National & Local Support Groups
Haemophilia Society - The Haemophilia Society – Together For Life | The Haemophilia Society
World Federation of Haemophilia - Home – WFH - World Federation of Hemophilia
Global Treatment Centre Directory - Find local support – WFH - World Federation of Hemophilia
Haemophilia Centre Locator - hclocator.org/centrelocator/
United Kingdom Haemophilia Centres Doctors Organisation - Patient Information – UKHCDO
Emotional Wellbeing
The webpage below provides information about what mental health is and what support is available
Protecting and improving your mental wellbeing | Nottinghamshire County Council
If you need urgent crisis support, call the Nottinghamshire Mental Health Crisis Line on 0808 196 3779 (24/7) or the Samaritans on 116 123 (24/7)
Sexual Health
NUH provide a free and confidential Sexual Health Service. For more information visit: Sexual Health Services | NUH
For more information around Sexual Health & Bleeding Disorders:- Sex and bleeding disorders | The Haemophilia Society
Home Therapy
Haemtrack is a secure therapy recording system, connecting patients and clinicians through the Haemtrack web app. 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.
Haemtrack – Home Therapy Support Service (mdsas.com)
Dental Care
Good dental care is essential for everyone. If you have a bleeding disorder, looking after your teeth, mouth and gum is especially important.
Dental care for adults with a bleeding disorder | The Haemophilia Society
Social Care
Adult: Adult social care | Nottinghamshire County Council
Children: Children's social care | Nottinghamshire County Council
Carers
Support for carers | Nottinghamshire County Council
Adopting a Healthy Lifestyle
Many factors affect our health and wellbeing including finances, feeding our families, heating our homes, mental health worries, physical health worries and community or family support.
Here at NUH we have a Health Improvement team in Urgent and Emergency Care with dedicated Link Workers based in the QMC Emergency Department to help recognise patients needing extra help to live a healthier life aiming to prevent long term illness - we want to embed a culture of health promotion and injury / disease prevention in our pathways.
You can access the resources here to support you to make lifestyle choices which will elp you live longer, happier, healthier and more independent lives. At NUH we want to ensure everyone has access to support available in Nottinghamshire and ensure all the information you need to make the first steps is easily available here in one place
General Health Information | NUH
Travel Advice
Please find the Travel Information Leaflet for patients with Bleeding Disorders in 'Useful Links'.
Also for more Travel Advice:
Travel | The Haemophilia Society
EUHANET hclocator.org/centrelocator/
Find local support – WFH - World Federation of Hemophilia
Vaccination Advice
We usually advise that people with bleeding disorders receive vaccines as an injection under the skin (sub-cutaneous). However, the COVID-19 vaccine must be given as an injection into the muscle (intra-muscular).
Anyone who has had an injection into a muscle could develop a bruise within the muscle (haematoma) afterwards. This risk may be higher in people with bleeding disorders.
Please tell the person giving you the vaccine that you have a bleeding disorder and show them your alert card and this leaflet.
People with the following diagnoses DO NOT need to take any additional precautions before they have the vaccine:
- Haemophilia A and B with factor level above 10%
- Haemophilia A on Emicizumab (Hemlibra)
- Acquired haemophilia with normal factor 8 level.
- Mild bleeding disorders—including mild von Willebrand disease; low von Willebrand factor; mild platelet function disorders; dysfibrinogenaemia; clotting factor deficiencies with factor levels above 10%
People with the following diagnoses WILL need to have treatment before their vaccination:
- People with severe or moderate haemophilia who can give their own factor treatment at home need to have a dose of factor concentrate before their vaccination
- If you are on prophylaxis, please take your usual factor prophylaxis dose on the day of your vaccination.
- If you give treatment on demand at home, please take your mild bleed dose of factor before your vaccination.
- Haemophilia A or B with factor levels less than 10%
- Severe (Type 3) von Willebrand disease
Please call us to discuss what you need.
People with the following diagnoses MAY need to have treatment before their vaccination:
- Von Willebrand disease with factor levels less than 10%
- Other factor deficiencies with factor levels less than 10%
- Bernard Soulier syndrome
- Glanzmann’s thrombasthenia
Please call us to discuss if you need any treatment.
Further Support
Benefits
Benefits - GOV.UK (www.gov.uk)
Benefits | The Haemophilia Society
Immigration Queries & Advice
UK Visas and Immigration - GOV.UK (www.gov.uk)