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Oesophageal Cancer is the Sixth most common, Cancer in the UK 

  Late Diagnosis costs Lives

HCUK News & Events - Past & Present

 2018 - Patient and Public Involvement Opportunities
Please help Macmillan reach people affected by oesophageal cancer or Barrett’s Oesophagus by:
• sharing with your own patient involvement groups and networks
• in your newsletter
• with local cancer support groups
• sharing on social media – tweets from @BeckyDriscoll1

Your support is crucial in helping Macmillan reach people. Please don’t hesitate to contact Becky Driscoll with any questions. Thank you!

Alliance Diagnostic Hub in north east London – Patient Advisory Group members
UCLH Cancer Collaborative plans to open a new Diagnostic Hub for people living in north east London (Barking and Dagenham, City and Hackney, Havering, Newham, Redbridge, Tower Hamlets, Waltham Forest). The Hub will improve early diagnosis for patients with conditions that increase their risk of cancer, as well as monitoring patients with early stage cancer who do not need treatment right away.

We’re looking for people who would like to join a Patient Advisory Group to help us develop and launch the Hub. We are particularly looking for people with prostate, upper gastrointestinal or colorectal cancers, or who have a condition which increases the risk of cancer - liver cirrhosis, Barrett’s Oesophagus, Inflammatory Bowel Disease or polyps. We’d also welcome interest from people who are active members of community groups in north east London.

This is a great opportunity to co-design a person-centred approach to cancer diagnostic pathways at a dedicated centre. If you are interested, please read the Role Description, and then send a completed Expression of Interest form to uclh.getinvolvedwithcancer1@nhs.net , by the deadline of Monday 27 August 2018.

You can read more on our blog:
 https://www.uclh.nhs.uk/OurServices/ServiceA-Z/Cancer/Pages/Cancerblogsandupdates.aspx

The Role Description and Expression of Interest form can be found on this webpage:
http://www.uclh.nhs.uk/getinvolvedwithcancer

Patient Experience & User Involvement Steering Group – co-chair (paid role)
Our Steering Group is made up of people affected by cancer who are passionate about engaging communities and making an impact on the future of cancer care. It ensures that the views of people affected by cancer are represented at the highest level. The Steering Group oversees all of the work we do to improve cancer care and work collaboratively with local communities.

We are looking for a person affected by cancer to be our new co-chair. The co-chair receives payments for involvement, in recognition of the contribution of the role.

This role would suit someone who enjoys thinking strategically, is committed to representing the diverse population we serve, and working collaboratively with patients, communities and healthcare professionals.

We want to ensure that membership of this group reflects the diversity of the communities we serve. Therefore, we’re particularly keen to hear from people from black and minority ethnic communities, people of working age, people who live in east London, and people who were treated at Barts Health, BHRUT (Barking Havering and Redbridge Hospitals) North Middlesex, Princess Alexandra or Homerton Hospitals.

The Role Description and Expression of Interest form can be found on this webpage:
https://www.uclh.nhs.uk/OurServices/ServiceA-Z/Cancer/NCV/Pages/Gettinginvolvedwithcancer.aspx

Using routine health data to diagnose lung cancer earlier project – patient/carer reps
Outcomes for lung cancer in north east London are very poor, often because people are diagnosed at a late stage. We don’t fully understand the reasons why. UCLH Cancer Collaborative is embarking on this project with Cancer Research UK to look at data which is routinely collected by the NHS, and to see if it is possible to identify any trends which could help. The project will be looking for ‘actionable moments’ in the year before a person is diagnosed with lung cancer. We hope this will identify opportunities to diagnose and treat people earlier.

We are looking for two people to join the project group as patient/carer representatives. You don’t need to have experience of lung cancer specifically - we’d welcome people with experience of any kind of cancer for this project. What’s important is that you are interested in the potential of using data to improve health services, and are willing to learn.

If you are interested, please read the Role Description, and then send a completed Expression of Interest form to uclh.getinvolvedwithcancer1@nhs.net , by the deadline of Friday 17 August 2018.

