CLL Support

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Subsequently, CLL Support was established as an official charity in August 2005.

CLL Support is a UK patient-led charity supporting & empowering Chronic Lymphocytic Leukaemia (CLL) & Small Lymphocytic Leukaemia (SLL) patients, their families & supporters through education & access to reliable, relevant, & current information. CLL Support was formed in 2004 when a group of CLL patients and their carers decided that more could be done to support CLL treatment and research and to help patients by establishing a UK support group. Since its inception the association has relied heavily on its trustees and medical advisers and they all have made their own unique contribution to the development and growth of the association. In 2015 the association has over 1,300 members, making it one of the biggest patient-led charities in the UK. The purpose of CLL Support is to provide support to CLL patients and their carers by keeping them informed of recent and relevant developments in CLL treatment and research and to provide opportunities for awareness raising and mutual support through regular meetings. Our aim is to empower people affected by CLL and related conditions by supporting learning and self-development using reliable and current websites, literature, and links to current sources of information, supported by our own website and frequent regional members meetings with expert consultant speakers. We also have well-established links with national leukaemia and lymphoma charities and other international CLL organisations, all accessible from the main web site at www.cllsupport.ork.uk and from CLL Support on Heathunlocked at
https://healthunlocked.com/cllsupport

09/10/2026

In December last year we shared the extremely sad news of Lelia Duley's passing. Lelia, an Associate of CLL Support, was passionate about the patient voice being heard and she helped in so many ways to promote awareness of CLL and champion meanigful patient involvement in CLL research.

Yesterday, Lelia's outstanding contributions were recognised by the presentation of the inaugural Lelia Duley Award. We were privileged that Clive, Lelia's husband, attended to present the award.

Established jointly by CLL Support and the UK CLL Forum, the Lelia Duley Award honours Lelia's legacy by recognising those who continue her work: placing patients at the heart of research, ensuring their perspectives shape what is studied and how it is delivered, and making knowledge accessible to all.

The judging panel, comprising of 2 patients and 2 clinicians, received 5 applications of outstanding quality from researchers all across the country. They selected Dr Helen Parry and the IMPROVE trial as the winner.

Patient and public involvement and engagement (PPIE) was embedded in IMPROVE from the very beginning when seeking funding, through to sharing the results of the trial. It is hoped the role of the IMPROVE Patient Advisory Group will serve as an outstanding example to others.

In celebrating these contributions, we hope to inspire a culture where patient partnership is fundamental to high-quality research - just as Lelia believed it should be.

Many congratulations to all involved with the IMPROVE trial 👏👏👏 https://improve.octru.ox.ac.uk/welcome-to-improve

24/09/2026

Our Southampton Conference is underway today with our guest speakers Prof. Francesco Forconi, Prof. Jon Strefford , Bryony Tyrell, Helen Parker and Ben Sale. The event is being recorded and will be available to view on our website in the coming weeks. Thanks also to our patient speakers giving their own unique experiences of life with CLL.

23/09/2026

Following our post 2 days ago, this image shows five more themes from partners, friends and family members who shared what they would say to someone supporting a person newly diagnosed with CLL/SLL

You don't have to navigate CLL/SLL alone - learn, ask questions, talk, seek support and take things one step at a time.

Thank you to everyone who shared their experience and advice for the benefit of others.

❤️‍🩹

22/09/2026

Across the comments in our recent patient survey, people repeatedly told us how important good information, specialist knowledge and connection with others living with CLL/SLL can be.

Many people described having to research their condition themselves, particularly after diagnosis. Others spoke about difficulties getting answers, understanding blood results, accessing vaccinations or getting consistent follow-up.

At the same time, we heard just how much people value having somewhere to turn.

We also heard an important message from people living with SLL - that they want to feel seen, represented and supported in their own right.

Thank you to everyone who took the time to tell us what your experience has been like.

We’re listening - and your experiences will help shape our future services.

❤️‍🩹

21/09/2026

In our recent survey we asked partners, friends and family members of people living with CLL/SLL:

“What one piece of advice would you give to someone supporting a person who has just been diagnosed?”

The answers were honest, practical and reassuring. The image shows five themes that came through.

Thank you to everyone who shared their experience and advice for the benefit of others.

Look out for Part 2, where we share five more pieces of advice from partners of people living with CLL/SLL.

❤️‍🩹

20/09/2026

One of the clearest messages from comments in our recent patient survey was that living with CLL/
SLL can have a profound impact that isn’t always visible to other people.

The image shows what people told us about.

These experiences remind us that CLL/SLL is different for everyone “there’s no patient like me” and that its impact cannot always be measured by blood results, treatment status or how someone looks.

We are grateful to everyone who shared so honestly with us.

Your experiences help us understand what living with CLL/SLL really means - beyond the numbers, and will help shape our future services.

Watch out for more posts over the next few days sharing what you told us.

❤️‍🩹

19/09/2026

📣 Great news - CLL Support is now PIF TICK re-certified

The PIF TICK is the only independently assessed trust mark for health information

Holding the PIF TICK means our health information continues to be:

Evidence-based
Up-to-date
Easy to use and understand

👏👏

18/09/2026

Dr Nicolas Martinez-Calle, Consultant Haematologist at Nottingham City Hospital, will be raising awareness of CLL Support at the Nottingham Half Marathon at the end of September. If you're in the area, please do cheer him on. To find out more about CLL Support go to: www.cllsupport.org.uk

14/09/2026

Listen to our Chair, Peter Allen who was interviewed by BBC Radio Leeds on recently You can access the interview using this link and logging in to your BBC Sounds account

https://www.bbc.co.uk/sounds/play/m0031lnp

Peter's interview starts 1 hour and 06 minutes in to the show and you can hear all about his CLL diagnosis and how treatments have changed

11/09/2026

Listen to trustee, Hilary Linsday who was interviewed by BBC Radio Northampton recently. You can access the interview using this link and logging in to your BBC Sounds account
https://www.bbc.co.uk/sounds/play/m0030wd0

Hilary's interview starts 1 hour and 11 minutes in to the show and you can hear all about her CLL diagnosis and how CLL Support can help.

Address

CLL Support, C/o Suite 112, The Citadel Bath Road, Chippenham
Chippenham
SN152AB

Telephone

0800 977 4396

Website

http://www.cllsupport.org.uk/

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