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
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FROM NATIONAL GUIDANCE TO LOCAL ACTION
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