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.