Elsevier

Paediatric Respiratory Reviews

Volume 17, January 2016, Pages 39-41
Paediatric Respiratory Reviews

Short communication
Poetry, Music, Writing and Painting; Developing the artistic talents of Adults with Cystic Fibrosis

https://doi.org/10.1016/j.prrv.2015.08.007Get rights and content

Summary

Art is an expressive outlet for the physical limitations and emotional frustrations of living with a life limiting condition such cystic fibrosis. In the Manchester Adult Cystic Fibrosis Centre we have facilitated the sharing of the inherent artistic talent of our patients with the support of painters, musicians, potters, creative writers, photographers and textile specialists and our own ward staff in our dedicated 22 bed CF inpatient unit. The programme has provided some splendid works that enliven our ward and, more importantly, continue to inspire our patients as they attempt to overcome the socially limiting consequences of hospital admission.

Introduction

The mean age of adults with cystic fibrosis in CF centres is 45 years or in similar terms they are surviving into the fifth decade of life. This amazing improvement in survival achieved over the last three decades exceeds that of any cancers. The explanation for this improvement is quite simple. Medical care is best delivered by very experienced Multidisciplinary Teams from CF centres and is associated with better outcomes [1]. The personal cost the CF patients pay for this improved survival is a huge burden of required care delivered either at home (self care) or in hospital. Admissions to hospital for CF patients may be a routine 2 week admission several times a year or for much longer periods of time especially if waiting for a double lung transplant. In Manchester we have a Unit with a dedicated 22 bedded ward just for CF patients. Each room has en-suite facilities and sky television for the women to watch “chick-flics” and the men to watch sport. However, although the CF patients can communicate with each other using Facebook they are not allowed to socialise due to the risk of cross infection. A feeling of isolation is inevitable.

It has been appreciated for some years by those involved in CF care that the patients are artistically multitalented. Some have even suggested that this gift is related to the basic genetic defect although there is no evidence for this surmise. It does not appear to be related to sickness level as artistic talent appears to be equally distributed amongst all patients. This artistic expression covers many disciplines. Some of our CF adults are gifted painters, writers of poetry and song, actors, musicians, photographers, graphic designers and novelists. Some CF adults have developed and progressed this artistic interest into a vocational career. Over the last year, one of our CF adults has performed at Glastonbury Festival and another has published a successful biography. Others have become actors, film directors and several have become successful graphic designers. Our unit is also adorned both on the ward and the outpatients with paintings and drawings done by our patients.

Many years ago, we recognised the inherent artistic talent that CF patients possess and decided to develop a ward based arts program which would occupy and interest the inpatients and thereby make their prolonged stay more tolerable and for time to go by more quickly. The aims of the art work project are set out in Table 1

Over the last 20 years (1994-2015) CF patients have been involved in a wide variety of arts projects in conjunction with Lime (arts in health through creation and creativity). These projects have involved cooperative /creative work with painters, musicians, potters, creative writers, photographers, textile specialists and ward staff and social workers. Numerous projects have been have produced long lasting benefit. The first creation was a stained glass ceiling adorning the entrance to the ward, Closer inspection revealed a heart and two lungs. More recently superb decorative glass sculptures have been positioned at the entrance to the outpatients; paintings, poetry and striking photographs line the walls of the ward and the outpatients. One emotive pastiche from Hannah desperately awaiting a double lung transplant shows a radiograph of her very damaged lungs and the second radiograph shows a flower arising out of normal looking lungs symbolic of how her lungs will look after she would have received her transplant (sadly the call never came). Well over 18 projects have successfully been completed.

The funding of the artists and materials for these projects has on occasions been very expensive especially the decorative glass sculptures. The costs of each project have come for the CF endowment funds. The CF patients and CF parents have been the main contributors to the endowment funds through their many fund raising activities.

Perhaps the most poignant work produced by the patients is their poetry. Often of very high quality but also opening a window and insight into the thoughts and inner feelings of a CF individual trying to lead a normal life but also battling with an incurable disease. Sometimes the depth of poetic expression has been at odds with how the CF team have perceived the patient. This unusual insight provided to the CF team has sometimes generated an improved medical management plan.

Here are four examples of the patient's poetry

This poem is written by quite a hard individual. The sensitivity of the words and deep personal expression are completely at odds with the observed persona who comes to clinic.

This poem is written by one of our older patients who appears to us to be forever cheerful but this poem reflects a real inner sadness although it concludes on a cheerful note.

This poem was written by Charlotte whilst waiting for a transplant. She was beautiful, shy and ethereal. However the poem is a powerful representation of how she appeared to others and the gentle words truly reflect her inner calmness whilst she waited in vain for the transplant which never came.

This is a fiery poem from a patient who was somewhat inscrutable but always polite to staff. Yet inside and through this poem he expresses a real anger about social injustice but a real personal angst about how he fits into a difficult world.

Over the last 2 decades the artwork undertaken on the Manchester Adult CF centre has produced many beneficial outcomes both for the unit and the patients. The walls of the unit are crowded with paintings and photos some poor, some wonderful, some sad and some happy. The art work has been exhibited at the Cube Gallery in Manchester and one piece of art in the British Medical Journal. Patients gained skills in a variety of artistic techniques including mono-printing, ceramic painting, and 3-dimensional work. 15 patients achieved Open College Network accreditations.

The core aim of the art work projects was to occupy and divert the CF inpatients from the daily grind of living in a hospital for weeks and sometimes months. The artistic expression in its broadest sense provided the patients with opportunities to thoughts and feelings which they had rarely previously explored, a sense of relaxation which was priceless, much fun and a chance to interact with staff on a much more personal and philosophical level.

The success of the many art projects is summarised in this patient's quote.

“I enjoyed the art work so much. I was only ready to go home when I had finished my project. The escapism I found whilst producing the art work helped me to relax and be preoccupied in my art enabling me not to dwell on my ill health and be positive each day.”

Reference (1)

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    Clinical outcome in relation to care in centres specialising in cystic fibrosis: cross sectional study

    Br Med J

    (1998)
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