My son Benjamin was born weighing only 3 pounds. He stayed in the NICU for 7 months. It was challenging and financially draining. We had a kindergartener and toddler at residence, although also viewing Benjamin at the hospital each individual working day.
When Benjamin was capable to come household, he experienced a full parenteral nourishment (TPN) central line, an ostomy bag and a gastrostomy tube (G-tube) to get nourishment.
By the time he was 1, he was in a position to try to eat and have the ostomy bag and G-tube taken out. Life was starting to sense usual.
At 2 decades outdated, he jumped into a foam pit at a birthday occasion and arrived out keeping his head to the aspect. When I asked if he felt damage, he stated no. I waited a couple of times considering he had pulled a muscle in his neck. But the head tilt remained.
When I took him to his pediatrician, they sent us to bodily therapy. Soon after two months, practically nothing had improved. We observed a neurologist who reported he seemed delighted and healthier with no other indicators other than a head tilt. The neurologist ordered an MRI to be protected, but I remember her telling me that she did not feel they would find everything.
Right before we remaining the medical center parking whole lot, I gained a call saying the MRI final results were being in.
A childhood mind tumor diagnosis
That is when Benjamin was diagnosed with a sort of brain tumor named a Grade 1 pilocytic astrocytoma. His oncologist at our regional clinic advisable he start chemotherapy but prompt ready on radiation remedy to give his physique and mind time to develop so they could obtain the tumor greater.
A number of months later on, tests showed the tumor had developed. His care workforce resolved to work. Benjamin experienced just turned 3 years outdated when he underwent brain surgical procedure. He then experienced two weeks of inpatient rehabilitation. This was tough on our spouse and children due to the fact we had two small ladies at home.
Just after 6 decades of striving various forms of chemotherapy, together with two scientific trials, we have been ready to test radiation treatment. I understood the tumor was still escalating and Benjamin was obtaining signs or symptoms such as sleepiness and amplified face paralysis. So, we made a decision to just take a leap of religion, belief God and go to MD Anderson to have his tumor treated with proton beam treatment.
Proton therapy is an sophisticated type of radiation cure that utilizes a beam of protons to produce radiation instantly to the tumor, destroying most cancers cells though sparing nutritious tissues. As a final result, it minimizes facet consequences to protect against extended-phrase difficulties. Since of the bodily attributes of proton beams, it is ideal for pediatric most cancers patients with tumors found close to expanding tissues, particularly in the brain, backbone, eyes, ears or mouth.
Perseverance via proton treatment treatment
In Sept. 2022, when Benjamin was 10 a long time previous, he began proton treatment at MD Anderson below the treatment of Dr. David Grosshans. He had a great practical experience at MD Anderson Proton Remedy Middle. Benjamin advised me it was the most straightforward cure he has been by way of. He bonded with his treatment team and loved using naps in the course of procedure. On Nov. 4, he celebrated his past cure by ringing the gong.
All through remedies, he did not have side results. But following he concluded proton treatment, he experienced some numbness on the remaining facet of his entire body and weak point in his leg. He carries on to go to actual physical treatment and that assists boost his energy.
Benjamin is performing effectively, and the tumor is stable. He is doing work tough to get caught up at faculty. Missing college for therapy influenced his studying the most.
My suggestions to other moms and dads is to carry a reserve and a snack to remedy. Preserve a watchful eye on the affected individual and most of all, bear in mind to acquire it a person day at a time.
“JamaiCAN,” reads a mural at one of the entrance gates to Bellevue, Jamaica’s only psychiatric hospital. The name of the old powder-pink building near Kingston’s upmarket waterfront is recognisable to any Jamaican and is shrouded in stigma.
A mural announces the mental health campaign ‘JamaiCan’ at Bellevue psychiatric hospital, Kingston. Photograph: Courtesy of Bellevue psychiatric hospital
Built as a colonial lunatic asylum in the 19th century, it had been a tool of political repression, serving as prison for Rastafarian luminaries, forefathers of pan-Africanism, and other Jamaicans who challenged British racial oppression. After independence, media coverage of Bellevue was dominated by stories of poor treatment of patients and threadbare facilities.
