Videos Oxford Meeting 8 Sep 2017

CLL SUPPORT ASSOCIATION

8 September 2017

St Edmunds Hall
Queens Lane
Oxford, OX1 4AR

Programme

Oxford’s policy of “the patient knows best” – respecting the wishes of patients and - empowerment of CLL patients – was a recurring theme of the Conference.

There were 5 presentations videoed at the meeting.

Professor Anna Schuh: Associate Professor and Director for Molecular Diagnostics, University of Oxford; Consultant Haematologist. Professor Anna Schuh gives an update on CLL treatments and developments.

Julia Ford: Clinical Nurse Specialist (CNS) Introduces her role as a Clinical Nurse Specialist supporting patients and family members in the clinic.

CLLSA Trustee Brian Gardom introduces CLLSA on Heathunlocked and other useful sources of reliable information.

CLL patients, Sue Barclay and Pauline Stow (CLLSA trustee), talk about living with CLL and give some tips.

 

Thanks to the LeukaemiaCARE reps who attended the meeting.

 

What’s new in CLL? An introduction to CLL and a review of modern management.

 

Professor Anna Schuh is the Director of Molecular Diagnostics in the Department of Oncology and an honorary Consultant Haematologist at Oxford University Hospitals Trust. Dr Schuh is Chair of the UK CLL Forum.

 

Professor Anna Schuh’s talk covered: the crucial role of precision diagnostics; the range of treatments and what they specifically target; tips for patients on how to look after themselves. She stressed that CLL patients should get an annual flu vaccination.

 

She mentions:

The FLAIR study, a randomized phase 3 trial comparing ibrutinib and rituximab with FCR as a first treatment for CLL;

 

The 100,000 Genomes Project using big data sets of consenting patients’ genome data, linked to information on their medical condition and health records, to identify the best of existing treatment and prognostic information.

Here is the link for more information on the Genomes Projec

 

Dr Anna Schuh's presentation Oxford Sep 2017 see pptx at the end of the page

Time 1:21 talk 0:58: Q&A 0:23

 

Health Unlocked - Using Internet resources.

Brian Gardom CLLSA Trustee

Brian opened his talk, on using Health Unlocked and other recommended Internet resources, with an illustration of how informing yourself can benefit patients – live longer. You know what questions to ask clinicians; you manage your condition better; you tend to live longer.

 

Trustee Brian Gardom's presentation Sep 2017 see pptx at the end of the page

Some useful links to information for the UK 

Time 0:16:20

 

Support in the clinic and beyond”

Julia Ford Clinical Nurse Specialist (CNS)

Most “watch and wait” patients do not have access to a clinical nurse specialist. She talked about her role at Oxford and how a CNS is key to helping patients understand their condition and navigate the system. She demonstrated the value of having a friendly, reassuring face, or voice on the phone, to turn to for advice.

CNS Julia Ford's Presentation Oxford Sep 2017 see pptx at the end of the page

Time 0:27:10

 

Patient story 1

Sue Barclay - Patient

Sue Barclay gives her story of life with CLL. Sue took the initiative to change her consultants to a CLL specialist, having had a poor initial experience of care at her local clinic.

Time 0:10:20

 

Patient story 2

Pauline Stow - CLLSA Trustee and Patient

Pauline talks about her poor experience when diagnosed and her change of Consultant. Encourages all to keep copies of their blood tests etc and write down questions ahead of your appointments. Closed with encouragement to enjoy life as much as you can.

Time 0:08:21