Sickle Cell Disease (SCD) is the name given to a group of
genetically inherited blood conditions affecting the blood haemoglobin. The
protein structure of haemoglobin (the oxygen carrier) of the red blood cells
is altered, causing a change in the shape of the cells. There are many
different types of the disease; Sickle Cell Anaemia (Hb SS) is the most
common, other forms of the disorder include Sickle Haemoglobin C disease (Hb
SC) and Sickle Beta Thalassaemia (Hb SßThal). Individuals with SCD
have inherited it from both parents. It is not contagious. Historically, it
probably developed as a protection against malaria. Those with Sickle Cell
Trait (Hb AS) have healthy red blood cells and do not have any symptoms. The
trait cannot develop into sickle cell disease.
There is currently no simple cure for SCD. The focus is on managing the
symptoms of the disease. Medical treatments which are available for suitable
candidates include pain relief, fluids and warmth as well as bone marrow
transplantation, blood transfusions, and hydroxyurea for the severely
affected. Other treatments include cognitive behaviour therapy. This
technique aims to enhance the ability of those with SCD to control and cope
with their condition and thus improve their quality of life.
Sickle Facts
There are currently over 10,000 people with SCD in
the UK.
Sickle cell tends to affect those of African and
African-Caribbean origin, but also occurs in those from the South
American and Mediterranean, Middle East and Asian countries.
The most common medical problem is caused by the
sickle shaped red blood cells becoming clumped together and blocking the
blood flow through the small vessels, causing painful 'crisis'.
Individuals with SCD may have to be admitted to
hospital when they have a crisis.
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.
As individuals with SCD are require regular fluid
intake, they may have to urinate more often.
Most people with SCD can manage most of their pain
themselves using a variety of techniques including taking pain killers,
rest and relaxation.
Sickle Cell Disease and
Work
Sickle Cell Disease does not affect a person's
intelligence (except in extremely rare cases).
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 for
routine check-up.
Individuals may not be forthcoming about their
illness. Possible reasons for this include fear of being stigmatised,
and having their capabilities underestimated.
With improved healthcare, the life expectancy of
individuals with SCD has improved.
An open working environment will reduce this fear
and allow for allow for empathetic planning and communication about
managing the individual's work during periods of illness.
Individuals with SCD can and do join pension
schemes.
Why should an employer
want to find out more about sickle cell disease?
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
has sickle cell disease.
understand how an employee is coping with SCD in the
working environment
make informed decisions about tasks which your
employee can and cannot do and, where necessary, provide an environment
that will minimise periods of illness.
introduce a more flexible working pattern to suit
you and your employees and review this when necessary.
are 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
person's 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.
Where can I find out more?
To find out more about Sickle Cell Disease and other common
haemoglobinopathies or to find out where your local centre is located, you
can contact the Brent Sickle
Cell and Thalassaemia 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/phone:
Disability Rights Commission
Freepost
MID02164
Stratford Upon Avon
CV37 9BR.
