Psychological Impacts

As nurses we are best placed to consider the psychological aspects and wellbeing of patients diagnosed with GH. Being informed that they have a genetic disorder which they inherited from their parents (and the parents may be unaware that they are carriers or have the condition themselves), which potentially requires life-long treatment, can cause a high level of anxiety.

It is often patients recently diagnosed with GH who are required to inform their siblings and parents of the possibility that they too might have inherited the condition. A letter should be offered from the hospital to assist with the explanation. If the patient has children, consideration should be given to offering the partner a HFE test to see if they are a carrier of the GH (if the children are under 18) or waiting until the children reach the age of consent so they can be tested. Remember, if a patient is diagnosed with GH, all their children will be carriers. However, the children will only develop GH if their other parent is a carrier or has the condition too. If genetic counselling is available, it may be helpful to refer for further advice and support.

Haemochromatosis UK publish free guides to help families talk about a new diagnosis of genetic haemochromatosis.

Another factor to consider is that treatment requires initially, weekly venesections. If ferritin levels are high, it can take many months to reduce the levels to below 50mcgs/l. Patients may require time off work to attend clinic appointments and the appointments offered may not be on days that suit the work/home environment. Other factors include the cost of hospital parking, or even finding a hospital car parking space, or childminding issues all of which can be a cause anxiety or affect the metal wellbeing of someone with GH. Certainly, during the Covid 19 outbreak, many treatment units stopped admitting patients for venesection which caused increased anxiety to patients requiring regular venesections.

Patients diagnosed later in the disease process can suffer organ damage such as liver cirrhosis and require long term surveillance in the form of 6 monthly liver ultrasound and tumour markers. If diagnosed with oesophageal/gastric varices these may also require regular endoscopic surveillance and long-term drug treatment.

Many patients endure a wide range of symptoms such as arthritis, loss of libido, stomach symptoms and may have anxieties about what foods are safe to eat in the context of a ‘normal balanced diet’. Written guidance is available both in print and online from Haemochromatosis UK:  together with telephone and email helpline advice and contacts for a range of local support groups.

Learning points

  • As nurses we are best placed to consider the psychological aspects and wellbeing of people diagnosed with GH which requires lifelong treatment and offer appropriate support.
  • If someone is diagnosed with GH all their biological children will be carriers. Children will only potentially develop GH if their other parent is a carrier or has GH.
  • Prompt diagnosis will lessen the risk of developing long term complications of GH such as cirrhosis, diabetes and cardiomyopathy.

Next steps

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