“We use storytelling to illustrate the impact of our care.”

For Hospice Care Week we asked one of our clients to share their experience of using stories and film to promote their work.

It’s a tricky one isn’t it as a hospice is a place of sanctuary for patients and their families. How do you share personal stories in order to help raise funds and awareness without exploiting the very people you are caring for?

To help answer this question, we asked Janet Parsons, Head of Communications & Donor Marketing at St Barnabas House and Chestnut Tree House how they do it.

 Tell us about Chestnut Tree House?

Chestnut Tree House is the children’s hospice for East and West Sussex and South East Hampshire.  We care for children and young people who have life-shortening illnesses which means they are unlikely to reach adulthood. We provide respite care at the hospice enabling families to have a break and spend precious time together as well as providing care in families’ own homes.  When a child sadly dies, we are there to provide end of life care and pre and post bereavement support for the whole family.

How do you use storytelling in your work?

We use storytelling to illustrate the impact of our care.  Many of the families we care for receive little or no other support so Chestnut Tree House is a real lifeline for them.  Many people have preconceived ideas of what a children’s hospice is like – they often think it must be a very sad place – so by sharing families’ stories we are able to dispel some of the myths around children’s hospices and show the breadth of our care services.

What are the steps you take to make sure children and their families are comfortable with the storytelling?

We work with our Care Team to identify children and families who might be willing to share their stories.  We contact the families to explain why we would like to use their story, how we will do this, which channels we will use, etc.  We interview the family and either write up their story or video them depending on what the story is for.

At all stages, we ask the family to approve copy and media.  We take pains to explain the impact of sharing their story, that it will be in the public domain and to check that they are comfortable with this.  Some families are happy for their story to appear in print, in a direct mail campaign, for example, but not on social media.  We respect the families’ choices and decisions and, if they change their minds, we will withdraw the story.  We work closely with the Care Team at all times to ensure the family is supported throughout the process.

How do you manage the issue of consent and do you retire stories if a child is no longer using your services?

We have a media consent process where the Care Team collect the consent from the child and / or their family to use their images, story, quotes, etc.  Media consent is indefinite unless a child dies or is discharged from our service, whereby we are informed by the Care Team.  However, children and families can withdraw their consent at any time.  Media consent forms are kept securely and we have recently acquired a digital asset management system which enables us to catalogue and search for media more effectively.  There is a naming convention which ensures the subjects’ anonymity and enables us to catalogue and search efficiently and consistently.

What would be your advice to other children’s hospices who may be thinking about investing in photography or film?

Photography and film are the best ways to illustrate what you do.  The adage “a picture paints a thousand words” is definitely true as you can often convey the story better with an image or short video and of course they will get better engagement on social media platforms too.

Why did you choose to work with Mile 91?

Mile 91 are excellent storytellers and their experience with other charities, particularly with children’s charities, means that they have a good understanding of how to convey the story, to show the need for our services and the positive impact they have on families.  They do not shy away from hard-hitting stories, if that is what is needed.  Mile 91 take the time to really understand the brief, what the hospice does and what we want to convey as well as getting to know the families involved.  They are mindful of the families’ situations and always work with respect and compassion.

What are some of the potential challenges of filming in a hospice and why is it important to have a production team who understand this?

Many of the children we care for are very poorly and a lot of them cannot communicate verbally so it is important to recognise this when filming and not to expect children and families to ‘perform’ on cue!  It is important that the production team understand this and are ready to be flexible and to capture the moments as they arise.  The nature of a children’s hospice is that things do not always run to plan or time so the production team need a lot of patience and ingenuity.

Huge thanks to Janet for this interview and for the children, families and staff that we worked with during the making of this film.

To find out more about Hospice Care Week, take a look at Hospice UK’s ‘This Is What It takes’ campaign.

Chestnut Tree House film