Mental health issues in sickle cell: The elephant in the room

 

Uganda joined the rest of the world on Monday, June 19, 2017, to commemorate World Sickle Cell Day. The theme is: "Doing things differently in 2017".

 

As per the Day's theme, it, therefore, call for us all to handle the mental health of people with sickle cell disease differently.

 

On March 30, 2017 during the launch of sickle cell clinic in Ngora District by Action Against Sickle Cell Disease, a mother to two sons with sickle cell disease sought my attention. She had crossed Lake Kyoga from Pallisa district on a canoe with her two sons aged six and eight years on a cold morning to come and seek treatment from the clinic opening that day. The boys looked as stressed as their mother. I was wondering who comfort each other during the times of trials.

 

She told me that she never got to know that sickle cell was not only going to affect her sons physically but also mentally. Her sons have to endure insults from fellow pupils who tell them that they are going to die soon. Having to take drugs every day is a huge toll on the two young boys.

 

Now they have to cross the lake once a month to attend the sickle cell clinic in Ngora for treatment, review and drug refill. To young boys of six and eight years, this is too much to bear.

 

Mental health and sickle cell are conjoined twins which are difficult to separate. The mental health of people living with sickle cell disease, their parents, caregivers and healthcare professional taking care of them is always affected negatively. Living with sickle cell disease, which is a blood disorder, does not mean that it affects only the blood but also affect the person psychologically.

 

Being in pain all the time and taking drugs everyday plus stigma associated is a huge toll not only on the adult patients but also the children. I remember in 2015, while at the Parliament Health Week, a parent approached me and narrated to me how her six-years-old 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 asked her mum: "Mum 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 out of her sight.

 

These are just a few of 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 transition programme from paediatric to adult healthcare of people living with sickle cell disease.

 

For many decades, sickle cell has always been considered as an infant disease. Many children born with sickle cell disease have been dying below the age of five years. For example, in Uganda, 70% - 80% of 20,000 babies born with sickle cell disease annually die before celebrating their fifth birthday.

 

So almost all programmes 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 programmes 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 just reduces the pain without taking it away totally. Take an example of a young lady having sickle cell who has been refused by the man's family just because she has sickle cell and get into a crisis. 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 programme has led to many sickle cell patients become addicted to drugs, alcohol and getting lonely. They have also shunned health facilities resorting to ‘alternative medicine' which have become a problem including not responding to conventional medicine.

 

Mental health issues amongst people sickle cell patients are many but have not received the attention it needs. On top of receiving less attention from the medical personnel, the society has also complicated the lives of people living with sickle cell disease. There is a lot of stigma and discrimination of people with sickle cell plus their families in schools and communities.

 

It is more likely that people with sickle cell disease may bear triple burden in that they may receive unfair treatment at workplace, educational institutions and unfair treatment in the healthcare system.

 

Many sickle cell patients are having their self-esteem, integrity and health compromised when they need emergency care.

 

Under treatment of pain and statements like ‘you are a drug seeker" are more common from healthcare professionals. They are always accused of seeking treatment under false pretence. 

 

There are number of societal beliefs and treatment of people with sickle cell disease that has negative influence on their mental health. 

 

There are physical differences such as lower weight, short stature and delayed sexual development compared to peers which lead to stigmatisation. Sickle cell disease can be a stigmatising condition associated with negative label that are attached to negative behaviours including witchcraft.

 

To handle the issue of mental health in sickle cell disease, stakeholders need to unite for a working solution. There is an urgent need for awareness about mental health and sickle cell, which has been missing in all programmes. All hospital 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, understanding of psychological process associated and a comprehensive paediatric to adult healthcare programme can help in managing mental health problems of people living with sickle cell disease.

 

As the theme for 2017 World Sickle Cell Day is "Doing things differently" let's all handle the mental health of people with sickle cell disease differently.