Working towards integrated care for patients with skin conditions
Jessica Mitchell MSc, Policy Advisor in Health, Changing Faces
Background reading
http://www.nhs.uk/Livewell/facialdisfigurement/Pages/VictoriaWright.aspx
Changing Faces calls for psychosocial care to be placed on equal footing with physical care with better resourcing of integrated community dermatological services
'Look at Me'
Changing Faces’ ‘Look at Me’ report finds that effective treatment for the psychosocial effects of skin conditions is the exception rather than the rule. Primary care health professionals treat more than 90% of people with skin conditions and patients report that high quality community care is at the heart of mental and physical wellbeing. Specialist nurses have a central role to play in offering ongoing support and advice during medical treatments as well as referring patients for psychosocial support when necessary. However, a lack of funding and specialist dermatology training means under-development of services ensuring integrated health and social care.
The Challenge
Ask anyone in the UK and they can probably reel off a list of skin conditions; acne, eczema, psoriasis – we all know someone with one of them, or perhaps we are dealing with a skin condition ourselves.
They are common enough: more than fifty percent of people in the UK experience some type of dermatological condition every year and many of them look to their GP surgeries for help. In fact, skin issues can make up to around one fifth of all GP consultations, and yet the common nature of skin conditions belies the serious effects they often have on people’s lives.
A 2013 report from the All Party Parliamentary Group on Skin (APPGS) found that there is a tendency to “trivialise” skin diseases amongst the public and non-specialist health professionals and a lack of awareness of the “profound physical, psychological and social consequences for those who live with them, for carers and for family members.”
Changing Faces’ Look at Me report [1] uncovered a genuine commitment amongst primary care health professionals to building integrated dermatology services, but this was set against concerns about just how to resource and provide such services.
Psychosocial Effects
Michael Willcocks, a supporter of Changing Faces became involved with the charity’s campaign for better integrated care after his own experience of acne. He didn’t get the physical or emotional care he needed until he was in his forties - more than two decades of, in his words, “being held hostage by acne and denied the opportunity to live life how I otherwise would have.”
His experiences are echoed by others supported by Changing Faces.
People with skin conditions often report depression and social anxiety as well as psychological difficulties related to stigma, shame, a lack of self-confidence, anger, guilt, or loss. The visibility of skin conditions is particularly challenging in a world that seems increasingly focused on assessing people on how they look. The chronic nature of many skin conditions adds to the difficulties people face in coping and accessing ongoing support.
For Michael, there are two key issues at the heart of how the multiple effects of skin conditions can often be overlooked.
One is the difficulty that patients can have in raising their concerns. “The problem with skin conditions is that the degree of upset renders people mute. I couldn't even bring myself to say the word ‘acne’ out loud until the age of 42.” This silence is compounded by what he sees as a tendency by health professionals to let patients take the lead in raising concerns during consultations.
Michael’s advice to GPs and primary care nurses is to “be proactive in your assessment. The patient is actually longing to unleash their emotions, and if they leave the surgery and that side of things hasn't been brought out then it could lead to much bigger problems down the line.”
...being held hostage by acne and denied the opportunity to live life how I otherwise would have...
...I couldn't even bring myself to say the word ‘acne’ out loud until the age of 42.”
Building Integrated Services
Changing Faces’ research has uncovered many challenges around the development of integrated care plans for each individual patient with a skin condition. Primary care health professionals highlighted a range of concerns including;
- a lack of consultation time
- alack of specialist dermatological training including around the wide variety of skin conditions and associated psychosocial issues
- under-funding for the development of specialist community dermatological services that include expert nurses
- a lack of referral routes for psychosocial care even when needs are identified
The government’s mental health strategy ‘No health without mental health’ [2] asserts its commitment to ensuring that quality of life and health outcomes must go together for people with long term conditions, but there is limited evidence that this is yet making a significant difference to people with skin conditions.
