#DisruptForSickleCell

A week ago today, I hosted my annual PIP Workshop at King’s College Hospital, in South East London, to kick off #SickleCellAwareness month. I am still on a high because the feed back I’m receiving from attendees indicates that we did a good job in educating people about PIP. I thoroughly enjoy hosting these workshops because I honestly believe the only way the Sickle community can begin to shift the welfare paradigm is to take the time to understand what is currently going on with welfare reform and how it is adversely affecting them.

The real heroes at the workshop were the patients who, although most of them were in a lot of pain and discomfort due to #SCD, still came out in huge numbers. The three hospital trusts in the South East of  London have some of the largest numbers of sickle cell caseloads, so it is truly an honour for me to be able to bring patients from the whole region together for these important educational events.

I’m sounding like a broken record with my many thank you messages but, seriously, I want to say thank you to everyone. I look forward to next year and hope that we can do even better. @STSTNetwork @KingsCollegeNHS @kingshealth @GSTTnhs @EvelinaLondon @gpadmore1 @MariaBerghs @SickleWelfare #DisruptForSickleCell #DisruptTheStatusQuo.

#DisruptForSickleCell

So, we are all set for my annual Personal Independence Payment (PIP) Workshop. Change of date and venue, but same message. Let’s do PIP our way. #DisruptTheStatusQuo. #DisruptForSickleCell.

1st September in the Boardroom at King’s College Hospital, from 11:30 to 16:30. For the first time, the Workshop is a South Thames Sickle Cell and Thalassaemia Network (STSTN) event. Which means anyone living in the South East of England with an interest in the welfare of people living with sickle cell disease (SCD) is welcomed to take part in this education day or workshop. Especially if you are living with SCD and you are on Disability Living Allowance (DLA), you may find the workshop useful because you will be asked by DWP to apply for PIP at some point in the near future. This workshop will help you prepare for that day.

Hope to see you at King’s College Hospital on 1st September at 11:30.

#DisruptForSickleCell

It’s nearly that time of year again. September. I will be hosting another Personal Independence Payment (PIP) workshop on the 8th September. My third year of doing this for the Sickle Cell community. There is still so little #awareness of Sickle Cell Disease (SCD) to the extend that welfare support for people living with the condition is almost nonexistent. In my small way, I started the PIP workshop three years ago to attempt to draw some attention to the common problems those living with #SCD encounter with PIP applications.

I like to call my workshops #DisruptForSickleCell simply because the status quo has not and won’t work for sickle cell so it is necessary to #Disrupt the process with a different approach. On the surface, PIP and SCD are miles apart when it comes to the descriptors used in the application process to award points, which then decides the outcome of a PIP application. I approach PIP from a perspective which narrows that gap considerably. Curious? Of course you are curious. If you are a sickle cell patient and you live in the London Boroughs of Lewisham, Southwark and Lambeth or you attend a Haematology Clinic at Guy’s and St Thomas’ NHS Foundation Trust, King’s College Hospital, or University Hospital Lewisham, then be super curious and come to one of my workshops.

I will post location details out soon. Definitely register and come along, especially if you are currently on Disability Living Allowance (DLA). PIP is the new benefit replacing DLA. Trust me, you need to know what PIP is all about.

New Blog Coming Soon

Wow. I have not been back on this page for such a long time I don’t even know where to begin. I have definitely been busy working backstage, so to speak, in the sickle cell community. The issue of awareness in sickle cell is one that still bothers me very much.
My next blog will certainly talk about Awareness. It is a big piece so I might publish it in three parts. Each part focusing on an aspect of what I think is not going so well in the sickle cell community regarding awareness. 

So… see you soon. 

My Name is Stephen

Written By Stephen Onimole, for Sickle Cell Welfare Forum

My name is Stephen Onimole and I have sickle cell anaemia. It has definitely been a struggle living with this disease. There have been so many times where I always ask why me, why do I have this, what have I done to deserve this? What is worse is things that come with this disease, such as avascular necrosis in the hip which I was diagnosed with recently and because I had this I had to go through so much pain and most stuff I used to be able to do by myself I was not able to do any more. I needed my mum to take me to school which was tough on my mum because she had to take my sisters to school as well. I needed my mum to dress me. And I also started having thoughts like why I exist and that if I did not exist my mum’s life would be so much easier. We tried to apply for disability living allowance. They denied us so we appealed to the tribunal. To get ready for the tribunal we visited a Welfare Advisor called Daniel Nyakutsey at the Hospital, who talked us through what was going to happen at the tribunal. He really helped us alot. On the day of the tribunal, mum and I sat down in the waiting area until we were called into a room. We sat down in this room infront of a judge a doctor and a disability person. We told them what they needed to know about sickle cell and the impact it has had on my life. We answered all their questions then they said they have heard everything and that they will call us back once they had made their decision. So we waited in the waiting room until they made their decision. And after a few minutes we were called back in and they said that they have made their decision and that we won, that we got the disability living allowance. We were very happy with the result and that after everything we got what we wanted.