Staff and directors are today determined to transform the hospital into a modern treatment centre, building on decades of Jamaica’s pioneering mental health policies. But one barrier keeps emerging: resources.
“It’s really challenging to get focus on non-communicable diseases, and mental health is a fraction of the focus on non-communicable diseases,” says Ishtar Govia, a member of Bellevue’s board of directors and a researcher at the University of the West Indies.
Quick Guide
A common condition
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The human toll of non-communicable diseases (NCDs) is huge and rising. These illnesses end the lives of approximately 41 million of the 56 million people who die every year – and three quarters of them are in the developing world.
NCDs are simply that; unlike, say, a virus, you can’t catch them. Instead, they are caused by a combination of genetic, physiological, environmental and behavioural factors. The main types are cancers, chronic respiratory illnesses, diabetes and cardiovascular disease – heart attacks and stroke. Approximately 80{08cd930984ace14b54ef017cfb82c397b10f0f7d5e03e6413ad93bb8e636217f} are preventable, and all are on the rise, spreading inexorably around the world as ageing populations and lifestyles pushed by economic growth and urbanisation make being unhealthy a global phenomenon.
NCDs, once seen as illnesses of the wealthy, now have a grip on the poor. Disease, disability and death are perfectly designed to create and widen inequality – and being poor makes it less likely you will be diagnosed accurately or treated.
Investment in tackling these common and chronic conditions that kill 71{08cd930984ace14b54ef017cfb82c397b10f0f7d5e03e6413ad93bb8e636217f} of us is incredibly low, while the cost to families, economies and communities is staggeringly high.
In low-income countries NCDs – typically slow and debilitating illnesses – are seeing a fraction of the money needed being invested or donated. Attention remains focused on the threats from communicable diseases, yet cancer death rates have long sped past the death toll from malaria, TB and HIV/Aids combined.
‘A common condition’ is a Guardian series reporting on NCDs in the developing world: their prevalence, the solutions, the causes and consequences, telling the stories of people living with these illnesses.
“Donors like to put their money towards things that get quantifiable results,” Gribble says. “With mental health that is more difficult to measure than with viruses, for example.”
However Jamaica, unlike many low and middle-income countries, has been at the forefront of mental health innovation over the past 50 years. After gaining independence in 1962, Jamaica became one of the first countries in the world to take decisive steps to deinstitutionalise its mental health system and integrate it into primary healthcare, despite limited resources.
Today, up to 80{08cd930984ace14b54ef017cfb82c397b10f0f7d5e03e6413ad93bb8e636217f} of Jamaicans with chronic mental illness are not hospitalised in Bellevue but receive treatment in local health centres or at home, thanks to mobile teams made up of psychiatrists and specially trained nurses.
This approach provides a useful task-sharing model for countries looking to restructure their mental health services, says André van Rensburg from the University of KwaZulu-Natal in South Africa, who has been researching deinstitionalisation in low and middle-income countries.
Prof Frederick Hickling, the senior medical officer at Bellevue in the 1970s and 1980s, led the shift away from the custodial approach to mental healthcare inherited from Britain. Photograph: Handout
The Jamaican model was introduced by the late Professor Frederick Hickling, who was the senior medical officer at Bellevue throughout the 1970s and 1980s – the highest psychiatric post in the country.
Hickling was determined to move the country away from the custodial treatment style inherited from Britain, whereby mentally ill patients were detained in hospitals against their will – as is still the case in many low and middle-income countries.
“Post independence we had limited financial resources and a population traumatised by colonialism and the legacy of slavery,” says Geoffrey Walcott from the Caribbean Institute of Mental Health and Substance Abuse, founded by Hickling. “We had to find novel ways to restructure our system.”
