Liverpool Members Conference 28 Jan 2019

Liverpool Members Conference 2019

The Conference Centre at Lace,

Croxteth Drive, Sefton Park, Liverpool, L17 1AA
28th January 2019
10.30am - 4.00pm

 

The 2019 Liverpool members conference was held this year at The Conference Centre at LACE, and the keynote speaker was

Professor Andrew Pettitt from the Royal Liverpool Hospital
 

Programme (morning)

10.30 Welcome and introduction.

10.40 Members’ CLL stories.

11.05 Clinical Trials experience; a patient
           and nurse specialist view.

11.40 Discussion Groups; sharing knowledge
           and experience.

12.30 Update on CLL Support Association

12.45 – 1.45  Lunch

Buffet lunch
Meet members
Talk to Trustees
Donation Envelopes

 

Programme (afternoon)

1.45 CLL Support Association; volunteering.

2.00 CLL; when to treat, how to treat and new developments.

3.00 Tea break

3.15 Question and answer session

3.45 Closing remarks and thanks

4.00 Close

 

 

The day was opened with a welcome and introduction by CLLSA trustee John Moore. 

The first talk of the day was given by Sue who talked about living with CLL and what helped her through including support from Penny Brohn UK

 

The second talk of the day was given by patient – nurse duo David and Jane. David talked about his expierience with cll, and how attending a CLLSA meeting helped him. How he was treated as a person not a patient when his care moved to Royal Liverpool University Hospital. When treatment was required the Flair trial was the option choosen. 

Jane Tinsley as a specialist/research nurse gave an insight to her involvement in David’s journey: checking blood tests, scans for normal cll ie no transformations, lots of background activity behind the scenes between appointments. Dialog between patient and team about when to actually start once treatment required.

Dave talked about his experience of his treatment. Lots of information available to help make a decision about treatment. Treatment resulted in energy returning. Experienced lots of bleeding – nails splitting – itchy skin – no further treatment needed. Followup in a few months time.

Jane from a nurses prespective then gave more detail about the Flair Trial - Front-line therapy in CLL: assessment of ibrutinib-containing regimes. 

 

There was then time to break off into discussion groups; sharing knowledge and experience.

The third talk of the day was given by Trustee Olga Janssen with an update on the CLLSA .

 

There was a break for lunch giving all those attending a chance to mingle and exchange thoughts about what was discuss in the morning and get answers they might have from other patients and carers as well as meet the CLLSA trustees. 

The afternoon session began with trustee Brian Gardom looking for volunteers to support the various work of the CLLSA under the following headings.

1: CLLSA Profile Raising Champions

2: Event and Regional Forum Support Champions

3: Lobbying and Media Support Champions

4: Help line Champions

5: Fund Raising Champions

6: Digital Champions

 

This was followed by the main talk by Professor Andrew Pettit

Heis a full Professor at the University of Liverpool, where he holds the Ronald Finn Chair of Experimental Medicine and heads up the Department of Molecular and Clinical Cancer Medicine. He is also an Honorary Consultant Haemato-Oncologist at the Royal Liverpool University Hospital, Chair of the National Cancer Research Institute Haematological Oncology Clinical Studies Group and a Medical Advisor for Leukaemia & Lymphoma Research, the Lymphoma Association, Leukaemia Care and the CLL Support Association. He was previously Chair of the UK CLL Forum and a member of the Cancer Research UK Clinical Trials and Awards Advisory Committee.

Professor Andrew Pettit started the talk by reminding us that all medics are human like us. That there is no solution for CLL that fits all. So to get the best results they need to work in a team with the patient at the centre to find the best treatment for each individual. 

The topics for the talk was proposed by John Moore to address the various levels of knowledge in the meeting. The talk covered the following headings:

  • What informs decisions about when to treat

  • What the treatment options are

  • What guides choice of treatment ( and pros and cons to consider)

  • First and second line treatment considerations 

  • Clinical trials 

  • New treatment develoments 

There should be something for everyone in this talk . 

 

After a tea break Professor Andrew Pettit answered questions from the meeting. 

 

The meeting was closed by John Moore