Lymphoma Association

The Lymphoma Association provides medical information and emotional support to lymphatic cancer patients, their families, friends and carers. It is the only specialist charity in the UK to do so.

Background and History

The charity began life in 1986 under the name of the Hodgkin’s Disease Association. At that time, information about lymphomas was limited and difficult to access, and so a group of people led by lymphoma patient, Tim Hilder, decided to set up an organization that provided vital information about lymphatic cancer to patients, their families and friends.

As well as producing this information, the group decided to set up the first-ever dedicated lymphoma helpline, which was staffed initially by them in their own homes. However, demand for the helpline grew rapidly – as did the Association’s staffing levels.

In 1994, it was agreed that the charity should change its name as many non-Hodgkin patients were not sure as to whether the Association’s services were available to them. After the AGM that year, the HAD became the ‘Hodgkin’s Disease and Lymphoma Association.’ A year later, the Vinca (periwinkle) was chosen as the Association’s logo because of the use of one of its derivatives as an ingredient in treatment for lymphoma. The use of this symbol continues to this day.

The charity changed its name for the final time in 1997, and became what it is now known as – the Lymphoma Association. It is still the only specialist UK charity that provides accurate medical information and support to lymphatic cancer patients, their families and friends.

Freephone Patient Helpline

The freephone patient Helpline (0808 808 5555) is staffed from Monday to Thursday (9am-6pm) and Friday (9am-5pm) by a group of Patient Support Officers

Free Literature

The Association produces a range of comprehensive literature for use as an information resource.The subjects covered range widely, from information about the disease itself to advice on how to cope with treatment and beyond. We currently produce more than 80 publications, all of which are available free of charge.

Buddy Scheme

The Association runs a Buddy Scheme. Individuals concerned about issues relating to lymphoma can discuss them with another person who has been through a similar experience. Our ‘Buddies’ are people who have had lymphoma themselves or have someone close to them who has had lymphoma. They are not trained counsellors but have volunteered to offer a listening ear.

This scheme, run by a senior member of the Helpline team, puts callers to the Helpline who request a Buddy in touch with someone who has experienced a similar situation. We appreciate that not everyone who calls the Helpline wants to speak with a Buddy, as many people will cope with the illness in their own way. For some, however, speaking to someone else who has already been through a similar experience can be a real source of support.

Many of our callers will never have met another person with lymphoma. By being put in touch with a Buddy, they can speak to or correspond by email with someone who has a real understanding of what they are going through.

The Buddies do not replace the Helpline service, but work alongside the Helpline team to provide the personal experience which callers may ask for.

Support Groups

Lymphoma Association Support Groups are made up of individuals who are, or have been, affected by lymphoma in some way; whether patient, family member, friend or carer.

The aim of a group is to provide mutual support for members in a form most appropriate for the needs of those members, as determined by them. Group meetings will probably include a variety of medical and non-medical speakers and social events. Some groups also participate in fundraising and awareness-raising for the Lymphoma Association.

The group is an integral part of the Association and receives assistance from the Helpline team, but is run by the members. Many groups are actively supported by a local health care professional; often a specialist nurse in oncology or haematology.

National Conference

Every year the charity holds a National Conference which details the latest developments in lymphoma treatment.

The conference, for which there is no charge, presents an ideal opportunity for patients to gain up to the minute information from a medical expert; as well as the opportunity to meet with other people affected by lymphoma.

The Lymphoma Association is running a project which establishes Lymphoma Association Clinical Nurse Specialist posts within NHS Haematology Units across the UK.

Since the project started in 2004, we have funded five Lymphoma Association Clinical Nurse Specialist posts; one in Manchester, one in Leeds, one in London, one in Cheltenham and one in Sheffield.

The predominant role of the nurses is to provide specialist clinical nurse practice, as well as giving high quality holistic care in the management of lymphoma patients.

The Lymphoma Association Clinical Nurse Specialists provide expertise and professional advice, as well as acting as a key resource to people diagnosed with lymphoma, and their families, throughout their journey. The nurses also offer counselling to patients, and their friends and relatives, at several stages of the disease, including:

At diagnosis When making treatment choices During treatments During follow up Fellowship scheme

Research

The Lymphoma Association is committed to supporting research that is relevant to the needs and aspirations of people living with lymphoma.

Results from a survey conducted for the Strategic Review 2007 show that:

Lymphoma Association members feel that funding research should be the second highest priority for the Association following patient support and information

Over 86% of members and nearly two-thirds of medical professionals feel the Lymphoma Association should have more involvement in research

The Lymphoma Association wishes to fund a Clinical Training Fellow, who, during the first two years of Fellowship, will receive specialist training in lymphoma management and clinical trials methodology. They will support the work of the Lymphoma Trials Office, part of the Cancer Research UK and University College London Cancer Trials Centre, by facilitating the management of ongoing trials and analysis and writing up of completed trials. In the second two years the Fellow will receive training in laboratory research relevant to the understanding and treatment of lymphoma.

Outcomes The aim of the Fellowship scheme is: To provide the clinical input to the Lymphoma Trials Office on a daily basis which is increasingly necessary for the maintenance and governance of the lymphoma trials portfolio

To produce scientists who have received unique research training that covers trial methodology, management, regulation, analysis and a basic training in laboratory science relevant to lymphoma. Following such training, it is anticipated that the Fellow will attain a higher degree (MD or PhD) and go on to become a leader in lymphoma research and treatment in the UK.

The charity recognises that training of medical research fellows is an essential investment for the future of lymphoma research in the UK, and is keen to provide support for scientists to undergo supervised training. Clinical trials provide the evidence on which to base treatment decisions.

Providing funding for large scale clinical trials is currently beyond the scope of the charity. However, the charity can fund vital research into improved understanding of the causes, prevention, treatment and cure for lymphomas through the sponsorship of this post.

External links

• Lymphoma Association
• Information on the lymphatic system
• Information on non-Hodgkin lymphoma
• Information on how lymphoma is classified
• Information on Hodgkin lymphoma
• Information on symptoms
• Information on treatments