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Having iron deficiency during your periods isn’t normal, there are gynaecologists that don’t consider it a red flag even though it is! Your body requires iron it’s essential, you don’t just lose iron content but also the required nutrients from your body, this is the fragile reality of a women’s health. Being told that it’s normal by a GP or a gynaecologist is wrong on so many levels!

 

There’s no specific bleeding patterns in women when it comes to their menstrual cycles, there’s a lot of research that yet to be done into a woman’s reproductive health in the first place. A report from the Haemophilia Society titled ‘Underserved, Overlooked: How our health systems are failing women and girls with a bleeding disorder’ aims to change just that! We need to advocate on raising awareness on haemophilia in general and that there are options and that this could result in HMB (heavy menstrual bleeding.)

Kate Burt, Chief Executive of The Haemophilia Society, stated: 

“NHS bleeding disorder services were built for men, and our report suggests they’re not working for women. A lack of research combined with an outdated clinical and financial mindset is holding back women and girls’ treatment and care.”

Dr Nicola Curry, Co-Chair of the UK Haemophilia Centre Doctors Organisation (UKHCDO) Girls and Women with Bleeding Disorders Working Party, welcomed the report. She said: 

“This is such an important piece of work that highlights the contemporary needs of girls and women with bleeding conditions. The report helps to shine a spotlight on the diverse needs of our patient group and offers important details about how we, as clinicians, can understand better how to personalise patient care, and adapt our services to reflect these needs in our local hospitals. Managing challenging symptoms, such as heavy menstrual bleeding or frequent bruising can be very difficult and there’s more to be done in supporting girls and women with a bleeding disorder to achieve a better quality of life.”

The UKHCDO (the UK haemophilia doctors’ organisation) working group on women and girls recommends that additional information should be collected including data on demographics, referral and diagnosis, menstrual health, obstetric health, gynaecological health, iron status and treatment.5 A common impact of living with a bleeding disorder is iron deficiency anaemia (IDA) which was reported at a 25% higher rate in women compared to men in the PIVOT-vWD UK Study. Women with heavy menstrual bleeding saw even higher rates of iron deficiency anaemia. Currently, iron deficiency is not being sufficiently well monitored for many women and girls with a bleeding disorder so that they can be effectively treated earlier to prevent the development of anaemia.

HEALTH-RELATED QUALITY OF LIFE

The health-related quality of life involves:

• A patient’s specific health care needs
• Assessing the effectiveness of meeting these needs
• Optimising treatment strategies
• Delivering optimal therapies to the patient.

 

Far too often women are being let down at primary care level because the complexities of testing for genetic bleeding disorders are not recognised. Testing, if it happens, is ineffective, sometimes resulting in women being told they don’t have a condition, when the opposite is true. Due to the complexity of presentation and diagnoses in women and girls with bleeding disorders, clinical judgement of specialist clinicians should be relied upon in establishing the most appropriate care and treatment plan.

 

Recommendation 1

People with bleeding disorders should have equitable access to good quality bleeding disorder care irrespective of sex and gender and regardless of where they live in the UK.

 

Recommendation 2

Funding should be provided to centres and the National Haemophilia Database to collect more patient relevant outcome data to better measure quality of life in women and girls with bleeding disorders and support more research on the lived experience of women and girls with a bleeding disorder.

 

Recommendation 3

Women and girls with bleeding disorders should be offered frequent monitoring for anaemia and ferritin levels with treatment and referral as required.

 

Recommendation 4

Girls with a familial history of bleeding disorders or an increased bleeding tendency should have access to testing for factor levels, platelet aggregation and clotting screens from birth with tests repeated throughout childhood.

 

Recommendation 5

Where relevant for diagnosis or treatment genetic testing should be offered to girls with bleeding disorders and girls with a familial history of bleeding disorders as part of routine practice.

 

Recommendation 6

Improved referrals from primary care would be supported by development of a specific bleeding assessment tool for women and girls. Bleeding disorder clinicians and patient groups should work to develop guidelines for primary care in relation to use of BATs and appropriate referrals to specialist services.

