From National Guidance to Local Action

AbbVie has published a new report setting out the current state of play in access to care, services and treatment for people with long term skin conditions, comparing the optimum treatment pathway as set out in national guidance to the current reality faced by patients. It sets out a series of actions across the pathway which appropriate institutions may consider to help address barriers to improved care and treatment for patients whilst delivering cost savings to the NHS by reducing the burden of these conditions

Improving Access to Dermatology Services

This is a non-promotional report developed by Evoke Incisive Health and commissioned and funded by AbbVie. See footnotes and appendix for full references. AbbVie and Evoke Incisive Health do not make recommendations as to individual service management. Please refer to the relevant full NHS/NICE published guidance on service management and referral pathways. This material is intended for relevant decision makers with an interest in / responsibility for dermatological services in the UK.

FROM NATIONAL GUIDANCE TO LOCAL ACTION

Job number: UK-IMM-230331 | Date of Preparation: December 2023

Executive summary

Skin conditions are one of the major causes of ill-health and disability in the UK and have been the second leading cause of morbidity since 1990. 1 Two of the most common conditions are atopic dermatitis, i the most common form of eczema, affecting 5-10% of all adults, 2 and psoriasis, which affects around 1.1 million people in the UK. 3 Demand for dermatology services is significant. Skin problems account for around 13 million GP consultations and over 700,000 new referrals to secondary care each year. 4 Skin problems are the most common new presentation in primary care, representing around one in four new patient appointments. 5 Since the pandemic, challenges across the care and treatment pathway have increased due to:

Increased demand There were 900,000 fewer appointments due to cancelled follow ups and system disruption in the first 18 months of the pandemic. 6

Workforce shortages According to the British Association of Dermatologist’s (BAD) Staffing and Facilities Guidance for Dermatology Services, as of December 2022, there was a shortfall of 250 Whole Time Equivalent (WTE) Dermatology Consultants in the UK. 7 They also say more investment is needed to help train the number of dermatology nurses required. 8

Delays accessing treatment Around 434,000 patients are on the 18-week waiting list for treatment, nearly double the amount on the list at the same time before the pandemic (August 2019). 9,10

An optimal treatment pathway for patients with eczema and psoriasis in England is set out in national guidance and should see patients waiting no longer than three months for referral and diagnosis in secondary care, and a 10% improvement in quality-of-life score within another three months. 11 It also includes full access to all NICE approved treatments for all patients, regardless of geographic location, in line with the NHS Constitution. 12

i For the basis of public recognition atopic dermatitis will be referred to as atopic eczema within this report

FROM NATIONAL GUIDANCE TO LOCAL ACTION

However, in reality, due to the burdens noted above, the care pathway for many patients is fragmented, with barriers across different parts of the pathway. They include: • Almost one in ten people with severe eczema attending more than ten primary care appointments before being diagnosed. 4 • Around a third of severe eczema patients having to wait four to seven months before being seen in secondary care after referral. 4 • 56% of trusts needing regional approval before using NICE approved treatments. 13 • 98% of skin disease patients reporting that their condition affects their emotional and psychological wellbeing, yet only 18% receiving some form of psychological support. 14 • 67% of people with very active psoriasis reporting that their condition affects their working life, while 43% feel their psoriasis has limited their income and/or future earnings. 15 The NHS has recently made a series of welcome announcements on opportunities to speed up the treatment pathway for patients trying to access dermatology services, including NHS England’s Referral Optimisation Guidance for People with Skin Conditions 5 and the Getting it Right First Time (GIRFT) review into dermatology services. 13 However, there are challenges to the consistent implementation of guidance across the country due to lack of capacity; variation in approach; incompatible IT systems, particularly between primary and secondary care; and a lack of equipment and funding. 16 To support guidance adoption, a financial and resource case needs to be made to demonstrate the longer-term savings that could be achieved from implementing these considerations. An initial analysis of limited available data shows that just reducing the number of pre-referral appointments could save £1,779,660 in psoriasis and £3,948,019 in atopic eczema [see Part 3 for calculation methodology] . In practice, the total savings at the delay to referral stage, and throughout the rest of the pathway, could be much higher, particularly when considering the wider socio-economic impacts of these conditions. Expanding these initial calculations to make a comprehensive financial and resource case for the wider adoption of these guidance changes is therefore pivotal.

