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.

My reaction to an ignorant comment to the news from the Sickle Cell Foundation of Ghana that 15000 children are born each year with sickle cell disease in Ghana

First published on 29 May 2016 by Daniel Nyakutsey on http://www.sicklecellwelfare forum.com

Sickle Cell Welfare Forum

Nobody can stop sickle cell or even hope to reduce the rate at which children are being born with it until individuals take responsibility, get tested and understand the basics of it. Far too many people get caught up in this idea of love first and everything else second. Then there are those who go on about God being in control therefore sickness is not their portion. Sickle Cell disease does not come to anyone because it is their portion or because they chose a partner they did not love. The issue of faith and God being a healer to some people seems to be a good enough reason they don’t do the right thing even when they are aware of their status and the risks that therefore carries. They forget that the same God has given everyone the divine gift to make a decision not to risk giving birth…

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Switching From DLA To PIP

If you are getting DLA and its been awarded to you for life or for an indefinite period, bear in mind that DWP intends to have all existing DLAs including life or indefinite awards reassessed. DWP will contact you and ask you to complete a form for reassessment but what DWP will not tell you is that, although you have an indefinite DLA award, they will terminate it if in their view you are not sick enough. So one minute you have DLA, a blink of an eye and you’ve lost your entitlement. You are probably wondering how could they do that when your condition hasn’t changed? If anything, it may have gone worse? Well, quite simple really. The thing to remember is that PIP is a points based system whereas DLA isn’t. So after you have completed the PIP form for your DLA to be reassessed for conversion to PIP, you will be given points at the medical examination that you may be asked to attend. On some occasions the assessment would be done in your home. You need to score minimum 8 points to get the standard rates and minimum 12 points to get the enhanced rates of PIP. If you are awarded less than 8 points as a result of the medical assessment; guess what? You’ve just lost your indefinite DLA award. You will be left with no DLA and no PIP.My advice to you is very simple. Start getting ready for that day DWP is going to ask you to switch to PIP. Keep all your hospital notes, reports, test results etc handy. Get yourself a diary and start recording how your condition is affecting your ability to do simple day to day activities. Citizens Advice has a good template you can download and use for these notes. When you receive that PIP form, please get help from someone who knows how to complete this form as good as it can be. Ensure you return it to DWP with up-to-date information about your health and its impact on your day to day activities. Your hospital letters, reports and your diary needs to go with the completed form to DWP.

The PIP form would seem like a straight forward form but please don’t take it for granted. Get help to complete it because it is infact a very complex form. Finally remember, PIP is all about the points. The first 6 questions on the form are the easiest to score points on so try and get those right. It gets harder from question 7 onwards because your cognition becomes a key factor on whether you are awarded points or not. So in the case of sickle cell where to an extent, the bulk of the problems might be pain related therefore making it easier to score on the first 6 questions, if you are not able to explain how the chronic nature of pain inflicted by sickle cell might adversely impact your cognition and therefore your ability to carry out daily activities reliably, then you would risk loosing valuable points on questions 7 to 11.

If your current DLA award gives you the higher rate on mobility component, then the final two questions on the PIP form (questions 11 and 12) are your only chance to retain this component. As I said earlier, if you are not able to make the case that sickle cell pain adversely affects your cognition, then there is a very high risk possibility that you will not score any point on question 11. I can tell you that all the cases that I’ve been involved with, nobody scored points in question 11. So if you have a motability vehicle through your DLA, which naturally you would want to keep after the switch to PIP, your job to make the minimum 12 points you need for the enhanced rate of PIP, the equivalent of DLA mobility component higher rate, becomes very difficult and almost impossible. Because you now have to make your entire 12 points from the very last question.

Those of you who follow the Welfare news coming out of DWP would have heard this in the last few weeks that nearly 14000 DLA claimants have lost their motability vehicles, obviously because they didn’t make enough points on the mobility questions. Getting help from welfare support workers does not necessarily mean you would be awarded the points for the mobility component but at the very least, you would be better prepared.

PIP generally is a hard benefit to get but it can be done. Before you even begin to complete the form, ensure you know how the points are awarded. DWP calls the points system, “descriptors”. Please Google “PIP descriptors” for a detailed explanation of the descriptors. This will help you to organise information correctly on your PIP form. To put it simply; the choice of words you use to describe how your condition adversely impacts your ability to do simple day to day activities reliably, both on the PIP form itself and at the medical assessment consultation, is effectively what would determine how many points you are likely to score. 

(First published on 19 November 2015 on: http://www.sicklecellwelfareforum.com)

My Young Hero

I would like to take a moment to salute a brave 16 year old boy and his mother who took on this horrible system of welfare support decision making and won. A system that would rather see a boy in so much pain. A boy diagnosed with Avascular Necrosis, a boy agonising over the fact that he has to undergo surgery every 15 to 20 years to fix his damaged joints, a boy already emotionally distressed over what his life is worth to this world. That little, physically weak but intelligent 16 year old and his very brave mother took on this awful system in court and won. You know who you are, I salute you both, especially my 16 year old hero. 