 

Recommendation 7

Hospital trusts should fund more gynaecologists and facilitate improved links between haemophilia centres and gynaecology services. All regional bleeding disorder networks should include gynaecologists in the multidisciplinary team and haemophilia centres should run joint bleeding disorders/gynaecology clinics for patients that need them.

 

Recommendation 8

Haemophilia centres, workingwith patient groups should ensure girls with bleeding disorders have better access to information on what is normal menstrual bleeding and what their treatment options are. Haemophilia centres should ensure menstrual bleeding management plans are in place before a girl with a bleeding disorder has her first period.

 

It’s also estimated that there’s a larger population of women and adolescent girls out there who probably don’t know why they bleed and the fact that it’s not PCOS but a clotting issue or perhaps something else!

Recommendation 9

Women and girls with bleeding disorders should receive better information on access to and use of tranexamic acid, and this should be included by centres in care plans as standard. When clinically indicated, women and girls should have equitable access to factor products and non-factor therapies, including as prophylaxis.

 

Recommendation 10

Funding should be sought for studies on the benefits of prophylaxis with factor products and other agents such as desmopressin in women and girls, particularly in management of heavy menstrual bleeding.

 

Recommendation 11

Haemophilia centres should provide women with bleeding disorders with pre-conception genetic counselling and consultation to create a comprehensive management plan for pregnancy with all treatment and care options during pregnancy, childbirth and post-partum.

Challenges in the perimenopause can include un-anticipated periods, stomach cramps and continued bruising. These need treatment and care and may not be resolved until the post-menopause period. Additional factors that stigma and worry may lead to women not sharing their issues and concerns with professionals, partners and family.

Recommendation 12

Haemophilia centres should improve the pathway for care for women with bleeding disorders during menopause through specialised clinics and improved internal referrals.

 

Recommendation 13

Annual appointments may not be sufficient to ensure continuity of care for women and girls with bleeding disorders and complex needs or bleeding that is not well managed. Trusts should provide sufficient resources to haemophilia centres to allow for more frequent appointments as required to effectively manage their patients.

 

Recommendation 14

Patient groups should develop further resources to assist women and girls with bleeding disorders or suspected bleeding disorders in understanding their rights in access to pathways for treatment and care.

 

Women and young girls should be aware that this is a normal physiological processes for certain disorders and that you can still achieve the impossible even if it means that a selected few people believe in you and in the fact that you can be accomplished in your career and dreams, you are not alone, I repeat, you are not alone! Haemophilia comes in different forms be it mild, or moderate, it can go up to severe!

Recommendation 15

Trusts should provide funding for centres to offer a psycho-social support to all women and girls with bleeding disorders.

 

Recommendation 16

Many women and girls with bleeding disorders require physiotherapy to maintain joint health and take part in sport and other activities. This should be available as standard at all haemophilia centres.

 

A specialist care is precision medicine at its finest and the best possible care that we can give to our patients! We need to work together to provide individualistic care as much as possible to our patients!

Recommendation 17

There should be an evolution towards the renaming of haemophilia centres to bleeding disorder centres to reflect the wide range of bleeding disorders managed and treated there. Specialist haemophilia doctors and nurses should usually be called bleeding disorder doctors and nurses.

 

Recommendation 18

All hospitals should be able to treat women and girls with bleeding disorders in acute situations, with appropriate support from haemophilia centres.

 

Recommendation 19

Treatment and care records for people with bleeding disorders should be available to patients and to treating clinicians in all settings.

 

Are we as physicians not breaking our Hippocratic oath by refusing to take care, by just merely stating an ‘oath’ on repeat, without fulfilling our obligations for the greater service of mankind and the progression of medical knowledge for the greater good of mankind?!

 

 

 

Source: ‘Underserved, Overlooked: How our health systems are failing women and girls with a bleeding disorder’

Haemophilia Foundation Australia