Other actions for consideration which may help remove persistent barriers to improved care and treatment for patients with inflammatory skin conditions are:

1 Core action to consider: Ensuring systematic national data on diagnosis, referral to specialist care and access to advanced treatment is collected. (NHS England)

2 Core action to consider: Setting a target of full implementation of NHS England guidance on referral optimisation for people with skin conditions and annually benchmarking trust uptake. (NHS England) 3 Core action to consider: Reporting on the financial costs to the NHS (direct, indirect and resource costs) created by barriers identified in this report. (National Audit Office)

FROM NATIONAL GUIDANCE TO LOCAL ACTION

4 Mandating NHS trusts to monitor and track data on outpatient appointments for adult patients with diagnosed or suspected atopic eczema and psoriasis. (NHS England)

5 Formally recognising the Eczema Area and Severity Index (EASI) scoring system in eczema and Psoriasis Area and Severity Index (PASI) scoring system in psoriasis, so that there are nationally endorsed tools for measuring disease severity. (NICE) 6 Removing all barriers to NICE-approved treatments and ensuring consistent implementation of national NICE guidance where available, to end regional variation in access. (Integrated Care Systems) 7 Ensuring Integrated Care Systems (ICSs) have a robust assessment of the numbers and needs of patients living with inflammatory skin conditions in their area. (NHS England) 8 Ensuring all GIRFT recommendations supporting adherence to NICE guidance are delivered, including requiring trusts to submit data that allows for regional benchmarking of treatment use to support identification of unwarranted regional variation. (Integrated Care Systems) 9 Ensuring the NICE shared decision-making standards framework is utilised across dermatology services. (Integrated Care Systems) 10 Developing and publishing national guidelines and accompanying quality standards for the management of atopic eczema in adults and adolescents (NICE) . Integrated Care Systems should then be required to establish associated commissioning policies. (Integrated Care Systems) 11 Increasing access to dermatology training and education for undergraduate curriculums and for existing GPs. NHS England’s new iterative approach to workforce planning should consider how GP vocational training in dermatology can be expanded. (NHS England) 12 In their five-year joint forward workforce plans, Integrated Care Systems should identify how dermatology multidisciplinary team working can implement new guidance and tackle identified challenges. (Integrated Care Systems)

13 Ensuring the Major Conditions Strategy covers services with a high demand on NHS resources, including dermatology, to avoid a two-tier system of prioritised conditions emerging (Department of Health and Social Care). Similarly, all Integrated Care Systems having a strategic aim to improve overall dermatology care.

FROM NATIONAL GUIDANCE TO LOCAL ACTION

Introduction

Skin conditions are one of the major causes of ill-health and disability in the UK and have been the second leading cause of morbidity since 1990. 1 Demand for dermatology services is significant. Skin problems account for around 13 million GP consultations and over 700,000 new referrals to secondary care each year. 4 Skin problems are the most common new presentation in primary care, representing around one in four new patient appointments. 5 However, a range of challenges currently exist across the care and treatment pathway that affect access to care for patients with inflammatory skin conditions. These include:

Increased demand Analysis completed by Carnal Farrar suggested there were over 900,000 fewer dermatology appointments due to cancelled follow ups and system disruption in the first 18 months of the COVID-19 pandemic, which is likely to have increased demand as individuals may not have been supported to manage their care effectively. 6

Significant workforce shortages NHS England’s latest workforce statistics show that there were 669 WTE consultant dermatologists working in England in June 2023. 17 According to the British Association of Dermatologist’s Staffing and Facilities Guidance for Dermatology Services, as of December 2022, there was a shortfall of 250 WTE Consultants in the UK. 7 Based on a study completed in the same year, the UK has the fewest number of consultant dermatologists per patient of all ten countries measured as part of the Global Patient Initiative to Improve Eczema Care. 18 The BAD also say the issue is not limited to consultants and more investment is needed to help train enough dermatology nurses, who are essential members of the multidisciplinary team – providing day care facilities for those with severe disease and support for families among many other roles. 8 This staffing situation has been stretched further in 2023 through persistent industrial action, with elective care planning disrupted during these periods.

Delays in referral to specialist care Many patients are facing delays in accessing specialist secondary care services where their condition could be optimally managed. Research has found that almost one in ten patients with severe eczema had to attend more than ten primary care appointments before being diagnosed. 4

FROM NATIONAL GUIDANCE TO LOCAL ACTION

Long waits in accessing treatment Even once individuals are diagnosed, many of those who require specialist care face considerable waiting times.

As of August 2023, over 434,000 patients are on the 18-week waiting list for treatment. This is almost double the 237,000 on the list in August 2019, before the COVID-19 pandemic. 9,10

In spite of these challenges, opportunities do exist to speed up the treatment pathway for patients with inflammatory skin conditions, including:

• The 2023 NHS England Long-Term Workforce Plan. 19 The Plan sets out a series of commitments to improve the training, retention and recruitment of staff to address shortfalls in capacity, including doubling the number of medical school places and increasing GP specialty training places by 50% by 2031/32. • NHS England’s Outpatient Recovery and Transformation Programme guidance documents. In particular, the Referral Optimisation Guidance for People with Skin Conditions 5 is designed to ensure local systems are able to embed personalised care, strengthen primary care management and streamline collaboration between generalists and specialists. Similarly, the virtual urgent skin cancer pathway is designed to speed up referrals and shorten waiting times, creating more resource capacity for non-cancer dermatological conditions. 20 • Implementing the recommendations of the Getting it Right First Time (GIRFT) review into dermatology services. 13 These expert led recommendations, if implemented, have the potential to improve care across the pathway – from diagnosis to referral and access to treatment. The Long-Term Workforce Plan, GIRFT report and NHS England’s transformation initiatives include changes that can be taken in the short-term to address challenges across the care pathway. However, local capacity and resource challenges are inhibiting the consistent adoption of these initiatives across the country, 16 which may be symptomatic of a broader concern that exists (see box 1) about the ability to translate well constructed and tested programmes of change from the national to trust level to make the impact on services that is required. “The Department has allocated £14 billion to NHSE from 2022–23 to 2024–25 specifically to recover elective and cancer care. Without timely evaluation of its programmes, including surgical hubs and clinical diagnostic centres, there is a risk that the future allocation of resources will not be informed by reality on the ground.” Managing NHS backlogs and waiting times in England, Public Accounts Committee, Thirty-Eighth Report of Session 2022–23, March 2023 21 BOX 1

