Sickle Cell Society: GSK IMPACT Awards


You wouldn’t wish the pain that we go
through on your worst enemy. It’s just the worst pain that you can ever imagine.
You cannot move, you’re struggling for breath, you’re struggling to talk. Sickle Cell Disorder is an inherited blood condition which affects approximately
15,000 people in the UK. If your heritage is black African, African Caribbean,
Middle East, Mediterranean then sickle cell predominantly affects you.
It’s a disorder of the hemoglobin and hemoglobin carriers oxygen all round
your body. The usual or the normal red blood cell is round, it’s soft, it’s
spongy. When oxygen gets taken out of it it changes shape. You have a sickle shape
like a crescent moon and when they sickle they become rigid. The veins get
blocked with sickled red blood cells. They get severe pain in that area. They are
likely to have some emotional distress as a result of maybe the pain or the
symptoms. People might have some difficulty in coping with it. This
illness kills people. It causes damage to organs,
it can cause strokes, the world needs a far greater awareness than is currently
available. The Sickle Cell Society is a community-based organization that
predominantly works with people who live with sickle cell and their families. We
want to ensure the best available access and treatment for their condition. The
work with NICE was intended to have clearer standards about how people are
treated when they arrive in the accident and emergency. In 2016 we worked to introduce
automated red blood cell exchange. It can take many hours for a doctor to
sit there with the manual exchange transfusion. With the automated exchange
transfusion the machine does it routinely; the complications that arise
is reduced. NICE believe that over 13 million pounds
worth of savings are generated by this new system. During my pregnancy I
remember one of the consultants telling me are you sure mum do you want to go ahead with
this and I said oh sure I’m not gonna terminate my unborn child and the
consultants say you need to think twice because it’s going to have a massive
impact in your life. We’ve always recognized there’s been a problem about
prenatal diagnosis and the experience of women. The fact that they presented early
didn’t mean that they were offered prenatal diagnosis early. The NHS wasn’t
performing to the standards that we set so we commissioned the Society to help
us understand the reasons for that. We’ve rewritten our guidelines on counselling
and prenatal diagnosis and we produced a variety of educational resources. Breaking Down Barriers is another initiative that’s being developed to
reach out to those communities living with sickle cell who are not as well
served, particularly the French-speaking
communities, Portuguese and Brazilian communities. The Sickle Cell Society
operates a helpline that gives people whatever support that they need and it’s
predominately for people who live with sickle cell but also families individuals and
organisations. The Society has set up a mentoring scheme in the London Borough
of Hackney for young people with sickle cell. They are identified peer mentors
who can really help them develop their skills understand their illness,
particularly around things like education and accessing college and that
has worked fantastically well. They’ve given me so many opportunities if ever I
do need anything as well I know that they’re always there. Even when you have
sickle cell you can still achieve can still succeed.

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