There is one organ of the body which is virtually bound to cause problems to everyone at some point in their lives, as likely when young as old. Problems with this, the largest organ of our bodies, can cause embarrassment, pain, disability and death to all ages, and account for 1 in 5 of all GP appointments. In fact over 720,000 people visit their GP in Wales each year with problems with this organ. It's almost inevitable it will, at the very least, cause each of us some discomfort this year. Yet across the UK it attracts little attention or priority, funding and minimal training for medical students or those working in the medical professions.
I'm speaking of course about our skin.
From teenage acne, sunburn, psoriasis, atopic dermatitis, eczema and so on, through to truly crippling and debilitating and often rare conditions such as Epidermolysis Bullosa …..all the way to malignant melanoma skin cancer conditions which pervade the lives of nearly all of us at some point in our lives.
Many diseases are so rare that there may be only one or two sufferers in Wales (eg. Pachyonychia Congenita) yet their impact can be truly dreadful.
Skin Care Cymru
A charity, Skin Care Cymru is working to put skin disease far higher up the agenda in Wales and to give a voice to those who live with any one of hundreds of conditions. A quick visit to their website, especially the patient stories vividly illustrates my point.
There is a pressing need to identify what the landscape is for skin treatment across Wales. At the moment, no one knows what provision deficits exist or indeed the extent of best practice in the NHS. Skin Care Cymru is presently carrying out a wide ranging and comprehensive scoping project, using data collated from FOI requests, to map skin related service provision across Wales. There is a similar project being undertaken by the APPG on Skin in England. Further research needs to be done to explore the implementation of NICE quality standards for Psoriasis in Wales
The portfolio of patient stories captured and disseminated by Skin Care Cymru and other patient support groups for people with skin diseases, including Changing Faces, clearly convey the negative impact of skin conditions on schooling, relationships, self-esteem and social and leisure activities.
What is already known is that there is no comprehensive and widely accessible psychosocial provision for people in Wales living with chronic, acute and/or debilitating and disfiguring skin conditions. The skin is the most visible part of our bodies by definition. So any disease or problem is apparent to all and sundry. There is no privacy for many sufferers. Just recall the miseries of teenage acne for many of us. But imagine a girl of 14 with psoriasis going to a swimming pool with friends, plucking up the courage to change into swimwear only to be told to leave by the staff on the grounds it might be catching. That has happened in Wales.
For those with facial disfigurements, and it has been estimated there are over 25000 of them and a much larger number with bodily disfigurements, there is no dedicated psychosocial help available in Wales. It is vital that there should be, as part of a holistic approach to health care. Without it, unresolved issues will lead to other illness caused by stress with the resulting impact on health provision across the board.
There is a unique opportunity for Wales to lead not only the UK but Europe and even the world in providing this essential service. In England the report by the APPG on Skin identified the need for dedicated psychosocial services to tackle the psychological needs of patients with skin disease. In fact NICE quality standards for the treatment and management of Psoriasis set out the need to offer psychosocial support. However, this remains an ‘optional’ element of care and as such is often unresourced and unavailable to the majority.
Research shows that people with skin disease including Psoriasis are at higher risk of suicide.
It is also well documented that very often the side-effects of medication and treatments that are used to manage skin conditions include depression.
This demonstrates the need to prioritise the emotional and psychological well-being of people living in Wales with skin conditions.
Research often focuses on the needs of patients with well-known skin conditions, for example, Psoriasis. However, there are known to be more than 2000 diagnosable skin conditions, and little is known about the emotional and psychological wellbeing of people affected across all of those skin conditions in Wales.
Further research/ work needs to be done to understand the impact of skin disease on people’s lives specifically in Wales. This work needs to be translated into and reflected within the medical curriculum for nurses and medics. Health professionals need to recognise the burden of the treatments and their associated side-effects, as well as the impact on quality of life associated with many skin conditions as well as the physical symptoms.
Understanding the impact of living with skin conditions can inform a dedicated service in local health boards to address patients’ psychosocial needs, occupational therapy and access to the provision of services including skin camouflage services.
The provision of such psychosocial support services needs to be evaluated and understood in terms of impact on quality of life as well as to establish clinical and cost effectiveness. Key stakeholders including Skin Care Cymru, ABMU Health Board and others are keen to establish a pilot project to deliver psychosocial support to people affected by chronic and often debilitating skin diseases and conditions anticipating that the outcomes and impact that such provision will have is in line with the strategy for Prudent Healthcare in Wales.