FROM NATIONAL GUIDANCE TO LOCAL ACTION

Due to the limited resources in primary and secondary care to implement these potentially transformative changes, patients may continue to struggle to secure a diagnosis in primary care, and may continue to face delays in access to specialist care. Once treatment is initiated, local restrictions and other barriers to treatments, in contradiction of NICE guidance, mean patients can be cycled through the same treatment, often for years, and unable to access a potentially more effective treatment. This paper sets out a perspective on the optimal care management pathway for patients with inflammatory skin conditions, focusing specifically on eczema and psoriasis, and compares this to how patients are actually accessing care, services, and treatment in practice. It also begins to explore what financial cost savings to the NHS could be made by speeding up the management of this pathway in line with national guidance. It is split into four parts:

Part 1 maps out the optimal care management pathway for eczema and psoriasis patients, as set out in national guidance.

Part 2 explores challenges and barriers across the system, which results in a fragmented pathway with regional variation in access to care and treatment.

Part 3 assesses an initial element of potential costs savings to the NHS that may be created if guidance is implemented to overcome these challenges. These are based on delays in referral to specialist care and have been estimated from an analysis of the available data.

Part 4 sets out a series of actions for consideration

that would support the implementation of the new national guidance in the coming years.

Patient Quotes Please note patient quotes in this report come from interviews with dermatology patients, one conducted by AbbVie and others provided by National Eczema Society, all with consent. They are included in this report to illustrate examples of patients’ experiences in navigating access to care and treatment – bringing to life the challenges that are described in Part 2. Extracts are highlighted in the green boxes in the report. 22 Devolved Nations Please note references to national guidance and evidence in this report refer mostly to England, although there may be some cross over in evidence cited. Many of the restrictions and themes cited within the report are applicable across devolved nations but additional devolved specific evidence will be required to make them directly relevant.

FROM NATIONAL GUIDANCE TO LOCAL ACTION

Part 1 Mapping the optimal care management pathway

Section Takeaways • An optimal management pathway for patients with eczema and psoriasis is set out in national guidance from NHS England and NICE. • This includes patients waiting no longer than three months for referral and diagnosis in secondary care and a 10% improvement in quality-of-life score within another three months. 11 • In line with the NHS Constitution, full access to all NICE approved treatments should be available to all patients regardless of geographic location. 12

Ongoing care and support

Primary Care Management Around 75% of all NHS consultations for skin problems take place in GP 13

Secondary Care Management Patients receive correct diagnosis within three months of referral 11

Access to Treatment Patients see 10% improvement in dermatology disease related

Regular Review and Follow up e.g. 4 weeks after starting new topical treatment (in psoriasis) 23

quality of life score within three months of referral 11

Patients offered access to effective treatments in line with NICE guidance 12

FROM NATIONAL GUIDANCE TO LOCAL ACTION

Secondary care assessment In order to provide an accurate secondary diagnosis and understand the most appropriate treatment option, the severity of the disease should be scored. A range of measures are used in eczema and psoriasis – the Eczema Area and Severity Index (EASI) and the Psoriasis Area and Severity Index (PASI) respectively. 25,26 The Dermatology Life Quality Index (DLQI) can also be used to measure the health-related quality of life of adult patients suffering from a skin disease. 27 Patients diagnosed with severe or complex psoriasis or eczema should then expect information to be given within three months of the first episode predicting the likely course of disease over the first year, to receive high quality and proactive treatment and care, and to see a 10% improvement in their dermatology disease-related quality of life score within three months of referral. 11 Access to treatment Once a patient is diagnosed with an inflammatory skin condition, swift access to follow up care, including optimal treatment, is key to reducing the severity of symptoms and the accompanying burden of the condition – both on individuals and the NHS. People with long-term skin conditions require maintenance treatment, in particular emollients, to reduce the likelihood of a flare-up in disease activity. In the case of eczema, NICE recommends a stepped approach to the treatment of the condition, with a treatment stepped up or down depending on the severity of the condition. 28 Treatment of a flare-up will often require temporarily increasing the intensity of treatment. Patients with severe or widespread atopic eczema that has not responded to existing treatments may require further treatment escalation, including NICE approved biologics and advanced therapies. Once initiated, the initial patient response should be assessed, and thereafter regularly during therapy. 29 Many local health systems in England have specific pathways in place relating to the use of these treatments that can be consistently applied by healthcare professionals in their area, to ensure adherence to NICE guidance. Primary Care Management The first point of contact for patients with eczema and psoriasis symptoms is their GPs; approximately 75% of all NHS consultations for skin problems take place in GP surgeries. 13 Here an initial diagnosis based on symptoms takes place. Early diagnosis and appropriate treatment of skin conditions such as eczema and psoriasis is critical to reducing the likelihood of an individual going on to develop associated conditions as well as other complications and comorbidities. 24 Given the significant socio-economic and psychological impact of severe disease on affected individuals, early diagnosis is key to enabling access to support services that can help patients to effectively manage their condition, as is reliable and consistent information and a clear care plan. Whilst inflammatory skin conditions are predominantly managed in primary care, for patients with severe psoriasis or eczema referral to secondary care may be required to provide optimum care and monitoring. For patients that need specialist support, NHS England’s objective is to ensure 90% of patients and referrers have a correct diagnosis within three months of referral. 11 NHS England’s referral optimisation guidance advocates the use of pre-referral specialist advice, such as advice and guidance through the NHS e-Referral service, followed by specialist triage, as the primary referral pathway for access to specialist dermatology services. 5 This is designed to improve the interface between primary, intermediate and secondary care for people with skin conditions, facilitating a clinical dialogue prior to a referral being considered. Where it is advised that a referral is required, the specialist can then direct the advice request to the most appropriate clinician, clinic and/or diagnostic pathway.

