Hidradenitis suppurativa: why diagnosis still takes years, and what UK primary and secondary care clinicians can do about it
In conversation with Dr Hannah Wainman, consultant dermatologist and NIHR doctoral fellow
Hidradenitis suppurativa (HS) is one of the most under-recognised inflammatory skin diseases in UK practice. It affects roughly one person in every 130 registered with a GP,[3] and the average patient still waits the better part of a decade for a correct diagnosis.[2][4]
For the Bright Med interview series, we spoke to Dr Hannah Wainman, consultant dermatologist at Bristol Royal Infirmary and NIHR doctoral fellow researching HS diagnosis and care pathways in primary care, about why that gap persists and what has to change. She spent six years as a GP partner before moving into dermatology, and now co-leads the tertiary HS service in Bristol and chairs the South West Regional HS multidisciplinary team.
From general practice to a tertiary HS service
Dr Wainman's move into HS came from watching a patient group underserved by a general biologics clinic.
"These patients were being seen within a general biologic service and they are such a complex cohort, with so many comorbidities, and the disease is so heterogeneous that patients can present in so many different ways. I felt they weren't being best served within that service."
Her GP background shapes where she sees the real bottleneck: not in the dermatology clinic, but in everything that happens before the patient gets there.
What HS is, and how common it is in the UK
HS is a chronic, relapsing inflammatory disease of the hair follicle: painful nodules, abscesses and draining tunnels in flexural sites such as the axillae, groin, inframammary folds and perineum, leading to irreversible scarring if left uncontrolled.[1][2] Diagnosis is clinical, resting on typical lesions, typical sites, and a relapsing course with at least two lesions in the preceding six months. There is no confirmatory test.[2]
It is more common than most clinicians assume. A UK population-based study using Clinical Practice Research Datalink data found a point prevalence of 0.77%, rising to 1.19% when probable cases were included, with a third of criteria-diagnosed cases previously unrecognised.[3] HS is more common in women, two to three times more prevalent in people of colour, particularly those of African descent,[2] and typically presents in the mid-20s, according to Dr Wainman.
Clinical takeaway: in an average GP list of 2,000 patients, expect 15 to 24 people with HS.
Why diagnosis still takes seven to ten years - hidradenitis suppurativa in primary care
"We know at the moment the average delay to diagnosis is seven to ten years, and it's not getting better."
The evidence agrees. UK primary care data puts the average delay at 7.2 years;[2] a German cohort of 394 patients found a mean of 10.0 years from first symptom to diagnosis, during which patients consulted more than three different physicians and received more than three misdiagnoses.[4]
Dr Wainman breaks the delay into three compounding problems: patients delay presenting out of shame or embarrassment;[5] a presentation looks like an isolated abscess rather than part of a pattern, unless someone checks the record for previous episodes; and confidence does not equal recognition. Her own survey of 183 UK primary care professionals found 74% felt confident diagnosing HS, but only 39% felt confident managing HS-related pain, and confidence did not correlate with knowing when to refer.[6]
"This isn't just about patients not being referred, it's about them not even presenting in the first place, because they feel shame or embarrassment related to the disease."
Clinical takeaway: when you see a second or third "abscess" in a flexural site in the same patient, stop and ask about other sites, family history and time course.
Early treatment matters
"We know that the earlier we start biologic therapy, the better those patients do. And that's the bottom line."
A multicentre real-world cohort of 389 patients found that a longer delay before starting a biologic treatment was linked to a lower chance of response: a delay of more than ten years carried an odds ratio of 1.92 for non-response at week 16 (95% CI 1.28 to 2.89).[7] The same evidence base links longer delay before diagnosis to greater disease severity, more surgery and more time off work.[4]
Clinical takeaway: early referral for moderate or multi-site disease is a treatment decision, not an administrative one.
HS is a multisystem disease, not a skin problem
"You almost become their primary care physician, or you support their primary care physician."
UK primary care data links HS to type 2 diabetes, Crohn's disease, hyperlipidaemia, acne and depression, with strong associations for smoking and obesity.[3] Cardiovascular events and all-cause mortality are raised across multiple cohorts,[8][9] and a Danish registry study found a more than doubled risk of completed suicide.[10]
Clinical takeaway: every HS review is a chance to check blood pressure, lipids, HbA1c, smoking status, mood and bowel symptoms, in partnership with primary care.
