Frequently Asked Questions
Receiving a diagnosis can leave patients and their families with many unanswered questions.
Many want to know how to find information, connect with other people living with a bleeding disorder, and get support.
Here are answers to some frequently asked questions about living with a bleeding disorder:
Frequently asked questions
The NHS Blood Service states, “You must not donate if you tend to bruise easily, if it takes longer to stop bleeding, or if you have been treated with blood-derived coagulation concentrates such as Factor VIII”. The NHS Blood Service helpline can answer questions about bleeding disorders and carriers. They’re available Monday to Friday, 9am to 5pm at 0300 123 23 23.
You can find more information on the Give Blood website.
The rules may be slightly different in other parts of the UK. Click on the following links to get specific information on the rules in Wales, Scotland and Northern Ireland.
Exercise and fitness should be part of your everyday routine, regardless of your bleeding disorder. Exercising helps to keep your bones healthy and strong. It strengthens your muscles, and strong muscles help to support your joints and make injury less likely.
However, there are some precautions you have to take, especially if you have a severe bleeding disorder. Contact your haemophilia centre, as they can help you by advising you of what protection, if any, is needed for your chosen fitness plan.
Please also refer to our A-Z guide to sport and physical activity for children with a bleeding disorder
Getting a tattoo or piercing if you have a bleeding disorder is a personal decision with potential risks. Here’s what you need to consider:
Risks:
Increased bleeding: Tattoos and piercings create open wounds, which can bleed more heavily and for longer in people with bleeding disorders.
Infection: The risk of infection is higher for anyone getting a tattoo or piercing, but it’s especially important to be vigilant if you have a bleeding disorder.
Delayed healing: Healing may take longer than usual.
Before you consider getting a tattoo or piercing:
Consult your haemophilia centre: They can assess your individual situation and advise you on the risks and precautions. They may also recommend specific treatments before and after the procedure.
Understand the risks: Be fully aware of the potential complications and be prepared to manage them.
Choose a reputable artist/piercer: Find someone experienced and knowledgeable about working with people with bleeding disorders. Ensure they follow strict hygiene and sterilisation protocols.
Aftercare: Follow the aftercare instructions carefully to minimise the risk of infection and complications.
It’s important to be fully informed about the risks and take necessary precautions to ensure your safety.
All NHS prescriptions are free if you live in Scotland, Wales or Northern Ireland.
You can get free NHS prescriptions in England if, at the time the prescription is dispensed, you:
are 60 or over
are under 16
are 16 to 18 and in full-time education
are pregnant or have had a baby in the previous 12 months and have a valid maternity exemption certificate (MatEx)
have a specified medical condition and have a valid medical exemption certificate (MedEx)
have a continuing physical disability that prevents you from going out without help from another person and have a valid medical exemption certificate (MedEx)
hold a valid war pension exemption certificate and the prescription is for your accepted disability
are an NHS inpatient
If you live in England, you cannot cross the border into Wales, Scotland, or Northern Ireland to get a free NHS prescription. Free NHS prescriptions in these countries are only available to residents or people who are registered with a GP within one of these countries.
You can apply for a medical exemption certificate if you have one of the following medical conditions:
a permanent fistula (for example, caecostomy, colostomy, laryngostomy or ileostomy) which needs continuous surgical dressing or an appliance
a form of hypoadrenalism (for example, Addison’s Disease) for which specific substitution therapy is essential
diabetes insipidus and other forms of hypopituitarism
diabetes mellitus, except where treatment is by diet alone
hypoparathyroidism
myasthenia gravis
myxoedema (that is, hypothyroidism which needs thyroid hormone replacement)
epilepsy which needs continuous anticonvulsive therapy
a continuing physical disability which means you cannot go out without the help of another person
cancer and are undergoing treatment for either – cancer – the effects of cancer – the effects of cancer treatment
These are the only conditions that entitle you to a medical exemption certificate. If you’re not sure about the name of your condition, speak to your doctor.
Read more about who can get free NHS prescriptions.
Use the eligibility checker.
Find out more about medical exemption certificates.
Prescription prepayment certificate (PPC)
If you know you’ll have to pay for a lot of NHS prescriptions, it may be cheaper to buy a prescription prepayment certificate (PPC) – effectively a prescription “season ticket”.
There are two main types of PPCs:
Standard PPC covers all your NHS prescriptions, including dental ones. It costs:
£31.25 for 3 months
£111.60 for 12 months (you can also pay in 10 monthly instalments of £11.16)
HRT PPC: This is specifically for hormone replacement therapy (HRT) medications. It covers certain HRT medications for a flat price of £19.30, valid for 12 months.
