Healthcare and Race: An exclusive interview with John James OBE, from Sickle Cell Society

Our written interview series allows our audience to learn more about the charities and organisations that we donate to. O. D. Adedji is one of our Racial Justice artists. Her art explores heritage, legacy and contribution, revealing the beauty and dynamism of Nigerian culture to new audiences. Adedeji has chosen to direct her work’s donations towards Sickle Cell Society, UK. 

We were lucky enough to interview John James OBE: Chief Executive at Sickle Cell Society, UK. They tell Artvocate all about the organisation, along with their future plans and current thoughts on our artists and their work!

O. D. Adedji, Vee (left) and A Sign of Hope (right), pictures at Artvocate's Not on Paper exhibition (London, 2022)

Sickle Cell Society works to support and represent those affected by Sickle Cell Disorder to improve their overall quality of life. Can you tell us more about the main focuses and what you do?

We assist people living with Sickle Cell Disorder (SCD) and their families to enable effective self-management of their condition and enable them to realise their full potential. The main ways we do this is as follows;

• Raising awareness by way of health information/education through a variety of formats, blogs, podcasts, e-materials. Resources on our website, webinars, conferences, workshops and events
• Delivery of direct services such as our Helpline and Information service (telephone, face to face and email) activities for young people living with SCD and their families such as our 3-4 day summer Family Retreat and our children and young people peer mentoring programme. We also encourage black and mixed race people to donate blood through our Give Blood Spread Love programme. We urgently need more black/mixed race donors not least because regular transfusions is one of the available treatments for people living with SCD.
• Supporting Industry, Life sciences sector eg Genomics England, Universities with SCD research to improve health and health outcomes.
• Lobby and campaign for policy changes to reduce health inequalities for the SCD community including through the All Party Parliamentary Group for sickle cell and thalassaemia.

What is your role within the organisation?

I am the Chief Executive of the charity. I provide the leadership for the organisation to achieve its strategic goals ably supported by a great small staff team and volunteers, with strategic support from our diverse and strong board of trustees.  At all levels in the organisation we have people who live with SCD or cares for someone who has the condition.

In our Racial Justice narrative, we bring focus to the inequities that exist within the healthcare system for the black community. Is this issue relevant within your line of work, and have you sees any progress?

The issue of racial justice and health inequalities for people living with SCD is particularly relevant to our work as a charity to bring about sustainable change and improvement to the health and health outcomes of people living with SCD.

SCD is a haematological red cell blood disorder. In summary red cells become sickle shaped when de-oxygenated. The cells are also less supple than normal round blood cells. As a result of the sickling the red blood cells become trapped in blood vessels causing severe pain (sickle cell crises) and also long term damage to the organs. One patient described a crises to me as someone ‘hammering a nail into her joints’.

Let’s not forget the impact on mental health and well-being. SCD affects all aspects of one’s life.

Whilst SCD is truly a global condition, it predominantly affects people whose heritage is from Africa, the Caribbean and Asia. SCD is the most common and fastest growing genetic blood condition in England with approximately 17-18,000 living with sickle anaemia, in contrast to the many more people who are healthy carriers (trait) of the condition.

SCD is an underserved and overlooked condition by policy makers. It has been this way for decades. People living with SCD experience significant NHS care failings which has resulted in unnecessary deaths of patients as well as negative attitudes linked to race. All of the evidence associated with the NHS care failings of people living with SCD are outlined in the All Party Parliamentary report; No One’s Listening (available at no cost on the Society’s website).

 

What has your organisation been working on recently, and do you have any future events that you’re excited about?

There is quite a lot going on. Apart from following up on securing change through the recommendations from the No One’s Listening report, we are currently working with NHS England and SCD patients and their families to improve access to automated red cell exchange across the country. Unfortunately, it is a bit of a post code lottery.

We are also rolling out our evidence based children and young people’s peer mentoring programme in London and also other parts of the country.

We will be holding a conference with our public health partners and partner charities on 18 April about ante natal screening not only to highlight collaborative work we have undertaken but also to improve the screening pathway.

 

One of our artists, O. D. Adedeji, is directing their artwork’s charitable donation to your organisation, Sickle Cell Society. Their work Yinka explores mental health within the black community. What are your thoughts on this piece, and do you feel it can help spread awareness for racial equity within healthcare and beyond? 

I like O.D Adedeji’s work entitled Yinka.  My thoughts on this piece are: first, it resonates with mental health and well-being for people living with SCD because this (the psycho-social impacts of SCD) is a significant factor for children and adults living with this condition.

Secondly, SCD is an invisible condition - the image portrays some of that invisibility but at the same time it also portrays how sometimes people (in this case, health care professionals) only see one’s blackness/colour, which can bring about racist and negative attitudes.

Thirdly, Yinka shows pain/anguish in the eyes of one of the individuals which clearly resonates with SCD and painful crises. However, in the eyes of the other person there are signs of hope. It motivates me and our work as a charity, to make that hope a reality. I certainly think it can help spread awareness for racial equity in healthcare and beyond. It will have meaning to many people who live with SCD and their families

O. D. Adedji, Yinka (2018), oil on wooden panel, 80 x 80 cm.