People with sickle cell feel ‘neglected’ and are unable to access treatment (Picture: Getty Images)
A new report has revealed the dire experiences of people living with sickle cell in the UK during the Covid crisis.
Sickle cell disease is an inherited blood condition which predominantly affects people from African and Caribbean backgrounds.
People with this illness fall into the ‘extremely vulnerable’ group, so have been forced to shield for the majority of the pandemic. But a new study has found that many have been struggling to receive adequate treatment and support, and some have been left in pain for months at a time.
The report, published by the All-Party Parliamentary Group for Sickle Cell and Thalassaemia,
50.5% said that Covid-19 had affected their access to healthcare services in their area. And just over half of all respondents revealed that their usual health pathways were being disrupted by the pandemic.
The report authors say that people with sickle cell are experiencing distress and panic because of not being able to effectively manage their condition.
They add that people with sickle cell feel a sense of ‘neglect’ and many say they have not had a blood test for months.
Crucially, of those who hadn’t been able to access their healthcare services, 20.5% said this had itself brought on a crisis – which is an episode of severe pain caused when sickle cells stick together, causing blockages in the small blood vessels.
A sickle cell crisis can be excruciatingly painful and extremely dangerous.
What is sickle cell?
Sickle cell is a disorder of the haemoglobin in the red blood cells.
People with sickle cell disorder are born with the condition, it is not contagious. It can only be inherited from both parents each having passed on the gene for sickle cell.
The main symptoms of sickle cell disorder are anaemia and episodes of severe pain. The pain occurs when the cells change shape after oxygen has been released. The red blood cells then stick together, causing blockages in the small blood vessels.
These painful episodes are referred to as sickle cell crisis. They are treated with strong painkillers such as morphine to control the pain.
People with sickle cell are at risk of complications stroke, acute chest syndrome, blindness, bone damage and priapism (a persistent, painful erection of the penis).
Over time, people with sickle cell can experience damage to organs such as the liver, kidney, lungs, heart and spleen. Death can also result from complications of the disorder. Treatment of sickle cell mostly focuses on preventing and treating complications.
The survey collected data to determine whether those living with sickle cell are receiving the right information, and whether the government guidance and support is suitable.
One respondent explained that ‘outpatient appointments have moved to phone calls, GP appointments cancelled. I have not been able to go to chemists due to shielding, so I had to manage pain for a month while waiting for my next check-up.’
Another said that it was ‘harder to get prescriptions and also getting medication delivered on time to manage my sickle cell. I have not been able to have regular blood tests to help monitor my condition.’
Respondents also had an overwhelming sense of fear about the future, and how these delays and missed appointments will affect their long-term health.
One person said: ‘I’m not sure how I’m going to get a new prescription for Hydroxyurea, or any of my other medication. And those not fortunate enough to have support networks having to take the biggest risk of them all and fend for themselves.’
Having to conduct appointments over the phone has also created problems for some due to problems with communication.
One person said their ‘GP refused face-to-face appointment, so I ended up in hospital with severe pneumonia because they didn’t inspect my chest.’
‘Intrinsically, Covid-19 does not discriminate, pandemics don’t choose their victims and a virus does not select its host,’ reads the report conclusion.
‘But what is safe to sayy, is that in a society where structural inequalities exist -whether that be by socioeconomic background, race, gender, disability – Covid-19 does discriminate.
‘Though it has not been proven beyond doubt that having sickle cell decreases your chance of survival, your race and socioeconomic background have been proven to increase your likelihood of contracting the virus. If you take a member of the sickle cell community, who is BAME, has sickle cell and from a lower socioeconomic background, they are more likely to suffer from Covid-19.
‘Consequently, Covid-19 does discriminate, it has served to exacerbate and amplify the health inequalities that already exist.’
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