Focus Group on Survivorship

This is an invitation from Orla Hynes, whom many of you will know and love as the specialist Upper GI dietician at St Thomas' hospital. The aim is to consult patients, particularly those who have finished their hospital treatment in the last year or so, about how best to organise follow-up visits:

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Survivorship and Oesophagogastric cancer – Let us know your thoughts

We are looking for volunteers from London and surrounding areas to help us review how we look after patients who have had treatment for Oesophagogastric cancer in the last few years.

We would like to know what you think about the following:

-How you were/are being followed up - does this meet your needs and what improvements do you think could be made?

-What is important to you after treatment for your cancer?

-Are there other services you would like to access?

-Health and Well-being events – how do you think such an event would look like for you?

If you are interested in participating in this focus group, and helping us shape the follow up service, please contact:

Orla Hynes, Upper GI Surgery Dietitian at Guy’s and St. Thomas’ NHS Trust

[e-mail] or 020 7188 2010 or or 020 7188 4568

Date of Focus Group:Monday 23rd November 2015 (2pm-4.30pm)

Location: TBC (Guy’s and St. Thomas’ NHS Trust)

Travel expenses can be covered. Refreshments available.

[hunsdon]

Hi Alan I am a patient from Queens hospital Romford and I am almost 4 years post op from my treatment and operation from upper GI having had a Ivory Lewis is open to myself and others like me ????

[hilr]

Alas I live in Wales but I think this is a brill idea. Certainly for me over two years post-op life is not the same. I'm thrilled to have survived and grateful for that, but, eating is an ongoing challenge ( not getting it down my new iesophagus but the effect it had on me and my new digestive system) and I'd value ongoing advice re that. And other stuff like tiredness and fatigue-is it due to the cancer and treatment or just old age?

Hope the focus group is a success and as a result is replicated around the UK. There's a lot of stuff you just don't want to bother your surgeon with.

Hilary😀

[Hidden]

I think the decision was made to widen the exercise beyond patients from St Thomas' & Guy's so why not email Orla and ask? [e-mail]

[DaveChuter]

Thanks Alan,

I will contact Orla.

Kind regards,

Dave C

[strangetimes]

Hilr - perhaps you could contribute by email to Orla if you couldn't make it to London ? I'm sure she'd be interested .

Failing that couldn't you swing a long weekend in London ? Would be lovely to meet you ,

[brucemillar]

Hi

I tried the telephone ext several times yesterday, it just rang out. Called reception they tried. it still rang out. No voicemail ;ˆ( Happy to help. I am exactly 1 year post op in St Thomas's.

[Hidden]

Perhaps email may be better?

Alan

[strangetimes]

I emailed Orla today and got an automated receipt advising that she is on leave .

So probably why no reply to phone .

[Hidden]

I have edited the telephone numbers to read:

020 7188 2010 or 020 7188 4568