50% of 179 waited more than a year for a treatment regime that made their eczema manageable.
Since our first report on severe eczema Seeing Red in 2017, the healthcare system has faced major challenges, none more severe than the COVID-19 pandemic, which forced clinicians to suspend face-to-face consultations and led to a backlog in the identification, diagnosis and treatment of patients. Of the healthcare professionals surveyed in this report alone, the majority said the pandemic has made it difficult to both identify and diagnose patients, and patients themselves have struggled with the lack of face-to-face appointments for skin conditions.
As we reset from the pandemic, the reconfiguration of the healthcare system from Clinical Commissioning Groups (CCG) to new Integrated Care Systems (ICS), provides an opportunity to not only recover services but to improve them. As part of this change, Primary Care Networks (PCNs) will become the centre of service delivery and assessing local population health. Therefore, it is critical PCNs take a leadership role in supporting patients with skin conditions, especially as the burden of presentations and management occurs in primary care.
This report aims to provide an insight into the lived experiences of patients with moderate-to-severe eczema and highlight the significant impact on day-to-day life. Crucially, it will present actionable healthcare solutions to address the issues faced by patients, reform the patient pathway, and improve lives.
30 out of 30 healthcare professionals felt there was not adequate mental health support provided for patients with eczema.
COVID-19 and eczema
The challenges faced by the NHS due to the COVID-19 pandemic are well known9 and for patients living with moderate-to-severe eczema, those challenges have been particularly acute, with specific issues identified in diagnosing and referring patients, as well as in access to services. While there is recognition that healthcare professionals delivering services have been doing their best in very difficult circumstances, the limitations of sustained interaction by phone have become apparent. One of the reasons for this may be the difficulty in assessing a very visual disease remotely. This hints at the limitations of digital consultation which may not be suitable as a long-term solution.
26/30 HCPs we surveyed said COVID-19 has made it moderately to extremely difficult to identify patients
Additionally, there have been difficulties faced during the pandemic, where some services (those deemed acute, or essential like cancer and emergency services) were prioritised above others. This has had a knock-on effect on eczema patients and the service that they have received, with just under half of patients surveyed saying that the pandemic has made it more difficult to access services and treatments. While it is testament to the efforts of the healthcare professionals that run moderate-to-severe eczema services, and their extraordinary efforts during the pandemic, that this number is not greater; a large proportion of people have faced disruption and difficulty in accessing the services upon which they rely.
Evidence shows there has been a significant impact upon both the delivery of eczema services, and the impact felt by individual service users. A particular difficulty with moderate-to-severe eczema is that as well as leaving service users feeling that their clinicians have struggled to assess their conditions via remote digital methods, the stress of using a service under COVID-19 restrictions could also have exacerbated some people’s eczema.
One third of HCPs indicated that it has been much harder to diagnose patients with moderate-to-severe ezema
COVID-19 has also resulted in other lesser examined consequences for people. The practice of frequent handwashing and using alcohol-based hand gels can cause problems such as dry hands and hand eczema.11 Moreover, recent studies have indicated that the pandemic has led to increased instances of skin irritation and disease, especially among health workers who are required to wear personal protective equipment.
Experience of care
History and childhood transition
Patients with moderate-to-severe eczema have been affected by the condition for many years and have had varied experiences of care as they transitioned into adult services. Of the patients surveyed, many found they received better support in childhood services, and that this was recognised by their own clinicians. Patients were often told in their childhood they would “grow out” of the condition and have not, and those who continued to receive long-term support are prescribed stronger treatments in adulthood.
Diagnosis is the initial stage for patients to access appropriate treatments and start to be able to manage their eczema effectively. However, we found that there is likely to be significant variation in time to diagnose moderate-to-severe eczema patients. Just over one in three (37%) patients surveyed were seen within a month of noticing their first symptoms, while one in five (20%) waited over one year for an eczema diagnosis.
Guidance and support for healthcare professionals
We found the majority (23 in 30) of healthcare professionals thought there was not a good awareness of how to manage and treat moderate-to-severe eczema amongst GPs, which could be one reason diagnosis of eczema patients can sometimes be poor. Indeed, they mentioned that there was variation in many areas related to the diagnosis of the disease, including knowledge of eczema and treatments, as well as degree of priority and follow-up support.
Of the 13 healthcare professionals who did not think they had clear guidance, 12 HCPs agreed they would benefit from clearer guidelines to help diagnose and treat patients with moderate-to-severe eczema. Healthcare professionals highlighted the importance of clear guidelines, noting that there is currently a lack of consensus at all stages – from naming the disease, through diagnosis to treatment. Clear guidelines were also deemed “essential” to support understanding of the disease and treatments to the patient.
For those who did not have an issue with guidelines, one healthcare professional had written guidance for their own department which had been effective and supported prescribing decisions, and another regularly managed eczema. This still indicates that clinicians either need experience in the area or require clearer, updated guidance.
Tools to identify severity of eczema
Only 13 out of 30 healthcare professionals surveyed currently use tools such as scoring systems to identify, diagnose and refer people with eczema; and even then, these are generally used in an inconsistent way. 25 out of 30 HCPs agreed the following elements should be included in the national scoring system:
• Total body surface affected
• Severity of dry skin and redness
• Pruritus (itch)
• Psychological impact as reported by the patient (e.g., loss of sleep, mental health impact)
Additional elements were also suggested such as impact on school or work, adequate access to treatments, triggers, skin pain, area affected, presence of chronic changes such as lichenification and prurigo, infections, and taking into consideration people with darker pigmentation i.e., terms such as “redness” are not beneficial.
