Wednesday, June 21, 2017

#SickleCell patients need #MentalHealth assistance - #Uganda

During the launch of a sickle cell clinic in Ngora district by Action Against Sickle Cell Disease early this year, a mother of two sons with the disease caught my attention.
She had crossed Lake Kyoga from Pallisa on a canoe boat with her two sons (six and eight years old) on a cold morning to come and seek treatment from the clinic opening that day. The boys looked as stressed as their mother. I wondered who comforted the other during times of trial.
She told me that she didn’t know sickle cell was not only going to affect her sons physically, but also mentally. Her sons have to endure insults from fellow pupils at school who tell them that they are going to die soon. Having to take drugs every day is a huge toll on the two young ones.
Now they have to cross the lake once a month to attend the sickle cell clinic in Ngora for treatment, review and drug refill. Mental health and sickle cell are like conjoined twins.
The mental health of people living with sickle cell disease, their parents, caregivers is always affected negatively. Being in pain all the time and taking drugs everyday, plus the associated stigma, takes a huge toll on everyone involved.
I remember in 2015 while at parliament for its health week activities when a parent approached me and narrated to me how her six-year-old daughter was asking her questions out of stress. She asked her why she had to go through excruciating pain, unlike her friends.
Every time the pain was too much to bear, she would ask: “Mom, if there is anything I did in your womb, tell me to say sorry”. The mother did not have an answer and just had to keep silent and cry in hiding.
These are just a few of the many stories that need attention, but are always swept under the carpet. Mental health of adolescents and young adults is a disaster in waiting. This has always been abated by the lack of a transition program from paediatric to adult healthcare of people living with sickle cell disease.
For many decades, sickle cell has been considered an infant disease. Many children born with the disease normally die before their fifth birthday. For example, in Uganda, 70 to 80 per cent of babies born with sickle cell disease annually die before celebrating their fifth birthday.
So, almost all programs in Uganda and globally have been centred towards managing infants. Those who survive into adolescents and adults are always left to fend for themselves.
The unavailability of paediatric-to-adulthood healthcare transition programs has exposed people with sickle cell disease to a number of psychological problems. The improved survival of people with sickle cell disease has created a relatively new class of adults with chronic pain more prone to anxiety and depression
Most doctors concentrate on managing pain in adolescents and adults with sickle cell disease without looking at the root cause. This always reduces the pain without totally taking it away.
Take an example of a young lady with sickle cell who has been refused by the man’s family because she is ‘sick’ and she gets into a crisis (an attack). That crisis will not just get cleared by administering painkillers without first getting to know the cause of crisis.
The result of lack of transition programmes has forced many sickle cell patients to become drug addicts, alcoholics and depressed. They have also shunned health facilities, resorting to ‘alternative medicine’.
Mental health issues amongst sickle cell patients are many but have not received the attention it needs. On top of receiving less attention from the medical personnel, society has also complicated the lives of people living with sickle cell disease through stigma and discrimination.
It is more likely that people with sickle cell disease may bear a triple burden in that they may receive unfair treatment at workplaces, educational institutions and in the healthcare system.
Statements such as “you are a drug-seeker” are more common from healthcare professionals. They are always accused of seeking treatment under false pretence. This greatly affects their self-esteem and integrity.
There are a number of societal beliefs and treatment of people with sickle cell disease that have a negative influence on their mental health.
There are physical differences such as lower weight, short stature and delayed sexual development compared to peers, which leads to stigmatization. Sickle cell disease can be a stigmatizing condition associated with negative labels that are attached to negative behaviours, including witchcraft.
To handle the issue of mental health in sickle cell disease patients, all stakeholders need to come together and have a working solution. There is an urgent need for awareness about mental health and sickle cell which has been missing in all programmes.
All hospitals and health centres that house sickle cell clinics should have psychiatrists or clinical psychologists to handle the important part of mental health.
The current increase in longevity has resulted into physicians for adults treating pain resulting from the disease for which they have limited training and experience.
Patients’ satisfaction with pain management, community awareness of sickle cell disease, basic doctor-patient communication skills, and a comprehensive paediatric-to-adult-healthcare program can help in managing mental health problems of people living with sickle cell disease.
As the theme for the 2017 World Sickle Cell day stated - Doing things differently – let’s all handle the mental health of people with sickle cell disease differently.

The author is the executive director at Action Against Sickle Cell Disease.

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