FROM NATIONAL GUIDANCE TO LOCAL ACTION

Review and follow up In 2022, NHS England issued guidance to local systems on implementing patient initiated follow-up (PIFU), with the aim of empowering patients to take control of their care, and ensuring they are able to see a specialist sooner than planned, where necessary. 30 For patients with eczema or psoriasis, PIFU should enable them to act on a flare-up in their condition and book a timely appointment with a specialist. 31 When implemented locally, it should support patients to self-manage their condition effectively, with the knowledge they can access specialist care where and when they need it, either as an alternative to or in combination with regular review appointments. Remote consultations are also encouraged when monitoring patients with more long-term, well-controlled conditions that require routine treatment monitoring or follow-up, or as a ‘stop gap’ when a conditions flares. 32 Throughout this process, NHS England recommends that people living with long-term skin conditions should be given the knowledge, skills, confidence and support to increasingly manage their own care and live more independently. 5 NICE has shared decision-making guidelines to support this joint process in which a healthcare professional works together with a person to reach a decision about care. 33 After receiving a diagnosis, patients may find it helpful to seek support from patient support groups like the National Eczema Society, Eczema Outreach Support, and Psoriasis Association. This can include access to structured education programs to help patients better understand their condition and how to manage it, and online resources and patient-facing apps that can aid in self-monitoring and emotional/psychological self-care. 5

FROM NATIONAL GUIDANCE TO LOCAL ACTION

Part 2 Mapping challenges in the pathway

Section Takeaways • The care pathway for many patients with eczema and psoriasis is fragmented – with barriers across different parts of the system preventing access to care in line with national guidance. • Almost one in ten people with severe eczema attend more than ten primary care appointments before being diagnosed. • According to patient surveys, around a third of patients with severe eczema have to wait four to seven months before being seen in secondary care after referral. • 56% of trusts waited for Clinical Commissioning Group (CCG) approval before using NICE approved treatments. • 98% of skin disease patients report that their condition affects their emotional and psychological wellbeing, yet only 18% have received some form of psychological support. • 67% of people with very active psoriasis surveyed, reporting that their condition affects their working life, while 43% of feel their psoriasis had limited their income and/or future earnings.

Mapping the current state of play

Restrictions in access to support services

Review and follow up

Local restrictions in access to NICE

Primary care management

Secondary care assessment

Access to treatment

Referral delays to

accessing specialist dermatology services

approved treatment services

Delays to initial diagnosis, exacerbated by limited GP training

Patients remain on same

Technology barriers and digital poverty preventing advantages of PIFU being maximised

treatment option, in

contradiction of NICE guidance

Patients offered access to effective treatments in line with NICE guidance

FROM NATIONAL GUIDANCE TO LOCAL ACTION

“To go through school, not seeing a specialist, not having any specialist medication and just not knowing what’s wrong with you but your GP won’t refer you – it was really hard in my social life, on my confidence and it’s affected me.” Alice

Delays in initial diagnosis One of the barriers to receiving a swift diagnosis and referral to specialist care is limited awareness of eczema and psoriasis in primary care. GIRFT states that GPs will often receive only one or two weeks training in dermatology throughout five years of medical school; this means that GPs, as well as nurses and allied health professionals, may work with limited specialist knowledge when diagnosing eczema or psoriasis and refer patients onto specialist care. 13 A recent report involving engagement with healthcare professionals found that insufficient training among GPs has caused inaccurate assessments of disease severity and delays in referring patients to secondary care. 2 One patient survey has found that: • Almost half of patients were required to see their GP or nurse between two to four times before receiving an eczema diagnosis. • Almost one in ten people with severe eczema attend more than ten primary care appointments before being diagnosed. 4 Another study said that between 25% to 44% of psoriasis patients have moderate to severe disease and would likely benefit from access to specialist care and treatment. However, the same study found only 18% of patients were referred, suggesting patients could be experiencing barriers in primary care and failing to access treatment that may limit their disease progression. 34 Psychological and financial burdens are other likely impacts on a patient when experiencing delays to secondary referral. There are also specific impacts on children including under-achieving at school, strain on relationships with peers and their families all contributing to lowering self-esteem and increased isolation. 35

