Huntington’s Disease and Casualty

Casualty’s latest storyline featuring Emilie - Cal and Ethan’s birth mother who suffers from Huntington’s Disease - concluded in the episode ‘High Tide’ this week, but what was it like to tell her story, and how did the Casualty team bring Emilie’s story to life?

We spoke to Actress, Carol Royle; Researcher, Ross Southard and Cath Stanley, Chief Executive of the Huntington’s Disease Association (HDA) to find out a bit more.

“We knew that this storyline was going to be a really big one for our characters, Cal and Ethan, but also for Emilie, who has Huntington’s Disease,” Researcher Ross Southard told us. “It was a huge undertaking for the show and we knew early on the importance of portraying Huntington’s Disease and the character of Emilie as truthfully as possible.“ Ross’ research soon led him to the Huntington’s Disease Association and to Cath Stanley.

Cath explains “It was with great excitement and enthusiasm that the Huntington’s Disease Association accepted the invitation to work with Casualty on the development of a storyline about Huntington’s Disease. The opportunity to comment on scripts and work with the actress who is symptomatic of HD and those who discover that they are at risk of inheriting the disease has been invaluable.”

Cath worked with the Casualty script team to give information and advice over a number of months, reading scripts for each episode and offering support. “We have strived to ensure the best possible portrayal of the disease and were able to facilitate the cast and crew in meeting real people and families affected by HD.”

Actress Carol Royle was cast in the role of Emilie during this process and she knew immediately that it was going to be a really big challenge. Carol told us, “I knew very little about Huntington’s Disease before I took on the role of Emilie, although I had heard about it through a family friend, so I understood the devastation that it can cause in families. The challenges of playing a character with Huntington’s Disease were, firstly, the responsibility of trying to portray it accurately. I wanted to get the truth of the character of Emilie across, quite apart from the HD, so for example, the horror and the damage caused by having the boys taken from her, and the shock, relief and joy at meeting up with them again. I wanted to show how much she loved, and still loves them.”

To find out more about HD and the reality of the disease, Carol and Ross went to Rapkyns Care Centre in Horsham to meet the team and some of the service users who have Huntington’s Disease there.
Carol explains “I have met people who have now become my friends, both who have HD and also those who care for HD sufferers. I have learned that, in order for people who suffer from HD to be understood, and helped, this little known or understood disease simply must be given the attention it needs.”

“Visiting Rapkyns really was an invaluable experience,” Ross added. “We met some incredible people, both staff members and those suffering from HD, each with real personalities and stories and lives. Huntington’s is such a cruel disease, but my view of HD really changed when I met those at Rapkyns. It was a real privilege.”
Carol continued to research Huntington’s Disease herself reading many articles and watching many videos on the internet. The team also had specialist HD advisors from the HDA on set whilst filming Emilie’s scenes to help to make Carol’s portrayal as authentic as possible.

Carol says that one instance in particular sticks out for her, “One of the HD advisors on set with me during the first episode handed me a document highlighting how it feels to be an HD sufferer; as I read through the sentences, I felt moved to tears, and I kept this piece of paper with me at all times during my time on Casualty. It really helped me to focus on how it feels to suffer from HD.”

“It has been an extremely rewarding and important storyline for us” Ross explains. “We really hope that Emilie’s story and subsequently Cal and Ethan’s story will help to highlight and raise awareness of HD and continue to help those affected by the disease.”

Cath explains why it has been so important, “Many of the family carers caring for someone with HD are watching a mirror image of what may happen to them. This means that there are many sensitivities when running a storyline about HD, but it is great that the storyline has run over several episodes. As well as raising awareness of the illness itself it has highlighted some of the emotional dilemmas in discovering you are at risk of the disease. Raising awareness of HD in the general public helps families feel more able to talk about their own circumstances and stories.”

Huntington’s Disease (HD) is a rare genetic disorder that affects about 5,700 people in the UK. Every child born to an affected parent has a 50% chance of inheriting the gene that causes the illness, and if they inherit the gene they will develop HD. HD is a complex illness that presents with a triad of symptoms including cognitive, emotional and motor symptoms which results in a devastating combination of mental health problems, thinking changes and profound physical disability. Prognosis is 10 to 15 years from onset of symptoms.

The HDA is a patient led organisation that supports families affected by HD across England and Wales. For more information about their work, please visit http://hda.org.uk/hd/what-is-hd

For further information and support on our episodes, click here.