Sickle Cell Disease and Employment

Sickle Cell Disease (SCD) is the name given to a group of genetically inherited blood conditions affecting the red blood cell haemoglobin. Haemoglobin is the oxygen carrying part of the red blood cell, see Haemoglobin.

There are many types of sickle cell disease: Sickle Cell Anaemia (Hb SS) is the most common and often the most severe, Sickle Haemoglobin C disease (Hb SC) and Sickle Beta Thalassaemia (Hb SβThal), see Sickle Cell Disease. Individuals with SCD have inherited an unusual haemoglobin gene from their parents. It is not contagious. Those with Sickle Cell Trait (Hb AS) are healthy carriers of the sickle cell gene and do not have the disease or any symptoms. Because these conditions are genetic the trait cannot develop into sickle cell disease nor can the disease change into the trait.

Sickle Facts

  • There are currently over 12,000 people with SCD in the UK.
  • Sickle cell tends to affect those of African and African-Caribbean origin, but also occurs in those from South America, Mediterranean, Middle East and Asia.
  • The most common medical problem is caused by the sickle shaped red blood cells becoming clumped together and blocking the blood flow in the small blood vessels, causing a pain commonly called a ‘sickle cell crisis’.
  • Individuals with SCD often management their pain at home but where their condition is worsened they may have to be admitted to hospital for special treatment.
  • The severity of the pain experienced during a painful crisis, and the duration and number of crises during any one year vary considerably from person to person, so it is important that individuals with SCD are treated as individuals.
  • Individuals with SCD need extra fluids, about 3 litres a day, but their kidneys is not able to concentrate urine very well therefore they ted to urinate a lot more.
  • Most people with SCD can manage most of their pain themselves using a variety of techniques including taking pain killers, rest, warm bath, massage and relaxation.

Sickle Cell Disease and Work

  • By the time an individual starts work they will already be aware of the things that tend to trigger their illness. Common triggers of crisis include cold, infection, overt physical activity, dehydration and overt stress.
  • Sickle Cell Disease does not affect a person’s intelligence (except in extremely rare cases, for example, if the person has had a stroke).
  • In between crises, an individual with SCD should be in good health.
  • Time off work may be required for individuals with SCD if they are unwell or in order for them to attend hospital or their community doctor (GP) for routine check-up.
  • Individuals may not disclose to others that they have this condition. Possible reasons for this include fear of being stigmatized, and having their capabilities underestimated.
  • An open working environment will reduce this fear and allow for empathetic planning of the working environment, work activities and communication about managing the individual’s work during periods of illness.
  • With improved healthcare, the life expectancy of individuals with SCD has improved.
  • Individuals with SCD can and do join pension schemes.

Employer responsibilities

As an employer, knowledge about this disease may be important for you for a number of reasons as you:

  • May not be aware that one or more of your employees may have sickle cell disease.
  • Need to understand how an employee is coping with SCD in the working environment.
  • Need to make informed decisions about tasks which your employee can and cannot do and, where necessary, provide an environment that will minimize periods of illness, for example, draught free working environment, not too much stairs to climb, offer support to reduce overt stress.
  • May benefit from introducing a more flexible working pattern to suit you and your employees and review this when necessary.
  • The majority of people with sickle cell disease are well 90% of the time and often take less time off work than the general working population.
  • Need to be aware that as a result of The Disability Discrimination Act (1995), codes of practice have been published with the aim of eliminating discrimination in the field of employment against a person with a disability.
  • Organisations with 15 or more employees have new duties under this act with which they must comply or face an industrial tribunal.

Further information

To find out more about Sickle Cell Disease and other common haemoglobinopathies or to find out where your local centre is located contact the Brent Sickle Cell & Thalassaemia Centre 020 8453 2050, contacting one of the specialist National Sickle Cell / Thalassaemia Centres.

Information and leaflets regarding benefit entitlement and their rates can be obtained, free of charge from your local job centre plus office, social security office or job centre. To find out more about disability and employment you can contact your local job centre and ask to speak to the Disability Employment Adviser.

Or write to/telephone:

Disability Rights Commission

Freepost
MID02164
Stratford-Upon-Avon
CV37 9BR

Telephone: 08457 622 633
Textphone: 08457 622 644
Fax: 08457 778 878

You can get more information from the Department for Work and Pension, job centre plus and the Pension Service’s websites. Their addresses are: www.dwp.gov.uk, www.jobcentreplus.gov.uk and www.thepensionservice.gov.uk.

The Benefit Enquiry Line is a free confidential telephone service set up for people with disabilities, their Carers and representatives. Phone: 0800 88 22 00, Text phone: 0800 24 33 55