People with genetic haemochromatosis want to play an active role in society. Many want to work, if they are able.

With over 380,000 people affected by the condition in the UK, most employers of scale will have employees with the condition. Genetic haemochromatosis is particularly prevalent in Northern Ireland, Scotland and the North of England, although people with the condition can be found throughout the country. Over 90% of people affected are unaware they have the condition. Left untreated, serious health issues can emerge over time. These include liver disease, cancer, diabetes, neurological issues and joint problems.

These guidelines are intended to help employers understand how they can help.

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The legal position

Genetic haemochromatosis qualifies as a disability under the Equality Act 2010.

Under the Act, genetic haemochromatosis represents a protected characteristic - a “physical or mental impairment” which has “a substantial and long-term adverse effect” on someone’s “ability to carry out normal day-to-day activities”.

Everyone is different. The degree to which someone is affected can vary between employees and over time. The condition is not curable and requires life-long treatment.

With regular treatment, the more serious consequences of iron overload (such as liver cancer, joint arthropathy, heart disease and diabetes) can be avoided.

Relevant case law includes :

Sloan vs South Eastern Health and Social Care Trust Case Ref : 605/13 (N Ireland)

An industrial (employment) tribunal from 2013 in which genetic haemochromatosis (c282y/c282y) was recognised by the the respondent and tribunal as a disability.

O’Sullivan vs London Borough of Islington Case Ref : 2207632/2016

A UK employment tribunal from 2016 in which a claimant with genetic haemochromatosis returned to work following medical treatment, but experienced discrimination associated with his disability : "Fortunately, medical treatment proved effective and he recovered sufficiently to feel able to return to the job market. It is, however, common ground that he was at all material times, and remains, disabled by these conditions."

McClements vs Health Innovation Network & Guy's & St Thomas' NHS Foundation Trust

A UK employment tribunal from 2019, in which a claimant with genetic haemochromatosis (c282y/c282y) was determined as disabled in a disability, gender and age discrimination case relating to two recruitment processes : "The Claimant suffers from a condition called genetic haemochromatosis which causes iron overloading and is known to cause cancer, heart problems, including cardiomyopathy, joint pain and other chronic symptoms. The variant of the haemochromatosis suffered by the Claimant is recognized as the most severe according to the British Heart Foundation. It is accepted by the Respondent that the Claimant was at all material times a disabled person within the meaning of Equality Act 2010."

Becoming a better employer

Good employers recognise the value of a diverse workforce. People with genetic haemochromatosis bring a range of valuable skills to work. Cherish them!

From time-to-time, people with genetic haemochromatosis may need additional support and understanding from their employer, depending upon their circumstances. This is particularly true immediately following diagnosis. People can be frightened or concerned; not just their health, but also their family’s.

Some practical ways employers can help

Under the Equality Act, employers are required to make reasonable adjustments for people living with a disability.

When an employee is initially diagnosed, they will very likely be experiencing iron overload. This is a potentially serious condition, where prolonged exposure to excess iron can cause serious illness and disease, including liver disease, heart problems, liver cancer and diabetes.

Here are a few practical steps that employers can take to support employees with genetic haemochromatosis

Ensure employees have paid time off to attend hospital appointments

The common treatment for genetic haemochromatosis is remarkably simple and clinically effective. It’s a form of regular blood donation, known as “venesection”. However, unlike blood donors, people with GH are required to attend hospital very frequently – as often as weekly or fortnightly – for the initial phase of treatment. An appointment can last from 30 minutes to all day; it may be subject to the vagaries of the NHS appointment system and be delayed on the day for no obvious reason. This phase of treatment can last months or years, during which time the employee may experience tiredness and physical soreness, following appointments.

You can be a good employer by :

• allowing your employee paid time-off to attend hospital appointments for clinics and venesections.
• encouraging your employee to attend their appointments, as advised by their doctor – healthy employees make for healthy businesses

Review employees’ working environment

Many people with GH suffer acute joint pain. This can be in the hands, wrists, knees, hips, ankles and elsewhere. Good employers will consider what changes can be made to the working environment to ensure the employee works safely and in comfort. Consider additional keyboard rests or physical equipment to reduce the strain on joints.

Be flexible, wherever possible

Genetic haemochromatosis can affect people differently over time. Someone who tolerates venesections well, may on occasion have a bad experience. Or they may find – to their surprise - that occasionally they have less energy than usual after treatment.

You can be a good employer by showing understanding if an employee becomes too unwell or too tired to attend work, following treatment. These episodes usually pass, and may not happen frequently. Good employers will work at the pace of their employee in these situations.