Nursing

An introduction to Genetic Haemochromatosis for nurses & healthcare practitioners

As a nurse in secondary care you will be seeing not only patients that have been diagnosed with genetic haemochromatosis (GH), but also patients that may be experiencing symptoms of GH that are being investigated but have not been diagnosed.

Nurses are in a great position to be able to not only identify these symptoms but be the health care professional that patients choose to talk to and disclose all the symptoms they have.

A nurse on a ward looking after a patient who has been admitted with abnormal liver function may then be identify other symptoms that patient has that could all be being caused by genetic haemochromatosis.

A nurse working in a outpatient department may routinely be checking a patient’s blood pressure and heart rate in a cardiology clinic for symptoms relating to cardiomyopathy and chronic fatigue, when the patient starts talking about their joint pains, swollen hands and pigmented skin. What seems like a completed unrelated symptom could all actually be pointing to a diagnosis of GH.

This is why it is important for nursing staff to be aware of the symptoms of GH.

As well as being able to offer advice and support to patients who have already been diagnosed but have questions and concerns about their health. Our nurses' guide has everything a nurse needs to know to be able to support their patients diagnosed/undiagnosed.

Guide for Nurses & Healthcare Practitioners

Venesection Best Practice

GH has no cure, but with early intervention and regular, appropriate treatment it can be managed as a life-long condition. The primary therapy - venesection - is known to be clinically effective when performed correctly.

Our award-winning Venesection Best Practice Guidance is endorsed by the Royal College of Nursing and used as the basis of our nurse and HCP training programme. The guidance is available for free download, on Amazon (as an eBook) and free from our charity directly.

Phobias - Blood, Injection, Injury

People with genetic haemochromatosis can experience blood, injection or injury phobia during their venesection treatment. Venescetion is the primary therapy for genetic haemochromatosis treatment; this treatment can be a trigger for BII phobia.

In this video, Dr Haris Yennadiou, Highly Specialist Clinical Psychologist at Guy's & St Thomas' NHS Foundation Trust, explains what BII phobia is, the range of therapies available and how to support patients through treatment. This video forms part of Haemochromatosis UK's clinician education programme. We gratefully acknowledge the generous support of our education programme by Shears Foundation and Ground Construction Limited.

Click here for a transcript of this video

We have collated the following resources, for use with patients who may be experiencing blood-injection-injury phobia

Overcoming blood and needle phobias and medical anxiety (Haemochromatosis UK)
Breathing exercises for patients pre-venesection (Haemochromatosis UK)
Overcoming your fear of needles (King's College Hospital NHS Foundation Trust)
Overcoming your needle phobia (Guy's & St Thomas's NHS Foundation Trust)

Latest

Liver cancer ten times more likely in men with GH

Men who have the Western world’s most common genetic disorder, haemochromatosis, are ten times more likely to develop liver cancer, according to a major new study.
The Big Give 2020

The Christmas Challenge. One donation, twice the impact. The Big Give runs the UK’s biggest match funding campaign, The Christmas Challenge. For seven days, it offers supporters of Haemochromatosis UK the opportunity to have their donation doubled.
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We work closely with NHS blood donation services across the UK, to improve the opportunities for people with genetic haemochromatosis (GH) to become blood donors. Learn about some forthcoming changes to these schemes in England and Scotland.
That'll be The Day Christmas Show

That’ll Be The Day’s Rock & Roll Christmas show has been running for over thirty years. Thanks to the Independent Age Foundation, we are very excited to offer you the chance to see the brand new Christmas show in the comfort of your own home!