Patient forum

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.

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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.

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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

• Discovery of the ALK gene

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

• Biopsies

• 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 Popat's closing remarks ‘blokes like me don't 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.

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Martina McGill from Macmillan Cancer Information Support Service then spoke of the services offered by her organisation, including:

• Helpline

• Face to face support

• Mobile units

• Fund raising

• Macmillan pharmacists

• Website

• Start-up grants

• PIPs

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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 goal)

• Structure

• Charitable status

• Communications - Facebook/Whatsapp/Messenger

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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 13th October

2. Deshani offered to check whether one of the Manchester Hilton Hotels 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 Facebook page

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Participants:

 

Patients:

Amanda Sands

Carolyn Crayon Radar Robbins

Debbie Gardener

Debra Montague

Doreen McGinley

Maureen Sawyer

Merete Baksh

Sally Hayton

 

Carers:

Debbie’s partner

Denise

Deshani Monik

Frank Talton

Graham Lavender

Rachel Sands

Rebecca Stebbings