It’s quick and easy to buy a PPC online. The PPC will start from the day you submit your application unless you request a different start date, but the start date must be within 1 month before or after the date of your application.
England Infected Blood Support Scheme (EIBSS)
EIBSS support people historically infected with hepatitis C and/or HIV from NHS blood or blood products in England with a lump sum and ongoing support payments. They also help families and civil or long-term partners after the death of someone infected.
EIBSS also help by providing beneficiaries with free Prescription Prepayment Certificates.
To apply for a free 12-month prescription prepayment certificate (PPC), you must be registered with EIBSS.
Disclaimer: The content of this page has been provided by nhs.uk and is for general information only. It is subject to change without notice.
Can I get life insurance if I have a bleeding disorder?
Yes, you can secure life insurance if you have a bleeding disorder. Many people assume that life insurance is unaffordable or too difficult to obtain if you have a pre-existing medical condition or a health issue. However, this is not always the case.
Your monthly premiums may be higher if you have a bleeding disorder, as insurers may classify you as high risk, meaning you are more likely to claim on your policy. However, by comparing quotes and exploring different options in the market, you can find affordable life insurance that meets your needs.
What is life insurance?
Life insurance provides your loved ones a financial safety net should anything happen to you. It’s particularly important to have a policy if you have a partner and/or children who depend on your income to cover essential costs, such as mortgage payments and bills.
You can choose from several different policies, the main options being:
Term life insurance (level or decreasing)
Whole of life insurance
Over 50 life insurance
With term and whole-of-life insurance, you’ll need to disclose that you have a bleeding disorder, which could affect your premium cost.
For over 50s life insurance, you won’t need to disclose your medical condition, but you’ll need to be aged 50 – 80 (or 85 with some insurers) to be eligible.
Do I need to tell insurers about my bleeding disorder?
Yes, it’s important to tell insurers about all pre-existing or current health issues when applying for life insurance, otherwise you run the risk of your policy being invalid (excluding over 50 life insurance policies).
Not telling the insurer about your condition is called non-disclosure, which could invalidate your policy, preventing a future payout. This means all your premiums would be wasted, so it’s not worth being dishonest on your application. With no payout, your loved ones won’t be financially covered.
If you already have a policy and have developed a bleeding disorder since you may want to inform your insurer, but it most likely won’t affect your policy or premium costs. Developing a medical condition won’t affect the validity of an existing life insurance policy, either.
How can you find the best life insurance providers for people with bleeding disorders?
Shopping around and comparing quotes from different providers is the best way to find the right life insurance policy. This is because all insurers will assess your application differently and employ different underwriting processes. However, if your condition is severe, you may need to go through a specialist provider, such as MetLife or The Exeter.
The easiest and fastest way to compare quotes is to use an FCA-regulated, fee-free broker. A broker can access a wide range of standard and specialist providers, allowing them to match your application with the most suitable ones.
How much does life insurance cost if I have a bleeding disorder?
Life insurance is likely to be more expensive when having a pre-existing health issue, but this doesn’t mean you can’t find an affordable price. By comparing quotes and exploring your options, you may find a policy in your budget suitable to your unique needs.
Specialist life insurance providers are more likely to accept people with pre-existing medical conditions and for a more reasonable price over the standard insurance companies, who may charge more or decline an application (depending on the severity of your condition).
What questions will I be asked about my condition?
When filling out your life insurance application form, you’ll be asked about the following as standard:
Health & wellbeing
Age
Weight/BMI
Lifestyle (drinking habits, smoking status and hobbies)
Occupation
Policy type
Length of cover and level of cover
Once you’ve disclosed that you have a bleeding disorder, you may also be asked the following questions:
What type of blood disorder do you have?
When were you diagnosed?
How severe are your symptoms?
Are you taking any medication or undergoing any treatment?
Do you have any other health conditions or complications?
Insurers will then calculate your life insurance premium using all this information.
Will I need to have a medical assessment?
A medical exam is not always required; whether you need one can depend on the severity of your condition and the specific insurer. While it’s relatively uncommon, insurers do have the right to request a medical assessment if they deem it necessary.
Insurers are more likely to request a medical report from your GP if they require more information about your health. Although, they cannot request a medical report from your GP without your permission.
If you do have to undergo a medical exam, the insurer will cover the cost and it will be arranged for a time and date that suits you. This excludes over 50s life insurance applications as medical information is not required. What if I am declined life insurance due to my bleeding disorder?