Skin: the challenges
A challenge exists in that skin care (principally the medical specialty area of dermatology) is considered to be the Cinderella of the NHS in many respects. For example:
- · Despite the huge number of primary (and secondary) care appointments and the extent of skin diseases in our local populations the medical curriculum does not give enough time or space for specialist training and as such to encourage interest in a career in dermatology. Until dermatology is given a stronger status in the curriculum the standard of provision is only likely to get worse and the importance of dermatology will continue to be undermined and underestimated. By failing to provide adequate education in this field of Medicine, we are failing to meet the needs of patients.
The scoping study conducted by Skin Care Cymru is requesting detailed information from the Higher Education institutions delivering medical education to under/postgraduates to identify the amount of time committed to teaching dermatology. The results of this work need to be considered and acted upon by the Welsh Government.
- · The scoping project will also assess the training programmes for nurses being delivered in Wales to assess the extent and components of education being delivered in dermatology.
- · Strangely, despite skin disease being the most common reason for patients to see their GP, the GPwSI with a special interest in Dermatology is a rarity! Only one known in south Wales (that being in ABMU). Again, this needs to be explored, understood and measures to rectify such an imbalance.
- · There is a problem in attracting and keeping dermatologists in posts around Wales, consultant posts are advertised and remain unfilled across Wales. As a result there is a burden as a result of the shortage of dermatologists in the UK. Investing in and keeping talent in the medical specialty area needs to be given priority.
What are the unmet needs of patients in Wales living with skin disease and conditions? What are the best practices and innovations to celebrate in skin health in Wales?
There is inadequate evidence available to forumulate a clear picture of the landscape of services provided to people in Wales living with skin disease and conditions. Measures have been taken by a volunteer-run charity, Skin Care Cymru, to provide an evidence base to inform dialogue around ways to enhance this segment of the Welsh population. It is vital that unmet needs are understood in order to best inform the development and design of services and the enhancement of medical training of Tomorrow’s doctors.
Otherwise, the unmet needs in relation to skin care in Wales threatens to derail progress in delivering ‘patient-centred-care’.
However, we also need to capture the best practice and innovation that is occurring across Wales in this area of the Life Sciences sector. For example, the flagship Welsh centre for Burns and Plastic Surgery which serves populations in Wales and England and is home to the Centre for Regenerative and Reconstructive Surgery (who are currently pioneering groundbreaking innovation and research in cartilage regeneration. And the Welsh Wound Innovation Centre in Llantrisant, a centre of excellence in the prevention and treatment of wounds. There are plenty of reasons to celebrate success and development too!
However there is a need to establish a mechanism to draw together all these issues and form a platform to enable the voices of patients, clinicians, entrepreneurs and welsh government to be heard and to facilitate collaboration and co-production in this area of health.
Collaboration and Partnership
Collaboration and Partnership are critical in ensuring Dermatology achieves attention to address unmet clinical and patient need. As such, Skin Care Cymru have been instrumental in establishing a Cross Party group on Skin in the Welsh Assembly. The inaugural meeting is set for October 2015. The findings from the All Wales audit of dermatology and plastic surgery services will provide an insightful detailed outline of what is happening in this area of health. In addition, key stakeholders involved in innovation and R&D will be engaged in the dialogue to seek improvements for the benefit of nation’s health as well as to build on the success and best practice in this specialty area.
Call for action and commitment
We are asking for:
1. A commitment for cross-party representation at the newly established Cross party group on skin in October to discuss the plethora of issues raised in this speech
2. Seriously consider and explore the implementation of a pilot intervention for the provision of psychosocial support for people in Wales – ABMU/ Welsh Centre for Burns and Plastic Surgery (ideally great to have a meeting with government team and other key stakeholders to plan out and resource a pilot) and a real opportunity to be leading the way in this area in the UK
3. An endorsement of the work that Skin Care Cymru are doing to raise the profile of dermatology and skin health in Wales and a commitment to respond to the upcoming report by Skin Care Cymru which will outline services across Wales. This will be launched in early Autumn. The APPG on Skin will be revealing results from their very similar project around the same time (Autumn) and comparisons will surely be quickly drawn between England and Wales.