Comfort Okolo trained as a nurse in Ibadan, Nigeria and came to Newham in 1973 to Plaistow Maternity Hospital for her midwifery training working at both Plaistow and Forest Gate hospitals. Comfort went on to train as a counsellor and in June 1987 started her work for the first NHS Sickle Cell and Thalassaemia Centre in Newham, where she worked for 22 years specialising in Antenatal care. The centre that was first set up in Shrewsbury Road, can now be found in High Street South in East Ham.
Sickle cell and thalassaemia are inherited blood disorders that affect haemoglobin, a part of the blood that carries oxygen around the body. If you’re a carrier of the sickle cell or thalassaemia gene, you can pass these health conditions on to your child so it’s important for those at risk to be screened. Parents often will not have sickle cell disease themselves and they are only carriers of the sickle cell trait. Sickle cell disease is a serious and lifelong health condition, but treatment can help manage the symptoms.
In this NHS film you can learn more as Comfort speaks about Sickle cell anaemia and the causes. Junior describes what it is like living with the condition, its symptoms and painful episodes called sickle cell crises.
As well as being a specialist antenatal nurse counsellor Comfort also worked in outreach with the Sickle Cell Society and support groups. “The support groups are very very important, because here you have people who have, or are living with the disorder…and they’re actually able to share experiences and how they help themselves.”
Together they raised awareness and helped people to be screened which would sometimes take place at barber shops:
“A barbershop is where you can just meet people who’d come in randomly, just to come in and you [could] give them that information. And a lot of them will take it up, ask for the test, ask for family studies. So again reaching out, not just for the support group but just out there for people who may not have had a blood test.”
Being screened is important and couples who are carriers of the sickle cell trait and at risk of having a child with a disorder are given options to have further tests. Comfort feels strongly about being given these options:
“prenatal diagnosis is actually available and some will do it and others won’t, but the important thing is that they’re actually given that choice…The reason why you want to have a test is maybe to prepare yourself, it might be because you want a termination if it’s an affected foetus, but at the same time it might just be because you just want to prepare yourself before the baby’s born, and I think the decision is the couple’s, or the lady, it’s her decision.”
But some people are luckier than others. Comfort tells us about one such person:
“A young lady who was at risk was very very lucky, she had 3 children and none of them were affected…she’d had 3 boys and I just said to her, ‘you’re looking for a girl aren’t you? and you know you’ve been lucky, luckier than most. You’ve actually had 3 children who were not affected. You could actually have this number 4, it might not be the girl you’re searching for, and have a sickle cell disorder’ But life is such that some people are luckier than most. She ended up with another child without a disorder and I think it was another boy.”
Comfort offered strong support to her clients and would often go along with them to screenings if they had nobody else to support them. If the results showed the baby was affected, Comfort would always knock on their door and deliver this news in person. Comfort really cared for her clients and developed strong relationships and even made some life-long friends. She is still stopped in the street by children she once supported who are now grown up.
“I had 22 years in Newham, started at Shrewsbury Road and ended up at High Street South, and [I’ve] not regretted any minute of it. There are some sad times when we lose people with the disorder, but there were more happy times.”
Since retiring 12 years ago Comfort has continued to give talks and support to groups both locally and in Nigeria. She had just returned from giving training in Nigeria before the lockdown. Comfort tells us how life during Covid19 is particularly hard for those with Sickle Cell and Thalassaemia and how to take care.
Find out more about the Sickle and Thalassaemia Centre in Newham here. For more information you can also visit the NHS site for information on Sickle Cell and Thalassaemia and for support please also visit the The Sickle Cell Society.
Find out more on screening and diagnosis on the NHS site here.
For more information about Sickle Cell you can also view the Sickle Cell and Thalassaemia Centre’s information leaflet here.
Listen to more from Comfort Okolo and her specialist knowledge working with Sickle Cell and Thalassaemia:
What is Thalassaemia?
What is Sickle Cell?
What is the Sickle cell crisis - aplastic anaemia?
A special thank you goes to Comfort Okolo, Iyamide Thomas from The Sickle Cell Society and the East London NHS Foundation Trust – Sickle Cell & Thalassaemia Centre.
We talk to Comfort Okolo who worked at The Sickle Cell and Thalassaemia Centre in Newham from when it was first formed in 1987. Comfort worked at the centre supporting the community for over 20 years until 2009. Comfort talks to us about the disorder and about her experience working in Newham.