Leukaemia Patient-Support Group RHEIN-MAIN (LHRM), Germany

Until 1991, there was no information or support available for adult patients living in Germany with leukaemia or other haematological cancers.

“Because there was nothing, I founded the Leukaemia Patient-Support Group RHEIN-MAIN, LHRM. At the same time, I started an active search for bone marrow donors,” said Anita Waldmann. Anita is the founder and president of LHRM.

The impetus that drove Anita to do something for patients with haematological cancers was her son being diagnosed with acute lymphocytic leukaemia in 1990. LHRM helps all patients with any haematological cancer, not only those with leukaemia.

In addition to her work with LHRM, Anita is also involved with numerous other organisations including pharmaceutical advisory committees, the European Hematology Association (EHA) Patient Advocacy Committee, the German Society of Hematology and Oncology (DGHO), the European Medicines Agency (EMA) patient advocacy committee and, until 2014, she was involved in patient advisory committees for both the European Society of Medical Oncology (ESMO) and the European CanCer Organisation (ECCO).

“With EHA, I’m also part of the quality of life and symptoms working group in addition to patient advocacy. I’ve invited other Lymphoma Coalition members to be a part of this group as I think the larger the network the better the outcome for patients,” she said.

 

LHRM’s Objective

The main objective of LHRM is to ensure all patients, their families as well as the public are informed about haematological cancers, treatment options available and which hospitals specialise in treating haematological cancers.

Occasionally, patients living in a rural area may have challenges in receiving the best care.

“Patients living in the countryside tell us that sometimes it’s difficult to convince their doctor that they want to receive a different treatment and doctors won’t let patients know what treatments are available. With these doctors, it’s not part of their routine to think about making it a shared relationship as well as shared decision making,” she said.

To ensure patients receive all the help they can, LHRM holds patient and family information days and produces booklets that describe the cancers in easy-to-understand terms.

Helping Anita are two part-time workers who are on staff. In addition, there are between 12 and 20 volunteers who help out with support groups as well as organising patient and family information days.

“The volunteers will take materials to different places, whatever is needed in the Rhein-Main area. And they’ll also travel with me when meetings are taking place in other parts of Germany,” she said.

LHRM has a board of directors that helps with the management of LHRM and supports all of LHRM’s activities. Nine people including Anita are on the board.

Patient Support Groups

In addition to the patient and family information days and booklets, LHRM has six patient support groups. Two of the groups (Bingen and Rüsselsheim) are for all blood diseases. The other four are for specific blood cancers, namely: mantle cell lymphoma (MCL), multiple myeloma (MM), myelodysplastic syndrome (MDS) and Waldenström’s macroglobulinaemia (WM).

Most of the groups are organised by patients.

“I’m responsible for the Rüsselsheim group so can remain in close contact with the patients,” Anita said.

The needs of each patient support group determine how often each one meets. For example, the Rüsselsheim group meets on the first Tuesday of every month; others such as the MM group may meet three to four times a year. MCL and MW meet as needed and every second year each group meets for a German-wide patient and family forum: in 2014 it was MW, in 2015 MCL.

 

Patient and Family Information Days

One of the main events organised by LHRM are patient and family information days. These all-day sessions focus on different blood cancers including subtypes of lymphoma and usually take place at university hospitals.

“We do sessions on lymphoma subtypes because that is what patients ask for and they need to have time for questions,” Anita said.

Speakers at these all-day sessions include haematologists from the university hospital, doctors in private practice and allied health professionals.

Attendance can vary from 200 to 800 people.

“We don’t always know ahead of time how many will come although we do try to register attendees so we know how much seating will be needed,” she said.

For 2015, LHRM is planning to hold three to four patient and family information days.

 

Ensuring Successful Meetings

In 2014, LHRM organised a very successful two-day meeting that focused on WM. Two factors contributed to the success of this meeting. Firstly, patients were asked what kind of meeting they wanted and, secondly, what questions they wanted answered ahead of time. Attendees indicated that they wanted a two-day meeting that provided an opportunity to share experiences as well as learn in a relaxed setting. Approximately 70 patients and family members from Germany, Switzerland, Austria and France attended.

“On the first afternoon, four hours were spent talking about WM and the latest developments. Everything was explained in a patient-friendly way,” she said.

The afternoon session was followed by an evening get-together that enabled attendees to talk and share with each other their experiences with WM, a rarer from of lymphoma.

On the second day all the questions that had been submitted ahead of time were answered.

“More than 100 questions were sent in and they were all answered and this was so satisfying for the patients,” said Anita. Additional questions were posed during the question-and-answer session.

 

Challenges Facing Patients

While the standard of healthcare in Germany is generally good, some family physicians (FPs) do not refer patients with lymphoma early enough to a haematologist, according to Anita. To try and remedy this, FPs are invited to patient and family information days not only to speak but also to learn more about lymphoma.

“We want them to realise that patients want to have confidence in their FP so we invite them to these meetings so they can learn and be of more help to patients,” Anita said.

Another challenge confronting patients is the lack of awareness about the different subtypes of lymphoma.

“Doctors tell their patients they have non-Hodgkin lymphoma (NHL) rather than explaining that that they have a subtype of NHL. As well, doctors, including haematologists, don’t always use the correct terminology and will say that patients have cancer in their glands and not their nodes. I get so mad about this,” she said.

 

The Value of Blogging

In March 2014, LHRM started development of blog4blood which went live in October 2014.

“We started the blog because we thought it would remove some of the panic patients feel when they are diagnosed with a blood cancer or blood disorder and plus, it would give a feeling of belonging to a community,” said Anita.

The blog addresses all issues that patients may face, from laboratory tests to treatments to psychosocial support.

“The blog posts are about anything and everything a patient might come across in their journey,” said Anita.

Four regular bloggers who are patients contribute to the blog along with others who are one-time bloggers.

“The one-time bloggers ask us if they can blog and if we encourage them to do it in the hope that they will do it more frequently,” she said.

The blog is updated at least every 14 days but usually weekly. LHRM doesn’t have any numbers as to how many people have accessed the blog to date but hopes to have that information shortly.

 

Thank you Anita for all the work you and your team at LHRM do to help those with blood disorders and hematological cancers.

Anita is also a founding member of the Lymphoma Coalition and for that we will always be grateful. She has encouraged all of us continually over the years to be better at what we do to serve patients. Oftentimes, we refer to her as mama! She is one of the best!

July 28, 2015

 

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