“I repeatedly went back to the GP with severe symptoms, but was continually prescribed topical ointments and creams, personally costing a significant amount of money.” Alice

“I feel like GPs can only do so much and when I went there, the GP once said I’m so sorry, but I just can’t help you. I don’t have enough expertise in this department.” Chloe

Given the varied nature of the symptoms of inflammatory skin conditions, and the implications for treatment, identifying the severity of the disease is essential. The resources and educational materials available to healthcare professionals should be strengthened in primary care so that they can appropriately manage patients with long-term inflammatory skin conditions and refer them onwards where appropriate. This includes specific materials for the management of children and adolescents who can face specific societal pressures during their formative years. Community pharmacists, for example, can be the first point of contact for some people and should be aware of the ‘red flags’ that indicate the need for a referral. Collaborative working between dermatologists and pharmacists is supported by British Association of Dermatologists and the Royal Pharmaceutical Society, 36 and, GIRFT has recommended that undergraduate dermatology training for pharmacists is improved so that community pharmacists are able to manage common skin conditions in line with current evidence-based dermatology national guidelines. 13

FROM NATIONAL GUIDANCE TO LOCAL ACTION

“In terms of medical professionals I feel like it can be really hit and miss. I always felt like I was being rushed through the door a little …. like I was a bit of an inconvenience, I didn’t feel as though some of the appointments were constructive for me. It was a case of try this and off you go.” Emma

However, even in secondary care there is no nationally recognised assessment system for disease severity in the UK. Whist various scoring systems are used across the country, such as DLQI, EASI and PASI, in the case of atopic eczema, EASI is not well-known or used across all clinical practice, despite being a widely accepted and validated tool used routinely in relevant research studies. 4 Delays in accessing specialist care In spite of the importance of early diagnosis and referral for patients with inflammatory skin conditions, there are around 434,000 patients currently on the 18-week waiting list, almost double the number waiting pre-pandemic. 9,10 These statistics are supported by patient experience surveys: • One study of eczema patients showed 35% of adult respondents (42% for adults with moderate, severe or very severe eczema) said on the last occasion they were referred to a dermatologist, they had to wait more than three months for an appointment. 37 14% of adults waited more than six months and 5% of adults waited more than a year. 37 • Another survey found that around 30% of respondents with severe eczema had to wait four to seven months before being seen in secondary care after referral. 4 This situation is recognised by NHS England’s referral optimisation guidance, which highlights how patients with long-term skin conditions can find outpatient referral systems and processes inflexible and ineffective, with an inequity of access to care created for people with inflammatory skin conditions despite these diseases having a significant impact on their quality of life. 5 However, it has been suggested that many NHS trusts in England do not monitor or track data on outpatient appointments for adult patients with diagnosed or suspected eczema, and that for those that do, data is not collected in a way that can be broken down by individual skin condition. 4 This makes it difficult to assess the time patients have to wait to access care in different areas of the country, and one study found that only 14% of CCGs know the number of people with eczema in their area. 4 Workforce shortages have exacerbated these pressures. NHSE’s GIRFT report found that workforce shortages across the country were responsible for long waiting times for people with skin diseases, because the limited resources available are prioritised to meet cancer review and treatment targets. 13 This situation has been exacerbated by recent industrial action. A report in September 2023 in the BMJ suggested that as many as one million hospital appointments had been postponed in England due to strike action. 38 While this number spans all services, the disruption to elective care services is likely to be contributing to the rising waiting lists in dermatology noted above. Restrictions in treatment access Once an inflammatory skin condition patient has been seen by a specialist they may still find it difficult to access the optimal treatment for their condition. Many factors influence whether a patient is able to access a certain treatment, such as whether dermatology units have the dedicated personnel or services in place for the prescription and administration of a specialist treatment, or if they have a local documented treatment pathway in place that restricts access. 35

