appointment card and appointment letter
- Your GP’s name and address
- Money to pay for any prescriptions, or an exemption card
- A list of questions you may want to ask your consultant
During your appointment
When you arrive at the clinic specified in your appointment letter, please report to the administrator to check in. They will ask to see your appointment letter and check that your contact details are correct. You can expect to be seen within 30 minutes of your arrival time.
Please note that we are a teaching hospital, so medical students may be present for some appointments. If you do not wish to have them in the room please let the nurse or doctor know and the students will be asked to step outside.
At your first appointment you will be examined by one of our doctors who may need to conduct further tests. You can expect that a blood test(s) will be required during your appointment. Your doctor will tell you that they suspect the issue may be, and what the tests are aiming to establish. You can expect to receive a follow-up appointment to review the results and identify the best treatment for you, if any is required.
After your appointment
You should expect to have blood samples taken after your consultation. You will likely be given another appointment to discuss the results of the tests taken at your first visit. If the consultant decides that you need to be seen again please see the receptionist before you leave to book a follow-up appointment. All registered patients with a bleeding disorder will be seen at least once a year (if they have mild haemophilia) or twice a year (if they have severe haemophilia).
Patient passport (patient access card)
Some of our patients are issued access card ‘passports’ for our service. If you require urgent advice about your condition, please refer to the relevant phone number in your passport.
Our patients will often need a travel letter to explain to airport and customs staff why they are carrying treatment products (such as prescribed drugs, needles and syringes) and the serious implications of not carrying these. If your haemophilia consultant or specialist nurse has advised that you need a travel letter, please contact the centre at least two weeks before you travel.
Travelling with clotting factor
When travelling by air it is strongly advised that you carry your own treatment products, equipment and medication onto the aircraft as hand luggage.
Emergencies in the UK
In the event that you require treatment whilst away from home, a directory of UK haemophilia treatment centres can be found on the United Kingdom Haemophilia Centres Doctors' Organisation (UKHCDO) website.
A directory of haemophilia treatment centres around the world can be found on the World Federation of Haemophilia (WFH) website.
A directory of centres in Europe can be found on the European Haemophilia Safety Surveillance website.
Further guidance on travelling can be found on the WFH website under ‘tips for travellers’ and on the Haemophilia Society website.
Some types of bleeding disorder require vaccinations to be given subcutaneously which means the injection is given just under the skin rather than deep into the muscle. This is because deeper injections into muscle can cause bleeding. If this is the case for you, you can still get your vaccinations via your GP practice nurse, including the annual flu vaccination and all travel vaccinations. Please check with the nurses whether the vaccination you require can be given under the skin or whether additional treatment will be needed.
Your doctor may recommend that you are 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.
If you have any questions regarding vaccinations please contact the haemophilia specialist nurses.
Dental care and treatment
Preventing dental disease is very important, particularly in patients with bleeding disorders for whom dental diseases and their treatment may cause serious bleeding. You should have regular dental reviews and see your dentist every six months.
You should tell us about any planned dental treatment at least two weeks before any dental procedure. In some cases, we may recommend that the treatment is carried out in hospital and refer you to a specialist unit so that your dental work and your bleeding disorder can be managed together. However, you may not need to attend a hospital for your dental treatment. We will be able to advise you on this, refer you as necessary and provide any treatment required for your bleeding disorder if you are receiving treatment from your dentist.
Home delivery of clotting factor
Home delivery of clotting factor is available to all patients who are on the home treatment programme. If you are using the home delivery programme you need to record your clotting factor usage on the Haemtrack phone app. The app enables you to record all treatments as they occur and allows the haemophilia team looking after you to see up-to-date therapy information to help monitor and improve your care. The centre will explain how to use the app.
Please speak to one of the haemophilia specialist nurses if you have any queries about your home delivery.
Planned surgery and procedures
You will need to tell us about any planned surgery or procedures. Please contact the haemophilia specialist nurses at least two weeks before the procedure date with details of the procedure.
Please speak to us if you are intending to have a procedure done in the private sector or abroad.
Benefits and financial help
If you have been diagnosed with a bleeding disorder you may be entitled to financial help. The haemophilia centre will support patients who need to make applications for benefits. Our social worker is also able to support patients if they wish to appeal a decision where they have been refused a particular benefit. Find out more via the Haemophilia Society website.
We have a specialist social worker who can provide practical information and support as well as advising patients, relatives and carers about:
- education and employment
- social services
Please let one of the specialist haemophilia nurses know if you would like to speak to the social worker.
Patients can be referred to the specialist family counsellor/therapist who is based at the Royal Free Hospital.
Patient information leaflets
- Dental services for patients with inherited bleeding disorders (IBD)
- Desmopressin (DDAVP) for people with inherited bleeding disorders
- Mild or moderate haemophilia - how will it affect my life?
- Surgical procedures for people with inherited bleeding disorders
- Telephone clinic appointments for people with inherited bleeding disorders
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