Patientforeningen for Lymfekræft og Leukæmi (LyLe), Denmark
A patient group focusing on lymphoma and leukaemia was the start of Patientforeningen for Lymfekræft og Leukæmi (LyLe) in Denmark.
“There were no specific support groups for patients with lymphoma or leukaemia and it was seen as being very important to have somewhere for these patients to go to get support and information for their particular needs,” said Rita Christensen, the president and chair of LyLe.
LyLe was formed in September 2007 and Rita got involved as a volunteer in November 2007.
“I discovered LyLe on the internet. I had written a book about my experiences with chronic myelogenous leukaemia (CML) and I wanted to donate the profits from the book to an organisation. When I read about LyLe, I decided I had to work for them,” she said.
In 2008, Rita was elected to the board of directors and at the end of 2013, she became the president and chair of LyLe.
Evolution of LyLe
Since its inception, LyLe has changed in many ways.
“When LyLe first started, everything we did was for all haematological diseases. When I became president and chair, I decided it was very important for patients to get information about their own disease rather than information about all haematological diseases,” Rita said.
Today, LyLe has annual events that focus specifically on the different haematological diseases it supports; namely, acute myeloid leukaemia, acute lymphocytic leukaemia, chronic lymphocytic leukaemia, CML, and myelodysplastic syndrome. This also supports LyLe’s main objective.
“Our main objective is to provide information about the different cancers we support. We have a magazine, called LyLe Focus, which focuses on the different types and that also helps us achieve this objective,” she said.
Another objective is to meet the different needs of members.
“Some members want to meet other people in person, others want to meet through Facebook, and a third group only wants to write or chat. So, we have expanded our reach with Facebook, Twitter, YouTube, and Instagram,” she said.
Challenges Facing Danish Patients
Until now, a big challenge facing patients in Denmark was obtaining disease information.
“There wasn’t a lot of information available about leukaemia and lymphoma but, with the services LyLe provides and the purchase of the Blood Cancer DK website, everyone can find us,” Rita said.
Another challenge facing patients is the cost and timeliness of treatment. The Danish government has unveiled a new plan—Cancer Plan IV—the objective of which is to ensure patients diagnosed with cancer receive treatment they need in a timely manner.
“Because of this new plan, we have many things to do to ensure our needs are expressed. We want patients to get access to current treatments and access them faster so they have a better chance of survival,” she said.
Before a treatment is approved for funding and reimbursement, it has to undergo a health technology assessment. This assessment is carried out by the Danish Health and Medicines Authority (DMHA), an organisation that is similar to National Institute for Health and Clinical Excellence (NICE) in England and Northern Ireland.
“DMHA wants to make similar changes as NICE has made and we are worried about this as we don’t want to lose the treatments we already have,” she said.
Obtaining needed rehabilitation is also an issue confronting patients. Patients in Denmark are entitled to receive rehabilitation. However, findings from a survey undertaken in 2015 indicated that 89% of respondents were not informed about this right. Also in 2015, a rehabilitation centre for cancer patients was closed for financial reasons.
“Rehabilitation has been outsourced in the communities where they are starting from scratch. These programmes are not meeting the demands or needs of patients. Our goal is to improve its availability,” she said.
LyLe is drawing attention to the issue through Facebook, Twitter, and YouTube.
In spite of these issues, Rita is satisfied with the healthcare provided in Denmark.
“We have good treatments and patients seem to be satisfied but rehabilitation is a big problem. Support is needed for getting back to work and psychological issues,” she said.
Value of Social Media
LyLe has found using Facebook to be of great help in obtaining information about patient needs.
“We have 638 members in our Facebook group. We can ask the group questions or run surveys and the members are very responsive to our requests,” Rita said.
In addition to the large Facebook group, LyLe has smaller Facebook groups such as one just for patients with lymphoma.
“With the lymphoma Facebook group, we can ask specific questions that pertain to them so those who don’t have lymphoma don’t have to answer. This way we don’t have to search through the larger group to get the information we need,” she said.
The types of questions that Rita asks the lymphoma group concern how their day is going, if they have a job, and telling them what their rights are if they don’t have a job.
“The questions can also be about the types of lymphoma. Some of the new patients don’t know what type of lymphoma they have so we tell them they need to ask their doctor,” she said.
Rita also makes use of Facebook when she’s at conferences.
“When I’m at a conference, I can check back with the Facebook group and ask them what they think about a particular issue,” she said.
Twitter is another tool Rita uses.
“I’ll post things on Twitter when I’m at a conference although I post the same information on Facebook as Danes are not yet very good at using Twitter,” she said.
YouTube is another valuable tool for LyLe.
“On our YouTube channel, we’ve posted videos of our events that have also been translated into English and we have many patient stories. It’s all quite new and we did all this in 2015. We’re quite proud of what we’ve done,” she said.
Patient Support Groups
While Denmark may be a small country with a population of over 5.6 million people,1 LyLe has nine support groups spread throughout the country. These support groups are for all haematological diseases and are run by volunteers.
“The need isn’t there yet to have support groups for the different haematological diseases,” Rita said. The meetings take place once a month and last approximately two-and-a-half hours with between 12 and 15 people attending.
To support patients, Rita says it’s important to be where the patients are.
“We’re doing so many things. We’re in the media, on the internet, we collaborate with the Danish Cancer Association in a cancer forum. Whatever it takes to help patients,” Rita said.
Thank you, Rita, and your team at LyLe for all your efforts to help those with haematological diseases and for recognising the need to provide specific support for the different haematological diseases.
- http://denmark.dk/en/quick-facts/facts. Accessed March 31, 2016.
May 31, 2016