Other Sources of Information and Control

 Macmillan

Care and advice on both everyday financial and general needs and cancer specific help. Very good financial advice service.

Be Macmillan provide an extensive range of booklets available free in print or via on-line PDF, these cover a wide range of topics as well as disease information and available support

Macmillan Learn Zone provide on-line and in person training and courses to empower people to better live with their condition and support others.

Chronic lymphocytic leukaemia website section 

Understanding Chronic Lymphocytic Leukaemia booklet PDF  

Macmillan on-line community - has an active group of CLL/SLL & HCL patients & Carers and a very social space where support and information is shared on many general topics in discussion threads. The Macmillan website  - provides information on just about everything that may help when with living with a cancer.  

 

Lymphoma Association

Information and support for those with Lymphomas

Leukaemia and lymphoma what’s the difference

“A note on chronic lymphocytic leukaemia - There is a type of non-Hodgkin lymphoma called small lymphocytic lymphoma (SLL) which is considered to be the same disease as chronic lymphocytic leukaemia (CLL) but without the abnormal cells in the blood.

Because CLL and SLL are now considered to be one and the same condition (their treatment is the same too), CLL is classified as a non-Hodgkin lymphoma.”

A brief easy read Introduction to and Overview of CLL written by Professor Pettitt for the UK Lymphoma Association also a good place to start. Lymphoma Association in collaboration with Leukaemia care provide a UK network of local support groups for those affected by lympomas.

 

Leukaemia Care

Leukaemia CARE is a UK national blood cancer support charity. They are dedicated to ensuring that anyone affected by blood cancer receives the right information, advice and support.  Their site can be found Here. Leukaemia Care have a UK wide network of local support groups for people affected by blood cancers

 

Maggie's Centres

“Our Centres are here for anyone with any type of cancer and their families and friends, offering the practical, emotional and social support that people with cancer need”  The Maggie's website links you with the Maggie’s approach to cancer support , providing access to others and therapeutic courses through the fast expanding list of Maggie’s centres.  The Maggie’s on-line community has a CLL community forming part of the online haematology chat group.

 

Clinical trials

UK CLL clinical trials information leaflet..The article has been written for patients and their carers and assumes almost no prior medical knowledge  -

CLLSA Trials Page     

NCRI CLL Trials Portfolio Map 

UKCTG – UK Clinical Trials Gateway 

 

 Penny Brohn Cancer Care - Complimentary therapies  

Helping those diagnosed with cancer to Live Well using a whole person Approach. They offer a range of services, including residential and day courses, which are free of charge to adults with a cancer diagnosis and their supporters.  Here is their site  

 

The UK CLL Forum . 

The official site of the UK CLL Forum bridging the gap between Clinicians and scientists. 

 

 

Patient.co.uk   This website is a wealth of comprehensive information on all aspects of health and disease. It has a very clear text concerning CLL and is highly recommended to the newly diagnosed patient. 

NICE (National Institute for Clinical Excellence) is the independent organization responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health in England and Wales

Scottish Medicines Consortium (SMC)  provids guidance and approval of newly licensed drugs for NHS Scotland use. SMC analyses information supplied by the drug manufacturer on the health benefits of the drug and justification of its price.   

The National Cancer Research Network, here you will find lots of technical information about UK research and clinical trials.

Anthony Nolan Trust, the UK's largest stem cell and bone marrow register. This site is informative and useful. 

BCSH (British Committee for Standards in Haematology) guidelines and information on work in progress.

British Society for Haematology. It is the main haematology society in the United Kingdom.

Look Good Feel Better Programme is a free cancer support service for women living with cancer. Groups of up to ten patients are invited to attend a beauty workshop where they receive professional advice and guidance on how to cope with emotional and appearance-related side effects of their treatments.

Medic Alert An emergency medical information service providing identification bracelets/necklaces, and 24 hour accessible computerized medical files to medical personnel.