A Peek at Lymphoma Association UK

Numerous ways to keep both those with lymphomas informed as well as the lymphoma community engaged are used by the Lymphoma Association in the UK. Heading up a team of seven, Pierre du Bois, Head of Information and Communications, is responsible for the communication needs of the association.

These include the website, social media, press, a quarterly magazine as well as an e-newsletter that goes out every two months, patient information and conferences, branding and advocacy. 

Benefits of Social Media

Pierre and his team make use of Twitter, Facebook and YouTube to keep in touch with the lymphoma community.

“We try to have a two-way conversation with our supporters but also use it to promote what we do or to support community fundraisers.” The team usually tweets five to 10 times a week and posts on Facebook about five times a week. Pierre and the team will use it to let people know about the charity and great things people do to support people affected by lymphoma.

The team will tweet about what’s going on in the news as it relates to lymphomas as well as advocacy campaigns such as those undertaken by the Cancer Campaigning Group, a coalition of national cancer-related charities, and Cancer 52, an alliance of more than 60 organisations that represents less common cancers.

The charity’s use of online video has really taken off in the past few years and the number of views of health information, patient experience and fundraising stories films in the association’s YouTube channel has increased eightfold in the past three years.

Assessing Use of Resources

Using Google analytics and other website tools, Pierre and his team keep tabs on what resources people use online. The association’s e-newsletter, which goes out at least once per month, has an average open rate of 40 per cent. The association also publishes a quarterly magazine, Lymphoma Matters.

“We carried out a comprehensive reader survey a while ago in which readers told us they were particularly interested in articles about the treatment for lymphoma, research, patient experiences and stories explaining lymphoma subtypes,” he said. The magazine is sent to 11,000 people every three months.

Finding Out About Events

To help patients and their caregivers find out what’s going on in their area, the Lymphoma Association has an interactive map on its website. By entering a postal code and the distance a person wishes to travel, the map provides information on events taking place in that area. Generally, these events are association support group meetings but also include fundraising activities, patient and carer conferences, and meetings being held by other independent haematology support groups. Keeping the interactive map current is what makes a feature like this a success.

While the association had to pay a web developer to set up this feature, it’s free to maintain as open source software, Dupral 7, is used. Dupral 7 is a content management system. Supporters who organise an event can upload it to the website but it will only become visible once it’s been approved by an association staff member. If you’d like to contact Pierre to find out more about this feature, please email him at This email address is being protected from spambots. You need JavaScript enabled to view it..

Buddy Scheme to Help Others

The Lymphoma Association’s buddy scheme provides an opportunity for people to talk to others affected by lymphoma over the phone or by email. The buddy scheme is a popular resource, with almost 150 buddies currently in the association’s database.

Anyone wanting to become a buddy is screened first and then undergoes training. Based on the needs of the patient, the association tries to make the appropriate match.

Education Sessions

Each year, the Lymphoma Association holds three one-day patient and carer conferences. One of the conferences is about lymphomas and the other two focus on blood cancers. The ones on blood cancers are hosted in association with Leukaemia CARE.

Topics that are usually included are new and future treatments, side effects and the emotional impact of lymphomas as, based on surveys, they are the ones attendees are most interested in. The conferences include breakout sessions as well as patient speakers.

Attendees at the conferences are primarily those who have had lymphoma for some time rather than newly diagnosed patients. To reach out to newly diagnosed patients, the association works closely with nurses and haematologists to encourage them to refer patients to the association for information and support. The association provides information that healthcare providers can give to patients and there is a drive on the part of the National Health Service to ensure patients receive good quality information. With the help of a grant from Google, the association receives free online advertising which helps promote the website as well as the services provided by the association. For more information on how to obtain a Google grant, visit www.google.co.uk/grants.

Getting Involved

The Lymphoma Association has a number of ways in which people can get involved and help raise awareness. One of them is the Great British Tea Break. Started in 2005, it is a fun way to raise money for the association. These events can be held anywhere such as a person’s home, school or college. Guests receive a cup of tea and a piece of cake or whatever the host thinks guests will enjoy and, in return, guests make a donation. To help set up a Great British Tea Break, hosts are provided with a fundraising pack that includes posters, leaflets, coin boxes and balloons. In 2013, 35 tea parties were held across the UK. To find out more, visit www.lymphomas.org.uk/gbtb.

Beacons of Hope Awards

The Lymphoma Association makes efforts to recognise the work of those who have helped people affected by lymphoma through its Beacons of Hope awards. Potential recipients, either groups or individuals, are nominated. Nominees can be a patient, friend, family member, caregiver, partner, fundraiser, health professional or a local hospital ward. To nominate someone, a form is completed which includes explaining why the nominee should receive the award. In 2013, 25 groups received a Beacons of Hope award. Awards are given to those who have raised awareness of lymphoma, those who have provided outstanding care and support, exceptional fundraising and anyone who has made a real difference in the lives of patients with lymphoma.

Some of the activities that led to an award in 2013 included a parachute jump undertaken by a 69-year-old woman which raised ₤5,500. Another award went to a teenager who wrote and sang a song to raise awareness about his friend with lymphoma. A video of the song was put on YouTube. Awards were given to nurses not only for excellent care but for also starting support groups. For more information about the Beacons of Hope awards, visit www.lymphomas.org.uk/boha.

Congratulations to the Lymphoma Association UK for their great work in lymphoma awareness and patient support!

 

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