Dedicated To Jane.

You were 19, beautiful, intelligent, full of promise and all you wanted to do was to become a successful Accountant so that you could put a smile on your mother’s face again.

Jane didn’t know she would die of Sickle Cell complications. Not a single soul in her family knew she had this genetic condition. She was always anaemic and always had problems with pains inside the bones in her legs. That’s all the doctors ever told her mother, so mother didn’t know Jane had sickle cell disease although many of her children didn’t live to be 19. Even if mother knew anything about sickle, could she have done anything to save Jane? Jane’s passing tore her family apart. Everyone blaming everyone for something they did or didn’t do. There were those who thought she was pregnant and tried to abort it. Crazy. Her estranged parents sure were at each other’s throat. Father’s grief was more of shame for failing to be a real supportive father. Wasn’t there when Jane really needed him. Too late now, father.

Even the little old lady sitting across the street every morning minding her own business, wondering where her first meal of the day would come from got her usual share of blame African style. She is the local “WITCH” killing everyone who had potential, with her witchcraft. Now she killed Jane, the one shining star left of her mother’s children. How very shameful of this little witch.This is how sad it was. Someone went through their entire life in pain and when they finally died nobody talked about sickle cell. Not the doctors, not the families, not the community the deceased lived in. The witch across the road had done it again was all one heard. Over and over again the same story was the story in this community. “The witch who kills everyone”. Even those who knew about sickle cell disease would rather attribute the devastating effect of it to this witch. Maybe sickle cell disease is a witch. What ever form this particular brand of witchcraft takes, I’m certain it is not that little old lady across the road from Jane’s home killing anyone.

Who would marry our kids?, they say. At least in their view their children would find husbands and wives as long as nobody finds out about their deadly secret. Sickle Cell. That revolving door just keeps going round and round without a gatekeeper to slow it down. The witch is the cause of the pain, the crisis, the isolation, the stigmatisation, the marginalisation, the mental distress and more. It’s always that evil heartless, hungry little old lady across the street. That Witch. Jane is not here but the witch still sits in the same spot, patiently looking around for her next victim. She would most likely find one too, for as long as enough parents and young people are walking around guarding their secrets hoping to find a life partner before that dreadful story is told, if it actually ever gets told.

Jane is now just a name we all remember every now and then. Her pains are gone for sure. Set free from crisis, the cycle of pain that every sickle cell patient I know would gladly love to do without. At least I hope where ever people go after this world won’t be infested with crisis and discomfort everyday. That witch across the road would have to go to that place as well before she can hurt Jane again. 

Sadly, little old lady sitting across the road or not, there would be plenty more victims because this community still does not talk openly about sickle cell. The family secrets would remain so. The kids would continue to find partners, if they live past 19. Jane is gone, relaxing in a better place I hope. 

I miss you, your innocence, your beautiful smile and your tall gorgeous self. Your dream to see mother smile again would never be achieved. Who else is there? Mother may never know happiness, Jane, because you were her last hope and now you are gone, forever. Rest in peace my good friend. 

Disrupt Welfare For Sickle – Keep It Simple

I’ve worked within the sickle cell community now for a little under two years and am pleased with what we’ve achieved so far in the area of welfare support; personal independence payment (PIP) in particular. As I’ve always said, PIP is not the easiest of benefits to get because it was designed not to be easy to get. However, we are getting good results for our clients and that’s really fantastic. In my view, we are achieving these outcomes because of the approach we’ve taken. Sickle cell disease as a condition, fluctuates wildly in the level of pain and discomfort sufferers experience each day. All too often, everyone focuses on what sufferers are unable to do during crisis or what they can do during good periods. This in my view is not the best approach for a condition like sickle cell which in most people, inflict daily pain like nothing we know. Crisis happens to be the extreme but does not occur daily in majority of cases. Therefore, by focusing on crisis, we forget the most important aspect of the application process. PIP is all about points, especially at the consultation stage. To get the points, we need to firstly, explain the limitations sickle cell disease places on our ability to do simple day to day activities most of the time, not just during crisis. Secondly, our explanations need to fit within prescribed set of phrases referred to as “descriptors”. This is the key to our success with PIP applications. We’ve simply, rightly, moved the emphasis away from crisis and focused instead on the constant daily pain and discomfort experienced by most sickle cell patients at levels that their peers cannot possibly live with daily. Simple strategy but it gets the results.
I certainly would not give anyone a cast iron guarantee on a successful PIP application but I do know that I can get you better prepared for the two key stages of the application process; the form completion and the consultation. If you can go into the consultation prepared and ready to answer the questions as per the descriptors, you will extract the points. You would therefore have 70 to 95 percent chance of getting a better outcome. What rate of PIP you get paid all depends on your ability to execute the strategy on the day. That’s it. Guaranteed. My first sickle cell focused PIP workshop is now fully subscribed but I plan to hold more. You have absolutely nothing to loose by attending one.