UK Sources of Information

Sources of Information

There is a lot of information listed below providing access to many of the key reliable UK resources to aid CLL/SLL patients.  Read as much or as little as you want or need. 

 

CLLSA is not responsible for information on other internet sites. As with any site, including ours, be a discerning reader- think about what you read from your own health and financial point of view. and check date of publication, admin are in the process of updating this information.

Information recommended for newcomers is a good place to start the journey.

 

 CLLSA Information Recommended for Newcomers

If you register with the CLLSA you will be forwarded an information pack that includes several of the following patient information booklets.

People can register on the site and we will send you, via email, an electronic  patient information pack. Register Here:   We can only post the information pack to those without an email who are living in the UK.

1) A good overview of CLL can be found on the Here.

2 ) A guide to help understand your blood results can be found Here. 

3)  This Start Here section gives access to a lot of useful information. This will allow you to begin to understand the new language and start to understand what your diagnosis means.  

4) It is important that you keep uptodate with Vaccinations.

5) Watch and Wait

 

www.nhs.uk

Is the on-line information centre for the NHS. A very useful website with links to information about all healthcare matters , from information about conditions and treatments, and therapies  to support services and information to aid you to navigate the system .

The website provides a good CLL section to start. Has good links with the CLLSA and on-line community.

Chronic lymphocytic leukaemia overview

Chronic lymphocytic leukaemia - Causes

Chronic lymphocytic leukaemia - Diagnosis 

Chronic lymphocytic leukaemia - Treatment 

Chronic lymphocytic leukaemia - Complications 

Treatments pages in all UK CLL information literature will require updating due to new treatments for some groups having been recently approved for NHS use 2014/15 (edit note  2015)

 

UK Based on-line CLL communities 

CLL Support Association at Heathunlocked – CLLSA at HU 

is our active on-line community of 2600+ members living with CLL. Connect with others, share knowledge and experiences to help live with the challenges of CLL. Ask a question, write or read a blog, share news and views or participate in a poll, help us to develop the community.

Macmillian  CLL,SLL,HCL 

CLL/SLL & HCL patients & Carers  group (no longer very active) The Macmillan website  - provides information on just about everything that may help when with living with a cancer.

UK Chronic Lymphocytic Leukaemia Forum 

Although appearing not very active provides much support and knowledge from a group who will respond and join in when you post. 

 

UK local support groups and buddy schemes

Leukaemia Care network of local haematological cancer support groups across the UK, including a recently established CLL specific support group in Manchester. A buddy scheme is also available.Find a support group near you.

Lymphoma Association network of local support groups across the UK, although not CLL/SLL specific these groups are often populated by CLL/SLL patients and carers and those living with chronic lymphomas. A buddy scheme is also availble. use the search tool to find a group near you.

Macmillan local support groups across the country use the search tool to locate a haematological support group near you.

 

UK sources of CLL Information

Be a discerning reader be aware that blogs become dated and some information sources may require updating. 

Below are a few UK links to current and reliable information written in patient friendly and understandable language.

 

Bloodwise formerly Leukaemia & Lymphoma Research (LLR)

 The website is a good place to start your learning, where very recently updated information is available in booklets, Audio and videos and an extensive website written in an understandable manner.

Bloodwise 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 informarion and available support. see Blood Cancer Information Booklets

Of particular interest: Patient & carer information CLL booklet (2014 UK) a good introduction overview  to CLL written in understandable language to help UK patients and carers understand CLL, treatment and care and accessing support resources.

Also 

          Newly Diagnosed with a Blood Cancer (pdf)

Watch and Wait Monitoring While Treatment Is Not Necessary

Eat Well with neutropenia

 

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 inperson 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 & 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.

It can be difficult to get travel insurance if you have cancer, or if you've had cancer before. Some good advice can be found here, Travel Insurance.

 

Lymphoma Association

Information and support for those with Lymphomas

Leukaemia and lymphoma what’s the difference

Low Grade non-Hodgkin Lymphoma 

“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 lymphomas/

 

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.

 

NEW 2015 booklets availble as PDF downloads Step by Step on Lymphocytic Leukaemia (2015)  and  Step by Step on Watch & Wait

 

Cancer Research UK

The information website from Cancer Research UK. This website is  very clear and easy to understand without being too technical. An extensive CLL specific section providing a wide range of CLL information and resources  and draws on the knowledge of the research organisation to support with data and trials information.   CLL here.

 

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  

 

Healthtalkonline

Uses video snippets from CLL patients and medics to support information you can listen to others and

   - Their reactions to the diagnosis        

  - Other people’s reactions to your diagnosis     

  - Watch and wait 

  - Living with the symptoms of CLL

  

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 

 

 Complimentary therapies page 

 There are many reasons why people choose to use complementary therapies. Some people find they help them cope with the stresses caused by cancer and its treatments. Many therapies are relaxing, and may lift your spirits when you aren’t feeling your best

 Complementary therapies may help you:

  • feel better and improve your quality of life
  • feel less stressed, tense and anxious 
  • sleep better
  • with some of your cancer symptoms
  • with some of the side effects of your cancer treatment
  • feel more in control.

  Go to complimentary therapies page  

 

 BLOG Professor Hamblin 1943-2012

The late Professor Hamblin wrote extensively about CLL on his blog often translating and reviewing developments for us amongst his own random thoughts about literature, poetry, politics, religion, cricket and music. His blog can be found Here.

  

The UK CLL Forum . 

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

 

UK TELEPHONE HELPLINES

Macmillan help line                0808 808 00 00    Mon to Fri                              

The Lymphoma Association:  0808 808 5555     Mon to Fri

Leukaemia Care Line :            0808 801 0444     24 hour

CLL Support Association:       0800 977 4396      Answer service

Other support lines

 

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 organisation 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)  

provides 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 computerised medical files to medical personnel.

 

Dictionaries and Glossaries 

 

Can you understand that Symbol, name, acronym, synonym, code, medical term????

 

  GLOSSARY OF TERMS 

  B C D E F G H I J K L M N O P Q R S T U V W X Y Z

 

Patient.co.uk

The dictionary page on patient.co.uk gives you instant access to a search facility that accesses some of the directories and glossaries listed below:  

 

Online Medical Dictionary 

Now exclusively licensed by mondofacto, the Online Medical Dictionary is a searchable dictionary of medical and scientific terms.

 

Medical Abbreviations - from MediLexicon 

Use to search for the meaning of medical terms and abbreviations such as tds, bd, prn, etc. Also has a medical dictionary.

 

Medical Abbreviations 

A list of abbreviations commonly used in medical notes written by doctors. Aims to make reading your own notes more comprehensible. A service from the Patient Partnership Group of the Royal College of General Practitioners.

 

Glossary of Health, Social Care and Information Technology

Explains terms used by health and social care agencies.

 

Glossary of Health & Social Services Acronyms  

Useful site for understanding all those confusing abbreviations.