A clearer and more consistent use of scoring systems and guidelines could help reduce consultation times, as we found that eczema consultations took up a significant amount of time for healthcare professionals, with the majority (21 in 30) lasting 15 minutes or longer.
Once people are diagnosed, those with moderate-to-severe eczema may need to be referred to specialist care. We found significant variation in waiting times for a specialist referral, with the average wait being over three months. The exact reasons for this variation in specialist referral are unknown, however healthcare professionals do trigger referrals for a multitude of reasons at their discretion. Beyond the main reasons identified in our survey, other reasons for referral specified included age and aesthetics, the need for secondary care or advanced therapy, parental request, or that a patient previously had PUVA and requested the same.
73% of 154 patients were referred to specialist care within one month to one year after their diagnosis
27% of 154 patients waited over a year for a referal to specialist care. Of those who waited at least one year for a referral, nearly two thirds (63%) ended up waiting over two years.
The amount of time patients wait for a referral can hinder their ability to appropriately manage their eczema, becoming a long-term issue for many which affects their quality of life. Patients had varied experiences accessing appropriate treatments. Some people also suffered from steroid withdrawal reactions, after being prescribed steroids for a long period of time, which are known to be associated with topical creams. Patients noted that they often managed their treatment at home, by themselves without input from clinicians, and this can sometimes have a financial burden on patients.
In addition to improving the scoring system itself, healthcare professionals were keen to see the overall pathway improve for patients. Parliamentarians have previously called for the creation of national clinical guidelines for the management of moderate-to-severe eczema in adults and adolescents. Ministers from the Department for Health and Social Care have confirmed that there is a commitment for NICE to develop a guideline for adult moderate-to-severe eczema, however no significant progress on this has been made since our first report,
Seeing Red, in 2017.
Current commissioning policy
None of the CCGs that did not already have a commissioning policy had plans to put one in place within the next 2 years. However, some CCGs tend to follow the NICE technology appraisals for eczema, and have created guidance on treatment prescription based on these, or have created their own internal triaging system. This shows there is a need for standardised guidance of care, as there seems to be reliance on the NICE technology appraisals which do not provide a holistic view of care across the patient pathway.
Only 3% of CCGs had an adult eczema commissioning policy in 2021.
Quality of life
Living with a long-term skin condition can take a toll on patients’ lives, and management of symptoms often takes up a significant portion of time. Notably, almost a quarter (23%) of the 92 patients who had to take time off work ended up missing more than 15 days of work because of their condition which indicates a severe impact.
The UK workforce already experiences a high level of sickness absences; in 2020 it was reported that 118.6 million workdays were lost, equating to 3.6 days lost per worker. Our data reflects that moderate-to-severe eczema patients experience higher than average levels of sick days compared to the average UK worker, revealing a potentially detrimental impact on finances and employability for this population of patients.
The psychological health impact on people with moderate-to-severe eczema is extensive, indicating that skin conditions have a far deeper reach into the social and psychological health of patients beyond just physical debilitation and time spent on disease management. Indeed, it has been found that depression, anxiety, and suicidal ideation are more common amongst people with moderate-to-severe eczema. These damaging social and psychological impacts of the condition need to be addressed and supported appropriately.
More than three quarters (78%) of 237 patients were affected by social or psychological health issues.
Evidently, the wide-ranging burden of moderate-to-severe eczema needs to be considered when diagnosing and treating patients, to provide a holistic care pathway that considers the social and psychological needs in addition to the physical. However, patients currently are unaware of the existence of patient support groups or of psychological support they could be referred to. There was also a clear consensus amongst healthcare professionals that psychological support for patients was poor.
Notably, the patients we surveyed were found to have a range of other allergies alongside their eczema diagnosis, which could indicate a common underlying trigger for these conditions.
In 90% of 264 patients, moderate-to-severe eczema was one of at least two coexisting conditions. A quarter of 264 patients had three or more additional allergies. The patients who suffered from co-existing allergies found that there is little joined up care across services to address all these issues efficiently and effectively due to the lack of knowledge by clinicians or simply a lack of communication across clinics.
We are calling for the following recommendations, summarised from the report, to be implemented to improve the patient pathway, access to care, and ultimately the lives of those living with eczema.
Develop standardised NICE adult & adolescent guidelines
NICE should prioritise development of adult and adolescent guidelines for atopic eczema, to address unwarranted variation which all ICS’ / PCNs should use to reduce the ‘postcode lottery’. This should include a policy around steroid use for eczema to address overuse and a national scoring system for atopic eczema. It should be circulated amongst healthcare professionals to ensure consistency of use.
Ensure all ICS’ have an eczema commissioning policy
Each ICS / PCN should have a commissioning policy for dermatology to ensure there is a standardised pathway and access to care for people with eczema, irrespective of where they live.
Improve psychological support and access
Each ICS / PCN needs to ensure psycho-dermatological support is commissioned as part of the patient pathway, to improve access to psychological support. Education and training of healthcare professionals in primary care on the availability and range of support services available, including patient advisory groups, should be improved so that they can signpost patients to support.
Prioritise and integrate eczema across settings
Each ICS / PCN should ensure the patient pathway is integrated across different settings in which eczema patients present. This includes:
- Improving the transition of childhood to adult care settings
- Require a dedicated dermatology lead who acts as the key liaison with secondary and specialist care dermatology departments
- Greater collaboration between dermatology, allergy, and respiratory settings to ensure an integrated and personalised approach to patient care.
Ensure in person appointments are maintained for skin conditions
The option for in-person consultations should be returned to ensure skin conditions can be appropriately diagnosed and managed. The NHS Long Term plan highlighted a drive for some specialist referrals for dermatology to take place with pictures and questionaries,13 this should be part of the shared decision-making between patients and their clinical teams.