AWARE-IBD: Patient Oversight Committee

Patient engagement is at the heart of the AWARE-IBD project. As the lead organisation, Crohn's & Colitis UK bring insight and expertise, chairing the Patient Oversight Committee and recruiting people with Crohn's and Colitis to get involved throughout the project.

The aim of the Patient Oversight Committee (POC) is to guide and govern the AWARE-IBD project, in ensuring that it is keeping to the project objectives and plan, and is ultimately driven by delivering benefits to people with Crohn's and Colitis. POC is there to represent the views of patients across the UK and ensure that learning from this Sheffield-based project leads to better outcomes for people who live with Crohn’s and Colitis across the UK.

You can hear from each of the POC members below:

Nick Yates

I am a retired, 63 year-old, freelance Marketing Consultant, living in Llandudno, North East Wales.

I was diagnosed with Crohn's Disease in 2016. I am  currently on weekly, self-injected, Amgevita combined with daily Asacol and have had good control for 3 years.  I have other long-term chronic health conditions that, at times of acute flares, have interacted badly with my Crohn's condition. All need co-ordinated management across both Primary/Seconday Care and medical specialisms.

I am committed to supporting the work of Crohn's&ColitisUK.  My personal aim is to get more support for suffers of Crohn's & Colitis across the North Wales NHS, Betsi Cabwaladr University Health Board. I have assisted in the running of a first Patient Education workshop in North Wales and aspire to repeating this after 'lockdown'. I support the Clarity-IBD research project as a patient representative and have recently accepted an invitation from Value In Health, NHS Wales, to support their Digital Stories project. 

I am delighted to be nominated to the Aware-IBD, Patient Oversight Committee and will do my best to assist in and assure the success of this exciting IBD research project.

Nick Yates

Krupa Gupta

I was diagnosed with Crohn’s Disease in 2013.  Over the last eight years, I have had two surgeries, been on six different types of medication and had an untold number of tests.  It was only five years post diagnosis that I got a handle on how to work with the IBD services within my hospital to manage my Crohn’s.  This is why the AWARE-IBD project is so important - it could save years of optimised support that patients may be missing out on.

Crohn’s and Colitis UK has been a source of great support throughout my IBD journey. I have been a member of the Readers Panel for a few years and have been looking for ways to get more involved with the charity.  I am excited to be involved in this project, which puts patients front and centre and gives us the rare opportunity to shape IBD services to work for us, rather than the other way around.

In my spare time I enjoy yoga, reading, baking and I am attempting to grow some vegetables in my garden, although I don’t think I will stop going to the grocers just yet as I am not known for my green fingers!

Krupa Gupta

Dr Paul Westlake

I am a retired analytical chemist, with a professional interest in process improvement.  I was diagnosed with ulcerative colitis in 1986 and am currently doing well on infliximab, azathioprine and sulphasalazine.  Previously a chair of governors at a secondary school and borough councillor, I am secretary of the IBD patient panel at my hospital. I love to cook - especially Mediterranean and Asian food.

Dr Paul Westlake

Vicky Buckley

I'm Vicky Buckley, 46 and a mother of two daughters.

I have Ulcerative Colitis and was diagnosed about 10 years ago.  I have previously taken part in other research programmes on IBD and hope that my experience for the last 4 years as Lead Co-Ordinator for the South Yorkshire Crohn's & Colitis UK Network will bring some knowledge and skills to the committee.  This role is very rewarding and brings my great pleasure being able to support the charity to fundraise and raise awareness of Inflammatory Bowel Disease.

As a patient using the Sheffield Teaching Hospital services, it is not only important for me but for others to have the best possible service and care, this was why I applied to be on the committee and with a view for these improvements to be rolled out around the UK.

Vicky Buckley

I run corporate transformation & service improvement projects on behalf of a global management consultancy firm. My clients have included a variety of private & public sector organisations & for 5 years I worked in partnership with NHS England. 

While working in the corporate world I also launched a creative consultancy & have produced & directed various forms of art including music videos, visual graphics & web based platforms. 

I’m 29 & I was diagnosed with Crohn’s at the age of 14. I’ve been treated within two different NHS Trusts and had almost every medication available for the condition given to me.

I’m looking forward to offer an honest, fresh & innovative perspective to the oversight committee & I’m delighted to contribute to this incredibly important initiative.

Omar Khan