On an almost daily basis Changing Faces hears from people and their families who have not found help with how their disfigurement affects their daily lives.
The impact of their altered appearance has not been recognised or understood and even when it has, there is little knowledge or expertise about how to support them adequately. Furthermore neither the health service nor other agencies have the money nor the resource to provide appropriate care. Patients might be facing life changing surgery for cancer, or adjusting to a change in looks after an accident or fire, they might be living with a skin condition, birthmark or scar for which there may be some medical treatment but no cure. All can be distressing, lonely and difficult if unsupported and can have significant impact on daily life whether it be coming to terms with looking different, experiencing teasing and staring as they walk down the street, making friends, and finding work.
Through our work at Changing Faces we know that it needn’t be like this. For over twenty years we have supported thousands of individuals and their families with support, advice and information known as the FACES package available through our helpline, one-to-one support, group work and our online self-help information. It is tailored by Changing Faces Practitioners to each individual or family and enables them to adjust successfully to living with a disfigurement or to supporting their child.
But the reality is that only a relatively small number of patients and their families contact us each year and even those who might receive good integrated care within the NHS such as in cleft and burn care or from our pilot Changing Faces Practitioners (CFPs), and accessing the nationwide Skin Camouflage Service, are only a relative few. Many more need help and support to maximise their chances of well-being and recovery. We advocate for an early intervention multidisciplinary approach by health care teams in primary and secondary care settings across the medical specialties that encompass disfiguring conditions such as cranio-facial, ophthalmology, plastics and dermatology as well as general practice. Ideally an integrated approach where a patient’s psychosocial needs are recognised and addressed alongside their clinical needs would be implemented. We know that this model reduces the distress experienced by patients and also significantly reduces the risk of developing psychological problems later in life. In practice this means that their psychosocial needs be assessed early in their care, whether as inpatients or in the community.
So who should pay for and provide this care? For a relatively small charity operating in a constantly challenging financial environment, raising funds for such activity is often a struggle and only meets a small proportion of the need. Similarly for the NHS where cuts are a daily occurrence, adequate resource, time and training are also unattainable for many. This results in patients’ psycho social care becoming a luxury rather than a fundamental part of their care and yet psychosocial care offered at the right time can significantly improve someone’s quality of life. Between one and twelve CFP sessions (average 4.5) can equip people with the ‘disfigurement life-skills’ that they need to manage their condition. CFPs recruited and managed by an NHS entity will support clinical teams offering care to patients with a disfigurement, their families and health professionals by delivering psycho-social support using the FACES model. There is also a great deal of evidence that the Skin Camouflage Service can have a huge impact on a patient’s quality of life.
I would argue that early intervention in a healthcare setting provides a long-term, low-cost solution and can reduce the workload and therefore cost of other clinicians’ time. A CFP employed by the Royal Hospital for Sick Children in Edinburgh since 2012 has demonstrated that a CFP can reduce clinical contact time and actually save the NHS money. It can lessen the need for repeated contact with GPs and follow-on services such as mental health services if patients become depressed or anxious and also reduce demand for medical interventions to address appearance. Whilst clearly there are difficult choices to be made by the health service on what and how to prioritise funding, I urge further investment and commitment to ensure services meet patient need so that they are better able to manage everyday situations and sustain social relationships, therefore avoiding becoming isolated and depressed.
If you would like further information on how Changing Faces can support the development of psychosocial care within your health care setting, please contact Head of Advocacy, Henrietta Spalding.
Henrietta Spalding is Changing Faces’ Head of Advocacy
Viewpoint represents the author’s views, and not necessarily the views of Changing Faces.