FROM NATIONAL GUIDANCE TO LOCAL ACTION

Most patients with long-term inflammatory skin problems, including eczema and psoriasis, have mild to moderate disease and are able to rely on topical treatments to manage their condition. Low adherence to topical treatments is an ongoing concern of NHS England, who are focused on improving the use of core treatments for people with long-term skin conditions, seen as an important part of enabling self-care and improving health outcomes. 5 In relation to more severe disease, GIRFT has found wide variation between trusts in the uptake of biologics used to treat these conditions. In collaboration with NICE, NHS England asked dermatology units for the reasons behind this, and found much depended on how CCGs interpreted NICE guidance. 13 56% of trusts said that they have to wait for CCG approval before prescribing NICE approved drugs, whilst 12% of trusts said CCGs had told them they could not prescribe certain NICE approved biologics for psoriasis. 13 There are some cases where commissioners prioritise cost as a key driver for treatment decisions with some requesting that the least expensive treatment be chosen. 39 This could be seen as in contradiction to GIRFT, which recommends ‘patients have equitable access to appropriate therapies’ . 13 This approach may also risk losing the cost savings that could be achieved cumulatively over a number of years should sustained disease control result from a faster progression to an optimal treatment. This situation seems to resonate with patient experience, with a recent survey by the National Eczema Society finding that 28% of adults with moderate, severe or very severe eczema face difficulty obtaining the treatment they need to manage their condition. 37 These findings highlight the extent of challenges in access to treatment for those living with atopic eczema and psoriasis, potentially resulting in poorer patient outcomes and undue suffering. As treatments evolve there may also be a need to ensure the workforce is upskilled to feel confident to administer them. Ensuring national guidelines and quality standards are in place for the management of severe eczema in adults would also help, as guidelines are currently only available for children under 12. 4 This could again assist local decision-making, as according to a 2017 freedom of information request sent to CCGs and NHS trusts in England, only 3% of CCGs had a commissioning policy on atopic eczema. 4

BOX 2

Local restrictions in access to advanced treatments mean that many patients spend years cycling through ineffective treatments before being prescribed the most appropriate treatment, and specialists at Salford Royal NHS Foundation Trust have noted that people with severe psoriasis can often wait ten years before they are prescribed a systemic drug and 12 to 14 years before they are prescribed a biologic. 3

There is also a significant variation in access to psychological support services across the country. In a survey conducted to support the All-Party Parliamentary Group on Skin’s 2020 Mental Health and Skin Report, 98% of skin disease patients reported that their condition affects their emotional and psychological wellbeing, yet only 18% have received some form of psychological support. 14 GIRFT found that workforce shortages were a key contributing factor behind the variation in access to such services, with only 11 dermatologists running psychodermatology clinics in nine trusts. 13 This variation, alongside delays in receiving a diagnosis and accessing treatment, is likely to have a detrimental impact on the quality of life of those suffering from inflammatory skin conditions. Technology barriers and digital poverty impacting follow-up ambitions Reducing outpatient follow-up appointments by 25% against the 2019/20 baseline by March 2023 has been a key NHS England target since the pandemic. 40 PIFU is seen as an important means of delivering that target and NHS England had an initial ambition of moving 5% of outpatient attendances to this pathway by March 2023. 40

FROM NATIONAL GUIDANCE TO LOCAL ACTION

However, despite the NHS’s drive to move towards PIFU, many patients still face challenges in accessing a specialist due to workforce shortages. Even patients who can access a specialist may lack the knowledge required to then self-manage their condition. 41 One report based on patient engagement found eczema patients felt frustration both on waiting times to get a referral as well as the wait to see a specialist dermatologist after being referred. 4 There is also the issue of digital poverty that restricts patients and NHS services getting the best out of PIFU as patients are unable to engage digitally or initiate follow-up because of a lack of knowledge or understanding of when to call their clinical team or not feeling confident to reach out. Language barriers and digital capability are other concerns and specific considerations have been suggested for adoption of teledermatology within ethnic minority communities. 42 Ofcom data shows that 1.5 million people are “offline” and many of these include disabled people, older people, and households with low incomes. 43 The geographical divide is also significant, with rural households seven times more likely to lack acceptable internet access compared to urban households. 42 Beyond the pathway – wider patient impact The long waits people with inflammatory skin conditions face receiving a diagnosis, accessing specialist and follow-up care, and the most appropriate treatment, impacts patients beyond their inflammatory skin condition itself. It can lead to a deterioration in quality of life among many patients and worsening emotional health: • One study, from a small sample size of 35, found 97% of respondents with psoriasis and PsA are affected emotionally, with 83% stating it affects their family life. 24 • Another study of patients with severe eczema found that over 70% reported feeling depressed as a result of their condition. 46% of respondents to the same survey had taken days off of work in the previous year due to their eczema. 4 • In a separate survey of eczema patients, 66% of adults said they were lonely and socially isolated because of their eczema, and nine in ten adults and three quarters of parents of a child with eczema say the condition significantly reduces their quality of life. 37 “It got to the point I was losing a lot of weight because I just couldn’t cope with it. I couldn’t sleep. I couldn’t eat. It was painful to do anything and I didn’t know the support that was out there because no one told me.” Alice “Throughout my adulthood I have tried to access different forms of mental health support, usually when my skin is bad because that often triggers the mental health or vice versa but… it felt like every door was being closed in my face, I couldn’t access anything on the NHS, it was just, you’re not a bad enough case, or we haven’t got the funding.” Hannah Challenges in access to high-quality care and management support can also have broader implications for those affected. A study published by the Work Foundation analysed the employment and wider economic costs of psoriasis, which can be affected by symptoms and co-morbidities such as: restrictions in movement that may result from psoriatic arthritis, anxiety from visible psoriasis, and itching and societal barriers that can prevent employment – such as through condition linked discrimination. Its survey found that 67% with very active psoriasis felt it impacted their working life, while 43% said had it limited their income and/or future earnings, with patients with severe psoriasis potentially losing up to 26 working days a year. 15