The Role Description and Expression of Interest form can be found on this webpage:
http://www.uclh.nhs.uk/getinvolvedwithcancer

Quality of Life Pilot Steering Group – patient/carer rep
We are piloting a ground-breaking new tool for measuring quality of life for people affected by cancer. Currently, there is no measure in place to assess how well patients are supported after their cancer treatment. This tool will establish people’s quality of life and their needs, such as help at home or financial advice. We are looking for people affected by any cancer who would like to join the Steering Group overseeing and shaping this project.

If you are interested, please read the Role Description, and then send a completed Expression of Interest form to uclh.getinvolvedwithcancer1@nhs.net , by the deadline of Friday 17 August 2018.

The Role Description and Expression of Interest form can be found on this webpage:
http://www.uclh.nhs.uk/getinvolvedwithcancer


cancer52 logo

2018 - Influencing the next Cancer Strategy - Patient Survey
Friday Further to the members update sent in June, Cancer52 is currently conducting a piece of work to help inform our contribution to any new Cancer Strategy that will follow the existing one, which runs until 2020/2021. To help inform our contribution we are looking at all the issues facing people with rare and less common cancers and consider what needs to improve.

We have already asked our members for their views via a survey and were delighted that over a third of our membership responded, so thank you. We have also asked key stakeholders from the NHS, Government, think tanks and other charities for their views.

We now want to hear from people who are living with or have had a rare or less common cancer, as well as carers, about their experiences and how they think the experiences of future patients could be improved. It will help us to show the government and the people who run the NHS what people with a rare or less common cancer think needs to change.

We therefore ask members to share this short survey with your patients, by whatever means you communicate with that community, be it via email, a patient forum or social media.

The closing date for responding to the survey is 22 August.

2018 - HCUK East Anglia Event
Friday 14th September 2018 starting at 19:30 Westminster College Hall, Madingley Road,
Cambridge CB3 0AA

Event Includes: Interactive Exhibits on Early Detection of Cancer of the Oesophagus Endoscopic surgery demonstrations • Radiofrequency Ablation (RFA) to remove pre-cancer • Laboratory assays used for diagnosis • Video demonstrations of surgery • How Artificial Intelligence can help pathologists

This event is hosted by Professor Rebecca Fitzgerald and open to all. Whether you are a patient with Barrett’s Oesophagus, a friend or relative or a student interested in Science & Medicine. Please feel free to come along

This is a free event Recommended donation £12 for 1 / £20 for 2 / £5 for students
Refreshments will be provided on the night

Experts at this event: Dr Maria O’Donovan - Pathologist Marcel Gehrung – Artificial Intelligence Adrienn Blasko – Laboratory Scientist Amber Grantham – Laboratory Scientist Sujath Abbas – Laboratory Scientist – Dr Massi Di Pietro – Endoscopist Dale Waterhouse – Imaging expert Dr Wlad Januszewicz – Endoscopist Irene Debiram-Beecham – Research Nurse Mr Vijay Sujendran – Surgeon Ayesha Noorani – Surgeon

Please contact Teyene Omwango to book your free tickets via: ugirt@medschl.cam.ac.uk

2018 - Guts UK/Olympus Fellowship
Guts UK and Olympus are offering a Fellowship for endoscopy research on one or more of the 'Top 10 research priorities in Barrett's Oesophagus and Gastroesophageal Reflux Disease (GORD)’, published in Lancet Gastroenterol Hepatol. 2017 Nov;2(11):824-831. The Fellowship is for a maximum of £210,000 for salaries and consumables over 3 years. Application forms and guidance will be available on the website soon. The deadline for submissions is 8th October 2018.

For further information visit:
https://gutscharity.org.uk/research/grants-and-awards/olympus-guts-uk-fellowship/

2018 - HCUK supporting new position of Surgical Speciality Lead in oesophageal cancer
AUGIS – RCS Surgical Trials Initiative Inviting applications for Surgical Speciality Leads (SSLs)
For more information: http://www.augis.org/wp-content/uploads/2018/05/SSL-Advert-2018.pdf

2018 - HCUK Awareness Day
HCUK will be at the ASDA in Basingstoke on 6th and 9th June from 10 till 2pm.
Address: Brighton Way - Brighton Hill, Basingstoke, RG22 4DH
Come and meet us. Pick up some leaflets. Don’t ignore persistent heartburn!