By allowing patients to receive healthcare without being committed to Bellevue, Hickling hoped to avoid the shame associated with mental illness while making treatment more accessible and cost-effective. Nearly half of Jamaicans live in rural areas, a costly journey away from Kingston’s Bellevue, while fewer than 10{08cd930984ace14b54ef017cfb82c397b10f0f7d5e03e6413ad93bb8e636217f} own a car.
Hickling also sought to minimise involuntary treatment.
Dr Geoffrey Walcott says: ‘If patients are part of the decision-making process and accept treatment, they are more likely to recover and remain well.’ Photograph: Mary Fowles/The Guardian
“What we found is that if patients are part of the decision-making process and accept treatment, they are more likely to recover and remain well over a long-term period,” says Walcott, a former student of Hickling. “The biggest cause of relapse, especially for patients with schizophrenia, is non-compliance with treatment. When a patient is onboard with their medication, the relapse rate can be cut from 50{08cd930984ace14b54ef017cfb82c397b10f0f7d5e03e6413ad93bb8e636217f} to 3{08cd930984ace14b54ef017cfb82c397b10f0f7d5e03e6413ad93bb8e636217f}.”
Walcott recalls attending to a mentally ill man, armed with a knife and a machete, who had been apprehended by the police. “We opted not to take him involuntarily to a hospital and, while keeping his machete and his knife, he accepted treatment,” Walcott says.
After three weeks of treatment the man was lucid enough to cooperate with Bellevue’s social work team. “The team was able to find his brother and within six months the man was reintegrated into his family while taking long-acting injectables to manage his condition. Today, deinstutionalisation is baked into our healthcare model.”
But while Jamaica has found innovative ways to deliver mental healthcare to its citizens, this has not meant the end of challenges for the island as resources remain scarce.
“I am grateful that my son is not wasting away in some hospital,” says Yvonne McKenzie, whose son Andrew, 39, has bipolar disorder. “But I don’t feel supported by the system. I feel alone.”
For McKenzie, the mental healthcare model which centres on family and community cooperation means that, in the face of limited resources, the responsibility for managing illness can disproportionately fall on women.
Yvonne McKenzie at her home in St Thomas, Surrey, Jamaica. Her 39-year-old son has bipolar disorder and is being treated by Dr Walcott. Photograph: Mary Fowles/The Guardian
“I have seen my son’s psychiatrist more times than I can count, but I don’t think Andrew’s dad has spoken to him once,” McKenzie says. “Andrew was diagnosed in his late teens. Since then, I have been journeying with that diagnosis single-handedly.
“What I fear the most”, she says, “is what will happen to him after I am gone.”
Inge Petersen, a professor of public mental health at University of KwaZulu-Natal, says: “To help patients live in the community families need to be offered support. Often in low and middle-income countries the money does not follow the patient after they are discharged from hospital.”
Finding a way to reintegrate long-term residents into the community, some of whom have lived at the hospital for more than 30 years, is now Bellevue’s priority.
“It’s not possible to rehome every single resident,” Govia says. “We are working to create a transitional adult care facility.”
However, the hospital relies on NGO cooperation. “We may have the best of intentions”, Govia says, “but we really need to get the buy-in from third-sector organisations to be able to realise them.”
“Countries can have wonderful policies,” says Petersen. “But what is really required is technical support for governments in low and middle-income countries to implement successful deinstitionalisation.”
Posters at Bellevue hospital remember musician Bob Marley, who died in 1981, and Prof Hickling, who died in 2020. Photograph: Mary Fowles/The Guardian
Petersen would like to see a pool of global funding dedicated to implementing efficient mental health policies, similar to the resources available for treatment of HIV.
Govia’s long-term hopes for Bellevue include a world-class neurocognitive psychiatric facility. She also hopes that the hospital will become an example of successful transformation.
“I would love it if, in the next 50 years, Bellevue would provide insight into how to transform effective long-term care,” she says. “In Jamaica, the resource constraints have led us to find creative and cross-sectoral solutions. Even if the fruits are not fully visible yet, the insight and experience Jamaican psychiatrists can provide are important.”
