A Lack of Awareness About Benefits Can Harm Sickle Cell Patients

Tito Oye avatar

by Tito Oye |

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I recently posted on social media about a benefit that London residents with sickle cell disease may be entitled to, and its reception made me both happy and upset.

As a Londoner, I’ve been using a disabled persons freedom pass for years. Provided by the U.K. government, this travel pass allows people with disabilities to use various modes of transportation in the city free of charge, including trams, buses, and the Tube. Unfortunately, many of those who may be eligible are none the wiser.

My tweet was retweeted thousands of times, and messages came flooding in from people with sickle cell who wanted to know more about this benefit.

I’ve been spending the majority of my free time going through messages and supporting people with their applications. I love doing this, but I am disappointed that this information isn’t more readily available.

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Sometimes it feels like sickle cell isn’t respected. This may be due to several factors, but I believe it’s ultimately due to a lack of awareness. People typically don’t know what sickle cell is, so they don’t know how serious it is. Many automatically count us out of benefits that people with more visible disabilities receive, leaving us to fend for ourselves. If we want these benefits, we often have to jump through hoops to prove how our health affects us daily.

The lengths we must go to to prove that we qualify do more harm than good. The high barriers to entry and the tricky wording used to define disabilities may deter the very people who need such benefits from applying in the first place.

I found out about the freedom pass by word of mouth, and I now do what I can to pass this knowledge on. If you live in London and want to know more about the pass, please reach out to me.

Do you receive any benefits that help you manage your health? Please share in the comments below.

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Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.

Comments

Troy Joyner avatar

Troy Joyner

Hello, I live in Bristol so no travel pass here unfortunately.
A few years ago I applied for DLA and as expected I was turned down as I try to lead a life without depending on my wife all the time. I'm now 58 and the amount of tablets that I take and when I take them is all down to my wife sorting them into a dossett box every day as my chemist doesn't offer this facility. I also have to pay for all my prescriptions even though I'm on the medication for life. How is this fair. Is there anything thing/one out there who can assist with the DLA forms, as they (DLA team) advised me to appeal against the decision! Yes really. But it depresses you having to document your own illnesses and issues. Catch 22 situation I suppose.
Yours in hope.

Troy.

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Richard B avatar

Richard B

I am not sure if this is the right forum, recently someone posted how people with sickle cell could apply for freedom pass within London. If anyone can assist me to apply for my son will be very much appreciated. Thank you for this wonderful page.

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Snr Comr Randy avatar

Snr Comr Randy

Keep it up. I love your good work of helping dose with sickle call.

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A Smith-Johnson avatar

A Smith-Johnson

Thank you for sharing. I do not know about the freedom pass but as a SCD patient, I completely agree that because SCD is not a more visible disability, it is often discredited. I've also felt as a SCD patient the damaging burden to prove my disability, however, this is something I am consistently working on changing.

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