Getting the right treatment to the right patient
European guidelines classify inflammatory HS by severity and direct treatment accordingly, combining medical therapy to control inflammation with surgery to remove already-damaged tissue.[1] UK guidance follows the same principle.[11]
Primary care has real options: patient education (making clear that HS is not caused by poor hygiene), wound care, analgesia, topical or oral antibiotics for mild to moderate disease, and off-label metformin.[2]
For active moderate to severe disease that has not responded to conventional treatment, biologic treatments are available on the NHS, subject to a formal response assessment at 12 to 16 weeks, with further biologic options where a first treatment is unsuitable or stops working.[12][13] Not every biologic with a European licence for HS has an active NICE recommendation, so it is worth checking current guidance before assuming access.[14]
"I think we're behind the psoriasis curve, but my hope and my belief is that give us a bit longer and we will catch up, and we will be having similar conversations about patients being disease free."
Several new biologic and other targeted treatments are moving through clinical trials, with recent analyses showing significantly better response rates than placebo for a number of them.[15]
The postcode problem
Asked where she would want to be treated if she had HS, Dr Wainman was specific: within a UK HS specialist centre.
Her survey of 99 UK and Irish clinicians found stark gaps between specialist and general dermatology services: routine pain score recording in 61% versus 29% of cases, access to psychological support in 37% versus 8%, and no access to a multidisciplinary team at all for 79% of general dermatology respondents.[16]
"There was a definite disparity in the availability of care, the availability of multidisciplinary care, the availability of biologics."
Clinical takeaway: recording a pain score at every HS review costs nothing and is one of the most reliable markers of specialist-standard care.
Talking to patients about HS
Much of what Dr Wainman describes as good HS care is communication rather than prescribing.
"It's all about communication, talking it through with them, understanding their concerns and really listening. Some of our drugs do have significant risks associated with them, and it's about having a pragmatic conversation."
"You are the boss of your care, you are in charge of this, not me. If you don't want to do this, I'm not going to be upset. We're going to work together to work out what the best treatment option for you is."
Her practical approach: signpost that no decision is needed on the day, give a helpline number, and invite the patient to call back once they have had time to think.
What this means for your next clinic
- Treat recurrent flexural "abscesses" as HS until proven otherwise, and check the record for previous presentations.
- Ask about groin, inframammary and perianal sites directly. Patients will rarely volunteer them.
- Say out loud that HS is not caused by poor hygiene. It reframes the consultation.
- Record a pain score and a mood screen at every review.
- Refer early where multiple sites are involved. Delay reduces the chance of biologic response.
- Screen for cardiovascular risk, type 2 diabetes, IBD and depression as part of routine HS care.
Watch Dr Wainman full video interview by clicking below:
Frequently asked questions
What is hidradenitis suppurativa? HS is a chronic inflammatory skin disease of the hair follicle causing recurrent painful nodules, abscesses and draining tunnels in flexural sites such as the axillae, groin, inframammary folds and perineum. Uncontrolled inflammation causes permanent scarring and tissue destruction.[1]
How common is hidradenitis suppurativa in the UK? A UK population-based study found a point prevalence of 0.77%, rising to 1.19% when probable cases were included. Around a third of cases meeting diagnostic criteria had not been formally diagnosed.[3]
How is hidradenitis suppurativa diagnosed? Clinically, using three elements: typical lesions, typical flexural sites, and a chronic relapsing course with at least two lesions in the previous six months. There is no diagnostic test.[2]
Why does hidradenitis suppurativa take so long to diagnose? Three reasons compound each other: patients delay presenting because of shame and embarrassment, individual presentations look like isolated abscesses rather than a pattern, and referral to specialist care is often late. Average reported delay is seven to ten years.[2][4][5]
Does delayed diagnosis affect treatment outcomes? Yes. In a real-world cohort of 389 patients, a delay of more than ten years before starting biologic treatment was associated with a substantially lower chance of response, supporting a "window of opportunity" for early treatment.[7]
