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2015 National Black Members' Conference
17 September 2014

Conference notes with concern the issues faced by our Black members living with long term conditions and hidden disabilities such as Systemic lupus erythematosus (SLE) more common in Black women, Sarcoidosis and Sickle cell. The fact that these conditions are not obvious can cause members to have their complaints for sick leave and requests for support to their employers treated with disdain and suspicion. This can result in victimisation and bullying at work, a refusal to grant time off required to manage the condition and a likelihood that the time off required will be usually recorded as sick leave rather than disability leave.

Scofield et al (2008) describe Systemic Lupus Erythematosus (SLE) as a ‘chronic autoimmune rheumatic disease which places a significant burden on the individuals affected and their family members’. Either as a consequence of the disease or of the treatments used for it, irreversible damage involving neuropsychiatric, renal, cardiovascular, and many other systems can occur. Additionally, patients often experience long-term morbidity that can adversely affect their quality of life and ability to work, resulting in substantial direct and indirect costs to the individual.

Common symptoms of SLE include:



c)Joint pain and stiffness, which is often accompanied by swelling and redness

d)Skin rash, including the characteristic “butterfly rash” on the face that extends over the bridge of the nose and cheeks

e)Sjorens syndrome

f)Raynauds phenomenon


h)Extreme fatigue

i)Weight loss

j)Loss of appetite, nausea, and weight loss

k)Chest pain

Symptoms which largely go unnoticed and are hidden.

Members with conditions such as these have reported that they have been accused of ‘being lazy’ and ‘sleeping on the job’ (a manifestation of chronic fatigue) and received comments from employers and work colleagues which reflect disbelief such as ‘I can’t see anything wrong with you’ when the sufferer may be in severe pain in every joint of their body. Often, accusations are made as to the necessity of their disability aids and requirement to take time off or vary their working hours. Members are often mismanaged through this process as managers demonstrate a lack of knowledge and skill in dealing with such a condition that is subject to ‘flare-ups’, (times when the condition is at its height and carries a majority of symptoms) this ultimately results in members being put on poor performance measures and disciplinary procedures. Many members complain about the isolation they experience at work as people discuss them and their conditions. The culmination of continuous treatment, enquiry and questioning results in stress, stress that only serves to exacerbate the existing conditions.

Conference, we know that it is against the law for employers to discriminate against you because of your disability. Further the Equality Act 2010 offers protection and extends to putting an obligation on employers to make reasonable adjustments in the workplace to avoid disabled workers being disadvantaged. However, many Black workers will be unaware of their rights and may not seek the proper advice because of the isolation that they feel.

Conference, people are losing their jobs, giving up when they cannot take it anymore or are managed out of the workplace as unable to perform their duties. There is no need for this to continue. Conference, we must do something to immediately address this situation which victimises and punishes our Black members for something over which they have no control.

Conference asks that the National Black Members’ Committee:

1)Work to raise awareness of these conditions which predominantly affect Black people;

2)Create documentation which can be placed on the UNISON website and in relevant UNISON journals as to the manifestation and symptoms of the condition;

3)Research members’ experience in gaining time off to assist them in the treatment of their conditions;

4)Work with the National Disabled Members Committee to seek to establish how UNISON can best support such members in the workplace and make them aware of their rights.