Changing Faces has found that integrated services at primary care level are the exception rather than the rule, whilst the APPGS reports that only three out of 127 hospitals in the UK have dedicated psycho-dermatology services.
The Street Lane example
The Community Dermatology Service at the Street Lane Medical Practice in Leeds is one primary care service that does offer patients with skin conditions a fully integrated service. It is led by Dr Lesley Sutherland, a GPwSI in Dermatology, with the support of two Specialist Dermatology Nurses (SDNs) who are also Independent Prescribers. The clinic sees more than 1,000 patients a year with the SDNs running weekly skin clinics. It was set-up in 2006, but only in the last six months has it gained NHS funding for two monthly psychosocial support clinics run by Changing Faces practitioners.
The CF practitioners provide psychological and emotional support to patients and regular Changing Faces Skin Camouflage Service clinics where people with skin conditions learn how to apply special prescription creams. Although the main body of the work is made up of people with acne, eczema and psoriasis, clinicians see people with a wide range of skin conditions including rosacea, vitiligo, birthmarks and marks from self-harm. A care pathway has been developed whereby more complex conditions can be referred to the hospital, but other cases remain in the community.
According to Dr. Sutherland, if people with skin conditions are not offered psychosocial support, this impacts on resources in terms of follow-up appointments and the need to refer clients for higher-intensity psychological services. “I will see the same people booking appointments again and again if I miss what it is that is worrying them. I would say that the majority of my time with patients is actually spent on the psychosocial side of skin conditions,” she says.
One of the surgery’s nurse specialists, Sister Nicola Whitfield, highlights the significant impact of the SDNs on the service noting that patients more likely to “sustain their way through treatments that can be physically and emotionally challenging with the practical support and advice of nurses.”
Patients can also be referred to other psychosocial care services including those provided through IAPT (Improving Access to Psychological Therapies) and specialist community organisations.
Street Lane’s model of integrated care is just one way patients with skin conditions can be provided with effective medical and psychosocial care. Bristol Community Health has a Dermatology Service run by a team of specialist nurses led by Lynne Skrine, herself a nurse with particular expertise in dermatology, particularly tissue viability.
Like Street Lane, the nurse specialists provide an expert service that supports people through difficult treatments and nurses are encouraged to ensure patients are referred for emotional and social support where this is needed. The issue for Lynne Skrine is that there needs to be a “great deal more psychosocial specialist support to tap into”.
I will see the same people booking appointments again and again if I miss what it is that is worrying them...
Psychosocial Approaches
Research shows that the clinical severity of a skin condition is not directly correlated to the degree of emotional and social stress experienced by the patient, meaning that health care professionals need to be aware that any patient can be vulnerable.
Changing Faces knows that about 30% of patients do well on their own, but others will benefit from extra support. Some patients will simply need high quality information about their condition or access to self-help guides. Others may benefit from referral to higher-intensity psychological support services including one-to-one therapy or peer support.
Changing Faces has developed its own package of psychotherapeutic and psycho-educational support services, FACES, which focus on developing resilience and self-esteem. We recognise that a range of psychosocial approaches are likely to be useful, but back Lynne Skrine’s call for the development of specialist services so that primary care professionals can be confident in their referral routes.
What you can do
Changing Faces research shows that patients want specialist care for skin conditions and they would rather receive this care in the community if possible.
Following publication of our ‘Look at Me’ report, we are pulling together an alliance of health professionals, with a focus on those working in primary care, to advocate for the development of health care that comprehensively and routinely addresses the physical and psychosocial needs of patients with skin conditions as part of patient care pathways.
If you are interested in finding out more visit www.changingfaces.org.uk and be sure to check out our forthcoming ‘Beautiful Moment’ film on the positive impact of integrated care for people with skin conditions.
“...be proactive in your assessment. The patient is actually longing to unleash their emotions, and if they leave the surgery and that side of things hasn't been brought out then it could lead to much bigger problems down the line.”