“When it’s at its worst I’ve had I had to miss work a few times. It’s because my skin was so bad, I was operating on two hours of sleep and that built up over a week and I was like, I just can’t function.” Jack

FROM NATIONAL GUIDANCE TO LOCAL ACTION

Part 3 Assessing costs to the system

Section Takeaways • The guidance documents from NHS England’s Outpatient Recovery and Transformation Programme have a real opportunity to make an impact on the barriers identified in Part 2. • However, guidance is not being implemented consistently across the country due to lack of capacity; variation in approach; incompatible IT systems; and a lack of equipment and funding. • To support guidance adoption, a financial and resource case needs to be made to demonstrate the longer-term savings that could be achieved. • An initial analysis of limited available data shows that just reducing the number of pre-referral appointments could save £1,779,660 in psoriasis and £3,948,019 in atopic eczema. • In practice, the total savings at the delay to referral stage and throughout the rest of the pathway could be much higher, particularly when considering the wider socio-economic impacts. Many of the barriers in accessing care, services and treatment for patients with inflammatory skin conditions set out in Part 2 are long standing and were exacerbated by the pandemic. However, since then a series of welcome national initiatives (outlined in the introduction) have been published with the aim of improving patient experience in line with the optimum pathway set out in Part 1. Whilst the delivery of the Long-Term Workforce Plan will take time to implement, the GIRFT report recommendations and the guidance documents from NHS England’s Outpatient Recovery and Transformation Programme are implementable in the shorter-term and have a real opportunity to make an impact on these barriers. One assessment of the potential impact of the urgent virtual skin cancer pathway concluded that if this pathway alone was fully adopted across the system it could save as many as 48,000 hours of specialist time that could be locally reallocated to caring for other dermatology patients. 6 It calculated that this time could be the equivalent to almost 15% of the unfilled WTE dermatology consultant posts as identified in the GIRFT report. 13 However, there is concern that this and similar elective recovery aspirations – as noted by the Public Accounts Committee above in Box 1 – are not being implemented consistently across the country due to lack of capacity and adequate training; variation in approach across the country; incompatible IT systems; lack of equipment and funding; low clinical buy-in and low patient understanding and interaction. 16 To help the service achieve the changes needed to overcome the barriers noted in Part 2, a financial and resource case must be made to demonstrate the longer-term savings that could be realised.

FROM NATIONAL GUIDANCE TO LOCAL ACTION

This section seeks to begin this process by examining the first piece of the barrier jigsaw identified – costs of delays to referral to specialist care for atopic eczema and psoriasis patients. It does this by estimating the implications to the NHS of patients being cycled through avoidable primary care appointments prior to diagnosis, and appointments that take place between diagnosis and referral to specialist care. One of the challenges in measuring the impact of inefficient pathways is the lack of data collection on diagnosis and referral rates in England for patients with long-term skin conditions. Data on psoriasis treatment patterns in primary care, particularly for patients who are referred to specialist care, is lacking. 34 In atopic eczema, research has found that most NHS trusts in England do not monitor or track data on outpatient appointments for adult patients with diagnosed or suspected eczema. Whilst some trusts do collect outpatient appointment data for skin conditions, it is not collected in a way that can be broken down further by individual skin condition. 4 A central consideration made in Part 4 of this report is therefore a more systematic collection of national data on diagnosis, referral to specialist care and access to treatment.

BOX 3

The calculations set out below are based on national data on the unit costs of GP care and informed by inferences made from the following reports: • A 2013 academic study on treatment and referral patterns for psoriasis in the United Kingdom • UK data included in the Global Patient Initiative to Improve Eczema Care • Clinical Practice Research Datalink and Hospital Episode Statistics data from 2021 Note: The data on psoriasis is somewhat historic, collected from The Health Improvement Network (THIN) database between 2007 and 2009, whilst the Global Patient Initiative to Improve Eczema Care study includes only limited data on referrals and diagnosis.

