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. 

Disrupt Welfare For Sickle

Millennials, Trending, Disrupt. These words are everywhere these days. I love this one, DISRUPT. Every time some smart person comes up with something original, imaginative, visionary or totally crazy which turns into a multi billion dollar business, everyone wishes it was they who dreamt up this disruptive idea. These crazy ideas and inventions change our lives and the way we do things in many ways. I don’t know how I managed to do anything pre World Wide Web because it seems I do nearly everything online. One could say the Web disrupted the way I live. In a good way of course. The Web is certainly an example of a progressive disruptive invention of our time. 
I was reading an article on LinkedIn and this word – DISRUPT – came up again so I got thinking. I’m a benefits person and sickle cell is like a love affair for me so naturally I linked the two up in my thoughts. How can the sickle community disrupt welfare support systems and bring about a truly serious change that would benefit the community? A change in the sense of the positive outcomes sickle cell sufferers get out of the welfare state. What if someone came up with the ultimate guide to help sickle cell patients apply successfully for the right welfare benefits in the most effective manner. Nothing particularly imaginative here but it would certainly DISRUPT the status quo which denies sickle cell sufferers welfare support. If this disruption results in better benefits outcomes for the community then, an imaginative idea or not, it would have been a good one for sickle.
Personal Independent Payment (PIP) is my specialty so that is one area I can DISRUPT. With the engagement or support of sickle cell sufferers, anything is possible. I’m hosting a free workshop in September to help sickle cell patients navigate the PIP application mayhem. Yes, PIP is not easy to get but that’s only when you don’t know what it is you are supposed to be doing in order to maximise your chances of getting it in the first place. I am pretty sure I won’t make my first million doing this but I still want to disrupt the application process by giving sickle cell patients the tools they need for successful PIP outcomes. 

Sickle cell disease is genetic, lifelong and progressively gets worse; no joke. In the UK, it is a disability as per The Equality Act 2010 but that’s probably where it ends for an unseen disability like sickle cell disease.The welfare system is somewhat more sympathetic to cancer patients than sickle patients. I take the point that cancer might well kill quicker than sickle cell disease. The damn thing killed my mother so I know how awful cancer is. Huge sums of money goes into cancer research so it can and does get cured. Not so with sickle. Sickle cell disease can and does cause stroke in even babies resulting in lifelong complex living so in my view, sickle cell disease is equally as devastating as cancer, if not worse. Consider this; every time a sickle cell patient has crisis, some form of damage is occurring inside that body. Internal organs are getting damaged slowly or quite fast in some cases. Extraordinarily painful. A lot worse than labour pain. Physically, emotionally and psychologically distressing. As a society, we don’t do too bad dealing with sickle pain management depending on where you live. However, we don’t seem willing to consider how we might invest in sickle cell patients so as to give them skills and tools that would enable them live independent fulfilling lives. In a very small but significant way, PIP helps to accord sickle cell sufferers a degree of independence. For example, a sickle cell patient on the motability scheme would be able to go about doing things including work, in winter without worrying about the risk of crisis being triggered by the cold weather. Instead of taking up a hospital bed to recover from crisis, which ultimately costs all of us hundreds of pounds each night, PIP would enable a sickle patient get help at home, at a fraction of the cost. A no brainer one might say but too simple for our policy makers to understand I guess. Sickle cell sufferers have an uphill battle with the benefits system all round, not just with PIP.

Instead of looking up to those with the political power and influence to change the welfare support landscape for sickle cell sufferers – something that may never happen perhaps due to this common misconception that sickle is a “black people disease” – let’s DISRUPT things ourselves, starting with PIP. So everyone who has registered via Eventbrite to take part in the free PIP Workshop I’m hosting on 17 September, I hope to see you there. Let’s cause some DISRUPTION. 

Sickle Cell And Fathers

June 19 marked both World Sickle Cell and Father’s day. In our quest to generate a bit more awareness of this uniquely challenging condition and celebrate fathers at the same time, it is perhaps appropriate to also look at fathers and the role they play in this story of Sickle Cell Disease and the ever increasing rate at which children are being born with Sickle Cell Disease. That good old saying that “it takes two to tango” comes to mind here. No child is born unless there is a father involved. Let’s face it,  even if the sperm was donated, it still came from a man, a father. Whether society wants to debate that, that’s a story for another day. I have been in the sickle environment for nearly two years now and l have seen great fathers who clearly love their children no matter what. They stick by their partners (the mothers) and together they provide a solid happy home for their sickle child or children. They recognise that they contributed to the child being born so they do their fatherly duties. Irrespective of who knew what about their genotype, these good fathers don’t disappear. They stick around and help care for their child. A child is a wonderful gift, sickle or not.

Sadly, that cannot be said about all households with a sickle child. Love, I hope would have been the reason mum and dad went along and had the child. If they knew the risks but still went ahead to birth the child, for the sake of love; I cannot comprehend why some fathers walk out at the first sign of trouble. Where does love disappear to when the child turns out to be sickle and divine intervention hasn’t healed them, as some parents think would be the case?Too many fathers are walking away from their sickle children and that is heartbreaking. Mothers are left alone to raise their childdren. They have to become super women in order to juggle work,  routine hospital appointments and the endless visits to A&E. Rent has to be paid, daily living expenses has to be found. In a cold country like UK, the cost of keeping that home warm enough for a sickle child is enough to put a single mother on low income or welfare support into debt. Raising a child is expensive as it is. Providing for a sickle  child is super expensive. You can’t just feed them whatever you find from the “reduced to clear”  section of your local supermarket. Being sickle means their immune system is fairly weak so parents naturally want to feed them something that would help keep them healthy and out of hospital. Sickle children need to be clothed in multiple layers to keep them warm enough in order to reduce the risk of cold induced crisis. The financial pressures are huge and in a single parent household, this could be seriously bad. Yes, single parent households in UK is nothing odd. We have hundreds of them.

The single parents I’ve come into contact with however, seem to be in that situation because fathers of their kids couldn’t deal with the endless sickle cell crisis of the kids. Love, the reason the coupling took place, resulting in a child being born, quickly becomes history. The sickle child is not perfect enough to be loved by daddy so he walks off to start yet another family. I am probably putting my foot in it. Yes, perhaps I don’t understand because I don’t have a sickle child. But do I need to have one in order to understand that walking out on a vulnerable child is not exactly the best love a father could give?

Before you ask what in the name of God I’m going on about? I’ll tell you what I’m going on about. There are too many single parents out there who found themselves alone simply because they did not produce what their men considered  to be a perfect child. I have seen too many and I have heard this story told many times, ok!! If you are reading this and you think I’m making assumptions, you are entitled to your opinion. This is really happening and it doesn’t help in reducing the stigma surrounding sickle cell disease. 

Walking out on a sick child is ugly, it is wicked and it is very sad. A child is a child. A gift to be treasured, loved and nurtured.When a child grows up not knowing what it is like to be loved and raised  by a father; when they are told daddy left them because they were not perfect; that surely cannot be a good headspace for any child to be in.