‘Where is the justice for those families who need peace and healing?’ (Pictures: Chanel Taylor)
The Covid backlog is increasing NHS waiting times for sickle cell patients to receive lifesaving blood transfusions, and contributing to the crisis of blood shortages.
Chanel Taylor, a 37-year-old mother from south west London, says the blood shortages and delays in her blood transfusions has significantly affected her emotionally and physically.
‘I’ve had three surgeries and lost my vision due to sickle cell,’ Chanel tells Metro.co.uk.
‘To live a better quality of life, I receive seven units of ethnically matched blood every five weeks. If I didn’t receive these donations I wouldn’t not be alive today. So, every day is physical and mental challenge – not knowing what pain or psychological state I’m going to be in.’
During the pandemic, Chanel was delayed for a critical blood transfusion for 25 days. That is more than a month of pain, discomfort and uncertainty.
‘I was supposed to have my exchange on the August 2, however I got a message to say that my treatment had been cancelled due to staff shortages,’ says Chanel.
‘Automictically, my anxiety levels hit the roof. As a blood recipient, I know the last two weeks when I’m due my exchange I’m already quite fatigued so I don’t take on as much work so my body is able to handle the energy levels.
‘It was really difficult to navigate and figure out how I am going to survive.
‘Luckily, I have now had my transfusions 25 days later and the backlog of my body catching up; it’s still catching up and I hate that feeling.’
Chanel is not alone in her experiences.
The sickle cell community in the UK is facing a crisis. There has been a significant reduction in blood stocks, and this decrease in available blood supply coupled with the historical lack of blood donors from the African and Caribbean communities is dramatically impacting the lives of those with sickle cell.
What is sickle cell disease (SCD)?
SCD is a genetic condition that affects haemoglobin, a protein carried by the red blood cells that delivers oxygen throughout the body SCD is a rare genetic condition which affects approximately 15,000 people in the UK and 52,000 people across Europe.
Sickle cell is a disorder which causes the red blood cells to change shape – into a ‘sickle’ shape – which can cause blockages and damage to different organs.
It is an inherited condition which predominantly affects people from African and Caribbean backgrounds.
It has a devastating impact on the lives of patients and their families, including serious and life-threatening complications that can lead to organ damage and early death.
Without regular blood transfusions people living with sickle cell are at risk of severe and life-threatening complications (including stroke or multi organ failure).
There are currently 12,633 Black and mixed Black blood donors – this makes up just 1.5% of the total donor base.
16,000 new donors from the Black and mixed Black communities are needed to meet demands.
Campaigners also say that, despite guidance from NHS blood and Transplant, many trusts are are not prioritising patients with inherited haemoglobin disorders (such as sickle cell).
Chanel was diagnosed with sickle cell at nine months old. Growing up, she would say, ‘me and pain were birthed at the same time.’ She describes having sickle cell as living with an invisible disability, she gets particularly upset that people don’t understand the struggles she faces because her illness is not evident.
‘There is a serious lack of understanding,’ says Chanel. ‘People do not understand the daily challenges I face being a parent with this condition.
‘My child isn’t able to navigate the severity of my condition and the impact it has on both her and my mental health.
‘It’s not easy being a parent to a child who is active and has a huge and loveable personality. I don’t have the time to spend to enjoy bonding moments as I’m usually distracted with pain on a daily basis, which impacts my mental and physical activity.
‘Having to explain to my child that my body hurts so I won’t be able to cook, watch a movie, have tea and lunch dates, really burdens me and often makes me feel guilty.
‘I don’t have the time to spend to enjoy bonding moments as I’m usually distracted with pain on a daily basis.’ (Picture: Chanel Taylor)
‘When I do I have the energy levels I do try and make an effort and have some daughter and me time but that’s not very often.’
Chanel is the founder of Unsickle My Cells UK, a UK community group that provides support and signposting for both patients and caregivers.
‘Covid is impacting people with sickle cell at various levels – mental health, treatment, care plans, hospital visits,’ she says.
‘Patients passed away from underlying conditions related to sickle cell but reported as Covid complications, but also had treatment and operations cancelled, which also could have contributed to patients dying.
‘Where is the justice for those families who need peace and healing?
‘Having my regular treatment pushed back by weeks was a very detrimental experience for me. Everything changed, planned surgeries and operations were cancelled, which could have prevented further health triggers for so many.
‘Sickle cell has impacted my life in so many ways through different challenges, from childhood to adulthood.
‘It’s only really on reflection that I realise how my life has really changed without even noticing, and how much mental and physical pain I’ve endured – and how much I am still overcoming.’
Chanel is calling for better access to medication for all sickle cell patients, mental health and wellbeing support with therapy, an advisor to help with communication and form filling, patient support groups, and better standards of treatment whilst in admission.
She adds: ‘The number of patients dying because of negligence and dismissive attitudes towards the condition is rising because of failure to want to understand that sickle cell impacts each individual differently.’
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