The aim of Rare Beauty is to highlight the far-reaching impact of rare diseases and there can be few who experience this as much as the chaplaincy team in a hospital do. They are there when families feel at their most desperate and when people need a listening ear or simply a shoulder to cry on. No matter what your religious preference, in a time of need, it must be comforting to know that this team is on hand.
The head of the chaplaincy team at Birmingham Children’s Hospital is Rev. Paul Nash. In addition to a wide array of specially made shirts he also has a ready smile and the ability to put everyone at ease. As part of the Rare Beauty project he explained his role and how he deals with the day to day stresses of such a demanding role.
“I have been at Birmingham Children’s Hospital 15 years this year and I have been Senior Chaplain for about 12 of those years. My role is to head up the ecumenical team of the chaplains at Birmingham Children’s Hospital. We have lots of different faiths, six world different religions and therefore lots of traditions within each. It is a very lively and vibrant team seeking to serve the patients, families and our staff.
“Our role with the families and the patients is to look after and support their religious, spiritual and pastoral needs and care. With the religious care we offer them support in the faith that they belong to. With their spiritual needs, it would be helping them in things like finding meaning and purpose and how they can remain connected in their community. With pastoral care, we would see it as offering a listening ear. We provide that practical support of being there and being alongside the families in their times of joy and struggles.
“When we have a particularly difficult day, which happens quite frequently, the first thing we do is support one another as a team. We are always there for each other at the beginning and end of each day to chat things though. One of the things we try to do is to leave as much as we can here but we are human, like everybody else, and we do take things home. First thing I do when I get home is normally watch about half an hour of a comedy program. I am on Big Bang Theory at the moment and so that is a part of my de-stressing system.
"I plan my year 12 months in advance so if you got my diary out you would see all my holidays, all my weekends away, all my days off, my annual retreats, writing time and study time all in it. I plan it with my wife a year in advance just to make sure I get all that time off to recharge and rewind. It allows me to refresh so I am here for the families, patients and the staff.
"As a chaplain one of the main differences is that you realise very quickly that this is not your space. With the families and us, we are all visitors. When you work in a church or mosque it might be yours but you come and work in a hospital it is not your place. It is really very different. The other distinctive is you are relating to families, and the normal day, is them struggling with some of the very worst things that life can bring and throw at people. These things make it very different to being a local minister or local religious leader. It kind of raises the temperature of our normal life.
“We try to find people who are a good fit for the role and that is very important. You have to have people who are ready to respond quickly to an emergency and who can as quickly offer a very profound prayer or just sit and talk about the football results from last weekend and move in between those two things very quickly which most of us do and enjoy doing."
The Rare Beauty project has been designed to encourage people to want to know more about what is happening in the images. We have introduced beauty into every day scenes that people with rare diseases find themselves and through these images we will tell the story of the people, their families, friends and hospital staff involved in their care. We are grateful to BBC Children in Need for their support and to Birmingham Children's Hospital for their assistance.
If you would like to read about one of the families who have been supported by the haplaincy team you can click here.