Diversity in Psoriatic Disease Care: an interview with Judy Wallace

In December 2022, IFPA sat down with Judy Wallace to hear about her experience as a dermatology operational nurse caring for people living with psoraitic disease in South Africa.

1. What are your experiences with managing and treating people with psoriatic disease in your country?

As a dermatology operational nurse in charge of the 18 bedded ward for dermatology patients, I am responsible for adequate staffing of skilled nurses to attend to patients with skin conditions which include nursing people with psoriasis. I am hospital based and thus we receive calls from patients and families enquiring about their disease and asking for help in the diagnosing and treating psoriasis. They have often used Google to search for information and for centres near to where they reside. Patients get medical attention through self-referral, via the emergency room (ER), outpatient dermatology department, or through the primary care level via a referral App. Severe cases are admitted to hospital and given all treatment options usually commencing with topical applications.

Support is critical. Thus we try to link the person to our South African Psoriasis Association (SAPSA) WhatsApp group. I find that most patients need the multidisciplinary treatment approach because of the possibility of comorbidities. Patients requires support in this regard.

2. Based on your experience working in this field, how would you characterize how psoriasis cases manifest among individuals of various ethnicities/races?

Psoriasis affects all sexes, ages and races. Psoriasis runs in families and thus history taking is essential. Most patients attended at the government hospital are no-to-low income. There are some private paying patients. Patients on medical aids are seen at dermatologists’ private rooms. We currently do not know the numbers. A search using the ICD 10 codes would be needed to acquire these stats.

3. What do you believe to be the biggest difficulties/challenges facing psoriatic patients in your country - in this case South Africa?

Accessibility, care availability, cost, management, treatment, stigma, and discrimination are big challenges in our South African context. Patients ask one another for assistance on chat groups. At times they end up sharing treatments as they cannot afford to purchase out of pocket. It is often out of desperation that they acquire the applications in this way. Of course this is not advised as some treatments that work for one individual would not work for another and there may be complications.

Primary care should be improved to provide this essential service nearest to the patients’ residence. Currently only one centre provides such a service with a trained dermatology nurse. The four other centres proposed a few years back have not materialised, therefore there is very limited availability of specialist care in the Western Cape, and even less is other parts of the country. Patients can access primary care centres but there are not sufficient adequately trained dermatology nurses there to attend to their needs, thus hindering the care they ought to receive.

Some patients are referred to the phototherapy departments at government hospitals, such as our department where they can receive education on topical applications and nursing support. This includes instructions on how to use treatments. For example, how to prevent rebound of the condition such as with cortisone withdrawal adverse events and the general practical care to prevent infections through incorrect use of applications such as pot care.

Patients often speak about the expense they have to go through in needing to buy moisturisers and other treatments at pharmacies. This frequently leads to patients’ inability to maintain their condition and then they end up being admitted as an in-patient. Ablution facilities at home is another basic need, however it is most often not available to our patients.

Stigma remains a problem. Until education via all mediums becomes a norm, people will still be discriminated against because of the lack of knowledge and understanding within our society. We do not have relevant health promotion resources or any other form of educational medium for the public other than social media such as Facebook and Twitter where conflicting messaging is prevalent. Furthermore, the majority of people struggle with online access as data is expensive and smartphones are expensive too. There is a big need for school children to be made aware of different skin conditions and for support to be available to young teenagers who suffer from various conditions such as acne, eczema, and psoriasis. Children and adults would be more accepting once they have learned to treat all people as equal no matter the challenges.

4. Do you think these challenges you mentioned might be different in the global north, and if so, why?

I think it would be the same all over the world, though in some countries access to treatments are easier to obtain. We do not have universal health care in South Africa and thus people are not receiving equal health care. Government hospitals have to operate their services according to budget constraints. Private healthcare in South Africa has its own problems as well. Treatments such as biologics are not easily given to patients unless all avenues of treatments have been utilised. Very few medical aid companies are willing to offer financial support for biologics especially when requested by dermatologists.

5. In your respective healthcare system, do you think that health care providers (including nurses and doctors) have the necessary resources/capacity to provide satisfactory, equitable, and quality care to their patients?

South Africa’s government hospitals are overloaded with patient numbers. In dermatology clinics and wards, doctors and nurses are attending to various skin conditions. Psoriasis is one of the most seen alongside eczema. Unfortunately, in South Africa dermatology nursing is not recognised nor regarded as a nursing specialty although doctors who train as dermatologists are considered as specialist clinicians. Therefore, nurses are not drawn to this field of nursing as it lacks the salary income brought in by working in other specialty areas. Our wards therefore tend to be under-staffed or staffed with nurses who do not have the necessary expertise or interest.

6. Do you believe patients are well-informed about their circumstances and empowered to communicate the weight of their psoriasis?

Generally, patients are not well-informed, nor are many doctors, pharmacists or nurses. Many myths surround information on psoriasis. Communication for many patients is difficult, as well as access to treatment that is appropriate, available and affordable. The sharing of psoriatic disease experiences and knowledge with others in similar circumstances tends to comfort individuals. It eases their fear of the unknown, helps them feel accepted by others and supported.

Our SAPSA WhatsApp group has been particularly active in this regard over the past 8 years. We have observed how patients can be empowered when they are referred to the psoriasis support groups. They gain strength to become visible and develop the courage to communicate with others that are experiencing similar struggles such as the unavailability of biologics.

Covid has brought people together. We have realised that death can come quickly and unexpectedly. We have thus learned how to care better and share knowledge.

7. Which instructional tools, in your opinion, would best aid in educating healthcare professionals (HCPs) and patients about psoriasis considering the situation?

Healthcare professionals such as nurses must be trained in the field of dermatology and obtain a Diploma. The skills acquired are critical in the diagnosing and treatment of people with psoriatic disease. Many of the health risks which come with the condition can be prevented if caught early. Unskilled HCPs will cause more harm than good. Understanding psoriasis and the comorbidities can be taught through courses alongside hands-on clinical care to gain the appropriate skills. Currently, through the University of Cape Town’s Health Sciences Faculty, our department runs an online two month dermatology course targeted at registered medical and nursing professionals.

Nurses need training in particular skills and to be allocated to primary care centres where they can then educate patients on topical care with treatments such as dithranol, tar treatment, cortisone use and application, as well as assistance in the ablution facility. Education and guidance for patients and their loved ones who are their primary support is essential. We are hoping to develop educational HUBS where coffee table simple guides can be made available on treatment options at all primary care facilities and hospitals, as well as evidence-based internet links.

Simple HOW TO guides on the use of keratolytics, dithranol, tar and cortisone applications are much needed. Simple DOs and Don'ts guides on the uses of cortisone, pot care etc are also much needed.

It is the right of every human being to be treated equally by receiving the care they need without causing pain or discomfort. All healthcare professionals, as well as the public, need to be adequately informed to facilitate access to appropriate treatment.