By Stephen onimole

Sickle Life

I visit Ghana when I can to at the very least enjoy the sun, sea, the tasty food and as a reality check for myself. On my most recent trip, I had the honour of speaking to Dr Enam Sefakor Bankas, the founder of Sickle Life, a fantastic project in Ghana, educating people about sickle cell and encouraging them to get tested. I have been following Dr Bankas and Sickle Life on social media for some time so I do know that Sickle Life is doing some excellent work in Ghana; generating a lot of awareness and hopefully breaking down barriers around sickle cell and the stigma that goes with it. In my conversation with Dr Bankas, one thing that stood out for me was attitudes towards sickle cell disease from the very highest of places. This brilliant doctor who is sickle herself and obviously has first-hand experience with the challenges of this disease finds herself almost alone with only a small dedicated group of volunteers. They work hard, they work tirelessly and with no financial support from anyone it appears but they still get a lot done on pennies.
Get this, Hydroxyurea, which is available to sickle cell patients on the National Health Service in UK irrespective of its cost, is only accessible by wealthy sickle cell patients in Ghana. This is a country where 1 in 4 carries sickle cell genes and 15000 children are born each year with sickle cell disease. It shocked me to my core to be told that only the wealthy get the benefits of Hydroxyurea simply because they can afford it. Pay as you go health care system at its best, one might say. Majority of Sickle patients of course are desperately poor so for them, the future is bleak. It sounds so wrong but it appears sickle cell patients in the developed world and what they get for healthcare could be regarded as luxurious compared to what’s available in the third world. 

Ghana spends huge sums of money on nonsensical projects like an airport in the Volta Region of Ghana all in the name of infrastructure development and yet the health and wellbeing of a quarter of the population who happen to carry this uniquely deadly haemoglobin type does not feature anywhere close enough to the priorities the most important actors in this country worry about. I find this sad, depressing and irresponsible. “Ghana for you”, I’m always told. Nothing happens. Nothing would ever happen because that’s just the way it is, in other words. 

What can anyone do about such a dire situation? Sickle Life are certainly doing a grand job in my view but they need a lot of funding and support. The big guys at Ministry of Health need to recognise that sickle cell is a serious issue that needs their unwavering attention and the commitment of funds. A lot can be learnt from the experience of developed countries in terms of how they have approached sickle cell. But much more needs to be done in Ghana beyond just learning of lessons. A quarter of the population is walking around carrying the genes that causes sickle cell disease so it won’t be enough just to learn the lessons of the developed world and then do nothing. Anyone who knows anything about sickle cell disease knows that this is not a problem that would go away if there is no strategy to deal with it from the ground up. Sickle Life is doing exactly that but they cannot do it alone. They certainly cannot do it without funds and many more volunteers. 

Sickle Cell Disease is not some sort of curse inflicted by witchcraft or black magic as some people think. It is not a divine generational curse either but it sure would be around for generations to come if something is not done about it. We Africans need to stop looking down on sickle cell patients and stop treating them like societal rejects because they are not. They are real people like the rest of us. The sickle gene is a lot closer to home than we all realise. If we all talked openly enough about sickle cell, we would realise that we all know someone dear to us who is living with sickle cell and against all odds, is achieving big things and making a real difference, just like these very special individuals at Sickle Life. Wonderful people such as Dr Enam Sefakor Bankas and her small team of volunteers need our help and they need money. Let’s support her and Sickle Life so that they can continue to make a difference. 

Ultimately it is down to all of us to take responsibility for our lives and get tested. Yes, it would cost money to get tested but that could well be the most important investment we all make with regards to our health and wellbeing because sickle cell is a highly individual condition and its impact on all sufferers is a little different from person to person, but it is costly and can be devastating regardless. My message to everyone reading this is that don’t sit on the fence thinking it has nothing to do with you. Too often, I hear people say things like “it is not my portion” or “God forbid” etc. Information available to us at this point indicates that every 1 in 4 Ghanaian carries the sickle gene. Yes, every fourth person you’ve just counted, including you. Are you going to risk being the one who produces a child who is sickle? Do you really want to live with that guilt knowing that your child would live with unimaginable pain and uncertainty their whole life? Sickle Cell Disease would challenge you beyond anything you can imagine. I have seen the strongest of people break down in despair due to sickle cell disease. If we are going to be odd to our peers at least let’s be odd for the right reasons. Find the money you need for the test. If it takes you months to save up for it, at least you would go through the rest of your life knowing you did the right thing. You would have done the right thing for yourself, your community, people you love and for the love of mother Ghana.