SICKLE LIFE PATIENT SUPPORT GROUP.

wp-image-1028541320jpg.jpgEnsuring healthy lives and promoting well-being for all at all ages is a task that requires all stakeholders in the health sector to take active roles to achieve.
With specific focus on maternal and child health as well as HIV/AIDS, malaria and other diseases, the Sustainable Development Goals (SDG) serve as a guide to cause change and improve health outcomes globally.
 
Sickle Life as a health advocacy group focused on educating and informing the public about Sickle Cell Disease takes our role in achieving SDG 3 seriously. At the beginning of 2018 we launched a patient support group in response to an obvious gap in the management of Sickle Cell Disease in Ghana. Having received several calls from patients, parents and relatives, as well as “referrals” from health workers, we took on the task of creating a safe space for persons living with Sickle Cell Disease to interact and learn from each other. This group currently numbering 50 and with participants from Ghana, Nigeria, US, UK and the Caribbeans has had very interactive discussions on our WhatsApp platform on issues pertinent to persons living with Sickle Cell Disease such as myths surrounding Sickle Cell Disease, drug use and abuse, dating options for persons living with Sickle Cell Disease etc.
 
Our first support group meeting held on Saturday 17th March, 2017 at the Ghana Institute of Clinical Genetics, Korle-Bu Teaching Hospital (Sickle Cell Clinic) on the topic ” Advocating for ourselves, relations and other patients” was led by Mr. Daniel Nyakutsey a member of the support group, patient advocate and welfare adviser for a Sickle Cell Disease and Thalassaemia centre in the United Kingdom and Dr. Olayemi, patron of the support group and the immediate Past Head of the Department of Haematology at the Korle-Bu Teaching Hospital. Daniel, who provides welfare support for patients in 3 boroughs (districts) is responsible for the welfare of about 17,000 patients. His support, beyond providing assistance with health care benefits includes assistance with housing, jobs and immigration issues.His approach to providing support for persons living with Sickle Cell Disease is to emphasize that Sickle Cell Disease is not limited to brief episodes of pain called crisis. In his experience patients do not receive the welfare support they deserve because Sickle Cell Disease is misunderstood.
 

Patients are assumed to be generally well and fully functional at all times till they have a crisis. However some patients live with a baseline daily pain which makes performing daily task quite difficult. Some have frequent pain episodes which they manage on analgesics at home and then proceed to hospitals when this pain cannot be managed further. Still others push through extreme pain daily to carry on with life. Sometimes it takes an experienced person to catch the wince through their smiles and on probing you discover the person is in pain, sometimes moderate to severe pain.

A person may be smiling through pain that they grade as 6/10. Pain that will knock others out, yet we choose to ignore all that and only consider how many times they have to be hospitalized for pain. It is a great disservice to assume that persons living with Sickle Cell Disease are completely pain-free or well and only fall sick 3 or 4 times a year thus do not need year round support.It is a chronic medical condition which has many complications. Some patients who have Avascular Necrosis and require crutches for mobility are considered fully functional because they are mobile, with the pain and all. However we fail to consider that by supporting themselves with crutches they are limited in using their arms for other purposes. For example, how does such a person cook his meals if he can’t support himself at the same time. Does it affect the time he spends cooking, does it affect the quality of the food, does that then affect his health, does all the associated stress then result in more crises?
This is how Sickle Cell patients must be viewed. The disease ought to be viewed holistically so patients are not deprived of assistance.

Admittedly, there are challenges. These challenges are not unique to the UK and may be the same here. The biggest being bureaucracy, low funding and ignorance about the condition.
The best way to be effective advocates is to collaborate with others who are creating awareness about Sickle Cell Disease through activities such as school outreaches or effectively using social media as Sickle Life is doing.
Also, patients need to speak up. They need to speak to each other and to the people in authority; assembly men, members of parliament etc.
They need to get the attention of the media and then they need to demand change. Ask for policy on Sickle Cell Disease, a national strategy, budgetary support etc. We all need to step up and create the change we seek.

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Dr. Olayemi in his presentation highlighted 2 main obstacles in awareness creation and supporting persons living with Sickle Cell Disease in Ghana.

Lack of funding and perceived stigma limit how much work is done.

He mentioned that being a resource deprived country, the government and national agencies as a matter of necessity need to be selective in utilization of funds. Unfortunately Sickle Cell Disease is not considered a significant enough risk / threat for policy makers thus does not receive the funding and support required.
This translates to things as fundamental as low/no coverage on NHIS. This is very unfortunate for a chronic medical condition which affects so many people in this country.

Sickle Cell Disease patients are at risk of several complications in multiple organs. They need annual tests to screen for these complications and initiate management yet attempting to undertake this exercise runs into thousands of Cedis because most simple lab tests are not covered by insurance hence most patients leave it all to fate and present later with complications which are costlier and more difficult to manage.

Stigma prevents well placed members of society who have the condition or children with the condition from speaking up. Every one of us is in one way or the other linked with someone who has Sickle Cell Disease yet we sit back and do nothing. Nobody is willing to talk about Sickle Cell Disease, nobody want to disclose their status hence we are not generating the conversations that need to be had.
The media is silent about Sickle Cell Disease because we are not making enough noise. Politicians do not show up for meetings with us because we have not made enough noise. They do not appreciate just how many people in Ghana are affected by Sickle Cell Disease, how this can affect their electoral fortunes.

It is about time we got heard. The oldest patient at this Sickle Cell Clinic is 92 years. Patients can live full lives if we provide adequate support. We need to remember that much as we complain about management of Sickle Cell Disease in Accra, the same 25% trait and 2% annual deliveries is present across Ghana. Somewhere across a river with a broken bridge there is a child living with Sickle Cell Disease who will never have access to a Haematologist and will die before the age of 5 years in 2018 in Ghana.

If patients in Accra cannot access quality care or be managed by a Haematologist, how much more those across rivers.
It is about time we spoke up and gave Sickle Cell Disease the attention it needs nationally.

wp-image-987973291jpg.jpgQuestions from the participants ranged from how to overcome bureaucracy and cause policy change, accessing funding for projects, implementation strategies, overcoming stigmatization etc. The speakers provided answers to these and more after which participants interacted with each other while having refreshments.

The support group meeting was a very useful learning experience for all present. Team Sickle Life learnt a lot from our speakers and are very grateful to them for making the time as well as for all others present for the success of the event.

Please join the Sickle Life Patient support group by clicking on this WhatsApp Group invite link.

 

Thank you very much.

Sickle Life.

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