Even if you have been declined cover, this does not mean you’re unable to secure a policy. There may still be suitable options available for you. For example, if you’re over 50, you could secure an over-50s policy as no medical questions are asked (your bleeding disorder would not affect the premium cost).
All insurers have different underwriting criteria. It does not mean you will be declined every time if you have been declined previously. The best thing to do is contact a life insurance broker who can provide you with more options and insurers most likely to accept your application.
How to secure affordable life insurance with a bleeding disorder
By researching and leading a healthy lifestyle, you should be able to find a life insurance policy that’s suitable for you and at a reasonable cost. Having life insurance in place can be vital if you have a family who rely on you financially, so don’t be put off taking out a policy due to your bleeding disorder. Additionally, premium prices increase as you get older, so it’s important to secure coverage sooner rather than later.
Here are some resources that can provide more information:
The Insurance Surgery: https://www.the-insurance-surgery.co.uk/medical-conditions-life-insurance/haemophillia-insurance/
Cura Insurance: https://www.curainsurance.co.uk/
Sources:
https://www.reassured.co.uk/life-insurance/life-insurance-with-pre-existing-conditions/
Health insurance is also called medical insurance, private medical insurance or private health insurance. They’re all the same thing.
It is difficult to get health insurance as many insurance companies view having a bleeding disorder as a high risk pre-existing medical condition. This is because you will need ongoing and regular treatment to help you manage it rather than short term treatment to cure it.
Most insurers count any condition you have had symptoms or treatment for in the past five years as pre-existing, even if it was diagnosed more than five years ago. You have to provide your insurer with extensive details of your medical history. You will need to declare that you have a bleeding disorder for which you are taking medicine and have seen a hospital specialist.
If you have a bleeding disorder, you can get critical illness cover in the UK. While you may be considered a higher risk, many insurers offer coverage for people with pre-existing medical conditions, including bleeding disorders.
Here are some things to keep in mind:
Disclosure is key: When applying for critical illness cover, be upfront about your bleeding disorder. Withholding information can invalidate your policy.
Premiums may be higher: Due to the increased risk, your premiums may be higher than those without a pre-existing condition.
Some conditions may not be covered: Not all critical illness policies cover all conditions associated with bleeding disorders. Read the policy carefully to understand what is and is not covered.
Shop around: Different insurers have different underwriting criteria. Comparing quotes from multiple providers can help you find the most affordable and comprehensive coverage.
Here are some resources that can provide more information:
The Insurance Surgery:
Money Helper
iamInsured:
It is highly recommended that you consult with an insurance broker or advisor specialising in medical conditions to get tailored advice and help you find the most suitable Critical Illness cover for your specific needs.
This is for informational purposes only. For medical advice, consult your haemophilia centre.
Some charities collect surplus healthcare supplies in the UK and send regular consignments to healthcare units worldwide. They would greatly appreciate your supplies.
The products must be:
12-18 months before the expiry date
in sealed sterile packaging
Send your supplies directly to:
Inter Care (Medical Aid for Africa)
46 The Half Croft Syston Leicester LE7 1LD
Telephone: 0116 269 5925 (Office is open 9am – 4.30pm, Monday to Friday)
Some medicines, herbal products, homeopathic medicines and dietary supplements can interfere with platelet function or clotting and may delay healing.
If you have a bleeding disorder, talk to your haemophilia centre before taking:
Medicines containing Aspirin
Non-steroidal anti-inflammatory drugs (NSAIDs). Sometimes they are called ‘topical non-steroidal anti-inflammatory drugs’ or ‘topical anti-inflammatories’. They contain anti-inflammatory medicine such as ibuprofen, diclofenac, felbinac, ketoprofen, piroxicam or naproxen etc and come in various brand names.
Pain relief gels containing NSAIDs e.g. voltarol, ibuprofen, ibuleve, nurofen, deep relief and deep heat
Analgesic creams, rubs, and sprays containing NSAIDs.
Blood thinners such as warfarin and heparin.
Other medicines that claim to treat bleeding, bruising or improve clotting.
Homeopathic Medicines and Other Dietary Supplements
While every effort has been made to include as many homeopathic medicines and dietary supplements as possible, some may be missing. Medicines and supplements that affect platelet function or clotting include
Arnica Montana
Capsules of fish oil containing omega-3 fatty acids. (Eating fish as part of your diet should not cause a problem.)
