Preserving the History of Sickle Cell in Britain

August 14, 2018

 

 

12th April 2018

 

This evening I was interviewed by a historian for 2hrs. We met at the meeting room of the history department at UCL off Warren Street.

She is currently doing her doctorate at UCL. Her work is funded by the Wellcome Trust and UCL specifically around research using oral history methods in ‘Preserving the History of Sickle Cell in Britain dating to the 1950s’. 

 

People such as myself will tell their stories. Mine dating from the 80s. I enjoyed talking to her. 

 

I asked her “why sickle”?

 

She told me wished she had a more exciting and convincing response about why she chose to look at sickle cell. She didn’t.

 

She subsequently explained that there was no specific intention until she was looking through historical archives on black culture specifically linked to health. In doing this, she found sickle cell was featured in many chapters of these documented archives. 

 

She became intrigued by this discovery and so the research project was born and came alive. 

 

I told her no one else had done this and she could literally be “making history”.

 

That’s what historians do, right?

 

She did say she had struggled to get stories of people born in the 50s and 60s.

 

I wondered if there was a link with the lack of disease modifying treatments at the time which often led to a poor quality of life and subsequently early mortality or just the pure fact that prognosis was often non-existent before the 50s. 

 

But then many people in their 50s and 60s could be going through a tough time with their health. Not all, but most. 

 

I told her about the only known sickle woman aged 93 who lives in Nigeria and how she could have been the perfect subject for the preservation of sickle history. 

 

I hear a number of Brits and Americans have been to Lagos to speak to this amazing woman to find out how she has made history trudging through life and surviving a complex condition that once had a high prevalence in child mortality specifically in her time. It’s absolutely incredible and I hope one day I can meet her. 

 

She asked me how I am able to align my experience of working in change management and transformation in the national health service and my experience in policy redesign and service improvement in hematology services as a patient. 

 

I told her both go hand in hand. It’s like building two careers in different settings. 

 

I explained I am in a better position to understand how care/ services are organised in the NHS having worked as a commissioner and provider but also as a patient, why I may be accessing the type of care I do and where. 

It’s a fine balance but essentially that fearless ability to challenge services as a patient and as a manager is the best opportunity my career has created for me. 

 

She was fascinated by this. 

 

She asked me what was the one thing that kept me going. I told her the ability to just be cathartic with words on paper - to use literal expression to try to make sense of a world, very often in the past, one of pain and suffering, sometimes unworthy of. 

 

I told her I have been writing since I was little girl. I showed her all my random expressions of words documented on my phone notes. 

We talked about everything. It was coming up to 7.

 

She told me I was a great interviewee. I told her I talk too much. She said you made my job perfectly easy. I told her I threw ethics out of the door. We both chuckled. 

 

But ultimately I think it’s fascinating that this researcher is leading this work and I am excited to be part of the project. 

 

#suckerforintellects

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