Findings and analysis Psoriasis

Currently, as set out above, some patients find it challenging to secure rapid referral to secondary care, in line with NICE guidance on appropriate management. This can result in patients cycling through unnecessary and avoidable GP appointments before being referred onwards, creating financial and capacity inefficiencies. While it is difficult to definitively identify how many GP appointments could be avoided, due to variations in patient presentation and in clinical practice, evidence from analysis of patient records indicates that those patients with psoriasis who are referred on to specialist care have an average of three GP appointments prior to referral. 34 It is likely that some of these appointments could be avoided, through the implementation of the recommendations set out in NHS England’s referral optimisation guidance. 5 Analysis by the National Audit Office into another long-term condition suggests that reducing avoidable GP appointments and expediting access to secondary care is possible and could deliver savings to the NHS, as well as improved outcomes for patients. 45 The table below sets out a series of calculations on the potential impact of changes to referral practices for psoriasis in primary care over a period of 27 months. ii, 34 Alongside an illustration of current practice, the table sets out two scenarios: 1. Reducing the number of pre-referral appointments to one – it is possible that implementing a comprehensive range of referral optimisation solutions could enable GPs to refer following a single appointment. 2. Reducing the number of pre-referral appointments to two – it is conceivable that either a) multiple appointments will continue to be appropriate for some patients, or b) that it will not be possible for all areas of the country to implement referral optimisation solutions in full, reducing their impact.

ii This was the time period covered by the most comprehensive research into referral patterns carried out in psoriasis care

FROM NATIONAL GUIDANCE TO LOCAL ACTION

Current practice

Scenario 1

Scenario 2

Total number of patients diagnosed

164,763 29,661

Total number of patients referred to specialist care GP appointments per-patient pre-referral

Total number of appointments

88,983.02

29,661.01

59,322.01

Total cost of GP appointments

£2,669,490

£889,830

£1,779,660

Potential cost savings

N/A

£1,779,660

£889,830

Eczema There is less established literature on atopic eczema in England, especially in relation to the cohorts of people with more severe disease who are most likely to require referral to specialist care. For example, there is an absence of published data on the number of appointments that people with severe atopic eczema are likely to have before they are referred. However, research indicates that people with severe atopic eczema typically attend significantly more appointments across primary and secondary care than those with less severe symptoms – attending on average 18.76 general practice appointments each year. 44 This leads to a considerable utilisation of resources in relation to both primary care capacity and funding. The table below sets out a series of calculations on the potential impact of reducing primary care appointments for people with severe atopic eczema, in line with the recommendations made by NHS England for improved supported self-management and referral optimisation. Alongside an illustration of current practice, the table sets out two scenarios: 1. Reducing the number of appointments by almost three quarters – it is possible that implementing a comprehensive range of supported self-management and referral optimisation solutions could enable a significant reduction in utilisation. 2. Reducing the number of appointments by half – it is conceivable that either a) a considerable number of appointments will continue to be appropriate for some patients or b) that it will not be possible for all areas of the country to implement self-management or referral optimisation solutions in full, reducing their impact.

Current practice

Scenario 1

Scenario 2

Total number of patients with severe atopic eczema

9,564

Average number of GP appointments per patient Estimated total annual total number of GP appointments

18.76

179,421

47,820

86,076

Total cost of GP appointments

£5,382,619

£1,434,600

£2,582,280

Potential cost saving

N/A

£3,948,019

£2,800,339

FROM NATIONAL GUIDANCE TO LOCAL ACTION

A snapshot of potentially much larger savings The figures for both eczema and psoriasis above demonstrate that the NHS could generate savings through wider adoption of NHS England’s guidance on referral optimisation. While the cost savings above may appear to be small in scale, it is important to note that the NHS is currently facing significant funding pressures and finding efficiencies has been identified as a key priority for the system. 46 In practice, the total savings from reducing delays to referral are likely to be higher, as the figures above do not take into account several additional cost savings that could be associated with reducing avoidable appointments and referral optimisation, including: • The costs of any investigations or diagnostic tests that could have been avoided pre-referral. • The costs of poorly controlled disease or disease progression in the period between diagnosis, referral and treatment. • The cost savings of reducing inappropriate referrals of patients whose care could be managed in primary care with appropriate training for clinicians and use of care plans. There are also a series of other costs associated with the barriers identified in other parts of the optimal pathway that require a closer examination. They include: • Cost associated with any repetition of treatments once in secondary care, that have already been prescribed and tried while in primary care. • Cost associated with variation of access to the full range of NICE approved treatments or delays to progressing as intended along the NICE approved treatment pathway. • Cost of secondary care follow-ups. If more patients are supported to utilise PIFU and reduce the number of follow up appointments, further savings could be created. It is also possible that referral optimisation could unlock wider economic benefits, due to reduced levels of absenteeism during periods of poor disease control. A recent report found that costs of work impairment, including a combination of absenteeism and presenteeism, to the economy for adult patients with moderate-to- severe eczema were between £6,741 and £14,166 per patient per year. 2 These costs increase with the severity of the condition, with higher atopic eczema severity associated with a more significant negative impact on work productivity. 47 A Work Foundation study estimates four million working days are lost in the UK per year due to moderate to severe psoriasis, at a cost of almost £0.5 billion to the economy. This increases to £1.07 billion when adding the potential cost of lost productivity from presenteeism. 15 Expanding these initial calculations to make a comprehensive financial and resource case for the wider adoption of these changes is therefore pivotal. Doing so could help to realise the ambitions of the NHS and government, such as the target of a 25% reduction in hospital-based outpatient appointments to reduce pressures on primary care, as part of the NHS’ goal of recovering access to GP appointments. 48

FROM NATIONAL GUIDANCE TO LOCAL ACTION

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