What comorbidities should I screen for in HS? Type 2 diabetes, Crohn's disease, hyperlipidaemia, acne and depression are all associated with HS in UK primary care data, and smoking and obesity are strongly associated.[3] Cardiovascular events and all-cause mortality are increased,[8][9] and completed suicide risk is raised.[10]
Are biologic treatments available for HS on the NHS? Yes, for active moderate to severe disease that has not responded to conventional systemic treatment, subject to NICE assessment of response at 12 to 16 weeks. Further biologic options exist where a first treatment is unsuitable, ineffective or stops working. Not every licensed biologic has an active NICE recommendation, so current guidance should always be checked.[12][13][14]
Can hidradenitis suppurativa be managed in primary care? Partly. Patient education, wound care, analgesia, topical or oral antibiotics for mild to moderate disease, off-label metformin and comorbidity screening all sit within primary care. Multi-site or inadequately controlled disease should be referred early.[2]
Is hidradenitis suppurativa caused by poor hygiene? No. HS is an immune-mediated inflammatory disease. Telling patients this explicitly is part of good care.[2]
Build your HS confidence with Bright Med
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References
Zouboulis CC, Bechara FG, Benhadou F, et al. European S2k guidelines for hidradenitis suppurativa/acne inversa part 2: Treatment. J Eur Acad Dermatol Venereol. 2025;39(5):899-941. doi:10.1111/jdv.20472
Wainman HE, Lane PCE, Ingram JR. Hidradenitis suppurativa diagnosis and management in primary care: not just recurrent boils. Br J Gen Pract. 2023;73(726):43-45. doi:10.3399/bjgp23X731733
Ingram JR, et al. Population-based Clinical Practice Research Datalink study using algorithm modelling to identify the true burden of hidradenitis suppurativa. Br J Dermatol. 2018;178(4):917-924. doi:10.1111/bjd.16101
Kokolakis G, Wolk K, Schneider-Burrus S, et al. Delayed diagnosis of hidradenitis suppurativa and its effect on patients and healthcare system. Dermatology. 2020;236(5):421-430. doi:10.1159/000508787
Murray N, Truman I, Milligan G, Modi H, Adlard N. Equity and outcome events in hidradenitis suppurativa: exploring effect modifiers associated with diagnostic delay in the real world. Dermatol Ther (Heidelb). 2024;14(12):3211-3227. doi:10.1007/s13555-024-01291-0
Wainman HE, et al. Management of hidradenitis suppurativa in UK primary care: a cross-sectional survey. BJGP Open. 2025. doi:10.3399/BJGPO.2025.0060
Marzano AV, Genovese G, Casazza G, et al. Evidence for a 'window of opportunity' in hidradenitis suppurativa treated with a biologic: a retrospective, real-life multicentre cohort study. Br J Dermatol. 2021;184(1):133-140. doi:10.1111/bjd.18983
Reddy S, et al. All-cause mortality among patients with hidradenitis suppurativa: a population-based cohort study in the United States. J Am Acad Dermatol. 2019. doi:10.1016/j.jaad.2019.06.016
Rohan TZ, et al. Hidradenitis suppurativa is associated with an increased risk of adverse cardiac events and all-cause mortality. J Clin Med. 2025;14(4):1110. doi:10.3390/jcm14041110
Thorlacius L, Cohen AD, Gislason GH, Jemec GBE, Egeberg A. Increased suicide risk in patients with hidradenitis suppurativa. J Invest Dermatol. 2018;138(1):52-57. doi:10.1016/j.jid.2017.09.008
Ingram JR, Collier F, Brown D, et al. British Association of Dermatologists guidelines for the management of hidradenitis suppurativa (acne inversa) 2018. Br J Dermatol. 2019;180(5):1009-1017. doi:10.1111/bjd.17537
National Institute for Health and Care Excellence. Technology appraisal guidance for a biologic treatment for moderate to severe hidradenitis suppurativa (TA392). Available at: nice.org.uk/guidance/ta392
National Institute for Health and Care Excellence. Technology appraisal guidance for a further-line biologic treatment for moderate to severe hidradenitis suppurativa (TA935). Available at: nice.org.uk/guidance/ta935
National Institute for Health and Care Excellence. Terminated technology appraisal of a biologic treatment for moderate to severe hidradenitis suppurativa (TA1028). Available at: nice.org.uk/guidance/ta1028
Garg A, Cohn E, Midgette B, Frasier K, Strunk A. Efficacy and safety of medical interventions for moderate to severe hidradenitis suppurativa: a living systematic review and network meta-analysis. JAMA Dermatol. 2025;161(9):931-940. doi:10.1001/jamadermatol.2025.1976
Wainman HE, Ingram JR. Secondary care management of patients with hidradenitis suppurativa in the United Kingdom and Ireland: a survey of current practice. Clin Exp Dermatol. 2026. doi:10.1093/ced/llag132
Clinical information in this article is for UK healthcare professionals and is current at the time of publication. Always check the BNF, the relevant NICE technology appraisal and your local formulary before prescribing.
