Inaugural Meeting of ALK POSITIVE UK Group

Hilton Hotel Terminal4 Heathrow Saturday 7 th July 2018

Present Patients:

Amanda Sands

Carolyn Crayon Radar Robbins

Debbie Gardener

Debra Montague

Doreen McGinley

Maureen Sawyer

Merete Baksh

Sally Hayton


Debbie’s partner


Deshani Monik

Frank Talton

Graham Lavender

Rachel Sands

Rebecca Stebbings

The meeting was chaired by Debra Montague.

Debra welcomed those present and thanked them for making the effort to attend. She also thanked

Deshani for arranging the use of the Hilton Hotel at a preferential cost.

Each ALK+ patient introduced themselves and spoke a little about their lung cancer (LC) history and

their current status. As the meeting coincided with the football World Cup, each person present

signed a football.

Debra welcomed Dr Sanjay Popat, a UK ALK+ expert and consultant at the Royal Marsden Hospital.

Dr Popat said that he was delighted that the group had been set up and hoped that it would become

an influencer at a national level. His presentation covered

Explanation of the classification of LC

Development of the understanding of gene mutation

UK Group

Discovery of the ALK gene

Development of TKIs (1 st , 2 nd and 3 rd generations)

Approvals (USA, Europe,UK)

He identified the current issues as -

TKIs v chemo

Control of brain mets – access to SRS (few hospitals with technical expertise)

Access to drugs (who pays – comparison made between USA and UK)

How to cure, not just control

Dr Popat then dealt with a range of questions covering –

Benefits of bone-strengthening injections


Process of clinical trials

Distinction between medical ONCs (drug & trials orientated) and clinical ONCs (drug & radiation

orientated) and the need for ALK patients to be treated by medical ONCs

Shortage of ALK specialists

Limited use of immunotherapy after ALK inhibitors (but more work is being undertaken)

DVLA guidelines re brain mets

Private biopsy options – Dr Popat recommended Gardiant 360 £4k although findings may not be in

line with NHS approved treatments

Dr Popats closing remarks  ‘blokes like me dont make change/progress happen, its people like you…’

The 30 minutes allocated to Dr Popat stretched to 1 hour 15 minutes.

Dr Popat was thanked for his informative contribution.

Martina McGill from Macmillan Cancer Information Support Service then spoke of the services

offered by her organisation, including –

Help line

Face to face support

Mobile units

Fund raising

Macmillan pharmacists


Start-up grants


There was then a general discussion about the future of the group, including –

Purpose(s) of the Group

Frequency of meetings (at this point a shout went up as Rachel reported that England had scored a



Charitable status

Communications - Face Book/Whats App/Messenger

The meeting broke up into groups to discuss the purposes of the groups and it was agreed that these

fell under four broad headings

1. To liaise with relevant organisations, in particular Roy Castle Lung Cancer Foundation and

pharma’ to raise funds for the purposes of the UK ALK group

2. To provide an information resource for UK patients, in particular access to information about

latest developments and clinical trials

3. To identify and locate UK ALK patients and to offer support and guidance on the location of

UK ALK specialists and services

4. To influence decision makers, e.g. NICE, NHS, DVLA and raise awareness of ALK, particularly

amongst the medical profession so as to promote the best treatment for patients.

The Next Steps

1. It was agreed that the next meeting would be held in Manchester on 13 October

2. Deshani offered to check whether one of the Manchester Hiltons would be a suitable venue

for the meeting.

3. Graham to prepare a report on setting up a charity

4. Debra to set up a FB page