Vitamin E
Chondroitin and Glucosamine
Evening primrose oil
St. John’s Wort
Herbal Supplements and Herbal Extracts
While every effort has been made to include as many herbal drugs as possible, some may be missing. Herbal products that affect platelet function or clotting include
Baical Skullcap Root (Scutellaria Baicalensis Georgi)
Black Cohosh
Bromelain
Cat’s Claw
Chinese Agrimony (Agrimonia Pilosa)
Dan Shen (Salvia miltiorrhiza)
Feverfew
Flax seed
Garlic Capsules
Ginger (not dried ginger)
Ginkgo Biloba
Ginseng (Asian)
Red Chili Pepper (Capsaicin)
Saw Palmetto (Serenoa Repens)
Willow Bark
Medicine when you have a cold
Many medicines sold for colds have ibuprofen, aspirin and naproxen in them, which you should not take if you have a bleeding disorder. Paracetamol and codeine preparations do not interfere with blood clotting and are therefore suitable to use.
If you are uncertain about whether any medication may affect platelet function or clotting, check with your haemophilia centre before taking it. You can also ask your local pharmacist for advice if you are unsure about what medication contains NSAIDs.
What should I do with my expired or unused factor concentrate?
You should return any out-of-date or unused stock to your haemophilia centre.
Never give your factor to someone else to use – prescription medication cannot be interchanged. Clinicians need to know how much factor you are taking and this needs to be accurately monitored and recorded through Haemtrack. If there was a batch recall, clinicians need to know who has taken the treatment for their safety. There are also health risks, for example, someone taking donated factor, which they have never used before, could have an anaphylactic reaction, which can be life-threatening.
Donating factor to developing countries is something the Haemophilia Society has tried very hard to organise, given the desperate need for factor in some places, but at present, this is not possible. Exporting prescribed medicines involves a huge amount of paperwork and regulations, including being able to guarantee that they are stored correctly and at the right temperature for the entire journey. Like you, we hate the thought of wasting factor and are working to find a solution to this, but currently, our advice is to contact your centre about how to dispose of unneeded medication.
What should I do with unused or expired tablets?
Unused medication cannot be recycled.
Once any medication – open or otherwise – leaves the pharmacy, it cannot be recycled or used by another patient.
Return out-of-date or unused medicines to your local pharmacy or dispensary for safe disposal.
Never throw unused medicine down the sink, toilet, or in the bin.
Please remember that your medicines are prescribed only for you; it’s not safe to share them with anyone else.
Yes, you will have to pay. Implants are unavailable on the NHS, so it is prohibited to have NHS and private treatment concurrently for the same condition, regardless of what it is. It doesn’t only apply to dentistry. It’s unfortunate that implants are not included as the accepted standard of care in the NHS as they are so expensive and simply have insufficient resources in the NHS to justify high-cost treatment when simpler options for tooth replacement are available. Implants are available on the NHS for patients who have significant loss of teeth/function through cancer surgery and significant trauma.
If you are booked to have a procedure in the private sector, the consultant performing the procedure will need to find a haematology consultant who can oversee this in the private sector. Ideally, patients with a bleeding disorder should have surgical procedures completed within the NHS, to ensure they can be adequately supported by a haemophilia comprehensive care team.
In the UK, the private healthcare sector doesn’t use NHS haematology resources like factor concentrate, tranexamic acid, or DDAVP if needed for private surgeries. This is because NHS supplies are budgeted for NHS patients. It is the responsibility of the private haematology consultant to ensure that any required haematology treatments are sourced and appropriately costed. They must also ensure that someone is available at the time of the procedure to administer the treatment and monitor as required. These cannot be provided by the haemophilia centre.
Here’s why:
Separate Systems: The NHS and private healthcare are separate systems with different funding mechanisms. NHS factor concentrate and other haematology treatments are funded by the NHS, so they wouldn’t be readily available for private procedures.
Factor concentrate: This specialised treatment is often not routinely stocked by private hospitals.
Cost Implications: Private hospitals will likely source haematology treatments directly from a private supplier. This means you will be charged if you need them.
Costs:
NHS: The NHS covers the cost of factor concentrate and other haematology treatments for registered patients needing surgery.
Private: In a private surgery scenario, you’d likely be charged for the factor concentrate and other haematology treatments used during your procedure. For factor concentrate, the cost can vary depending on the type and amount needed.
Recommendation:
Discuss your situation with your haemophilia centre. They can advise on the best course of action regarding treatment for your bleeding disorder such as factor concentrate for your private surgery.
Contact your private health insurance provider to understand their coverage for factor concentrate and other treatments.
Remember, this is a general overview and specific policies may vary between hospitals. Discuss your situation with your consultant before scheduling surgery to understand the costs and options available for your surgery.
Ref: Barts Health NHS Trust. And BLOOD MATTERS, Oxford Haemophilia Services, Autumn 2022
