Pain and prejudice
How does a child come to terms with the fact that they must live with a painful and incurable life-long condition?
Sickle Cell advocate Laurel Brumant was first diagnosed with the de-habilitating condition as a three-year-old and has spent a lifetime fighting pain and prejudice.
“I call myself the miracle child,” laughs the 63-year-old campaigner from Ealing who spent decades in and out of hospital but refuses to be defined by her condition.
“I don’t want it dictating what I can and can’t do. The mental aspect of managing Sickle Cell is very important. It’s not easy but I always tell people not to define themselves by their condition.”
Sickle Cell predominantly affects the black community and is a genetic trait where red blood cells ability to transport oxygen around the body are severely impaired leading to bouts of severe pain.
Laurel added: “A lack of understanding about Sickle Cell means a lot of the community are unfairly labelled as aggressive and confrontational when they arrive in hospital.
"The reality is we are often in horrendous pain and have to wait longer than necessary for medication."
One of the most inspirational people Laurel met as a child patient was Elizabeth Anionwu, a pioneering nurse who helped open the UK’s first dedicated sickle cell centre at Central Middlesex Hospital in the 1970s.
Laurel added: “Hospital staff didn’t know a lot about Sickle Cell at the time and often though patients were exaggerating their condition.
“Elizabeth saw something was wrong and dedicated her life to doing something about it. Empathy and kindness go a long way and she was a god send for many of us.”
Laurel’s last major crisis was two-and-a-half years ago and was marked by waiting for several hours in an ambulance outside A&E before a nurse provided pain relief.
Laurel, whose condition has since been stabilised with daily medication, was among a group of patients who wrote to trust CEO Pippa Nightingale with a list how the hospital could better manage patients.
Laurel said: “Pippa did listen and it is a work on progress. It’s important to be constructive, not confrontational, but there is an expectation that things get done.
"The cornerstones include greater staff awareness of Sickle Cell, mandatory training for nurses and faster administration of pain relief."
In response, the hospitals’ A&E departments recently teaming up with the London Ambulance Service (LAS) to prioritise the need of Sickle Cell patients in crisis.
Lauren Fraser, an emergency consultant at Northwick Park Hospital, said: “At present, we see around 30 patients a month who present in crisis which is when the pain they live with becomes unbearable.
“The new initiative with LAS ensures patients coming into the department are quickly identified, we don’t waste any undue time repeating the same questions the ambulance crews have already asked, and ensure analgesics are given within 30 minutes.”
Laurel, a former school art technician, retired two years ago but is busier than ever and is involved in half a dozen sickle cell groups as well as maintaining a busy presence on social media and creating artwork shaped by her experience.
She highlights the importance of support groups not only personally but to collectively as a voice to raise awareness and campaign for change.
“I’d like my legacy to be that I helped make things easier for the next generation of Sickle Cell patients.”