2018 - NURTURE YOU - Special offer to fundraise for HCUK
This weekend Dr Jocelyn Jones of NurtureYou Limited, based in Winchester, is offering up to five £25 local yoga class vouchers in aid of HCUK. One is earmarked as her ‘fundraising for charity promise’ on a residential yoga weekend 4th – 6th May at Park Place Centre, just outside Wickham, Hampshire.

The vouchers are for three Friday afternoon NurtureYou Yoga classes in Twyford, 2.15-3.15pm or Compton, 4.30-5.30pm, both venues just south of Winchester and easily accessible from junction 11 of the M3. Mats, blocks, bricks are provided so all you will need is to wear some comfortable clothes suitable for light exercise.

These gentle yoga classes, value £30, must be taken between Fri May 11th and Fri July 20th 2018.

The vouchers are for one person taking three classes; but subject to space and with adequate notice, two or three people may attend together for one class. For further details,
please contact Jocelyn directly on 01962 422705 or email nurtureyouyoga@gmail.com
Click here to see our poster


2018 - Southampton Oesophageal Patient Support Group - Friday 27th April 2018
Click here for more details

2018 - Professor Rebecca Fitzgerald Trustee of HCUK outlining the latest developments in early detection of Oesophageal cancer she has been involved in at Cambridge University:
https://www.youtube.com/watch?v=1t5VW7DvByk

2018 - BBC Breakfast How to diagnose Oesophageal cancer –
it kills 21 people a day. Professor Rebecca Fitzgerald HCUK Trustee talks about her research at Cambridge University:
https://www.youtube.com/watch?v=Xng3spuTl-4

2018 - NCRI survey - Survey link: https://www.research.net/r/CancerQs2

Have your say on the future of research relevant to living with and beyond cancer
More and more people are living with the consequences of cancer and its treatment - what we have termed living with and beyond cancer. But there’s not enough research relevant to living with and beyond cancer. The National Cancer Research Institute is working on a project to change this. We have opened a new survey for patients, the people who look after or have looked after them, and the professionals who work with them, to identify the most important questions that research should address – this is the second survey in our project. Tell us which of these research questions are most important by completing our survey and help us to improve the lives of people affected by cancer. You do not need to have taken part in the previous survey. The survey will close on 12 April 2018. You can find out more about the project at www.ncri.org.uk/jla. Follow NCRI onTwitter @NCRI_partners

2018 - HCUK Trustee, Beryl Huntingdon, mentioned by Maria Miller in UK Parliament
http://www.basingstokegazette.co.uk/news

2018 - Cancer development: Origins in the oesophagus

by Lizhe Zhuang & Rebecca C. Fitzgerald

The cellular origins of a precancerous condition called Barrett's oesophagus have been unclear. Tracking and analysis of epithelial cells at the affected.... click to see the full article

2018 - Psychosocial Impact of Pre-malignant conditions (PIP) Study
Researchers at Queen’s University Belfast in the UK, are conducting the first large-scale survey of Barrett’s oesophagus patients and individuals with other precancerous conditions to investigate the impact of being diagnosed and living with a precancerous condition. We are particularly interested to know more about how you feel about your Barrett’s oesophagus and the impact, if any, Barrett’s oesophagus has had on your life since diagnosis. The findings of this study will be used to inform future healthcare service provision for individuals with precancers and will be published in a scientific peer reviewed journal.

To learn more about this study and to take part please click here: http://go.qub.ac.uk/QUBPIP1

All responses to the survey are anonymous (i.e. it will not be possible to identify you from any of the responses provided) and it should take no longer than 15-20 minutes to complete.

We look forward to hearing your opinions and appreciate your time and participation.
Thank you for helping to further our research


2017 - BEST3 Trial led by HCUK Trustee and Director Prof Rebecca Fitzgerald
In Spring 2017, Cambridge University will be launching the BEST3 Trial led by HCUK Trustee and Director Prof Rebecca Fitzgerald. The new Trial is designed to find out whether offering the CytospongeTM test to patients at GP surgeries can increase the number of diagnoses of oesophageal pre-cancer, Barrett’s oesophagus compared to current practice.

120 practices across England will be taking part in the Trial. Practices will b erandomly allocated to either providing the CytospongeTM or carrying on treating their patients as normal, allowing the research team to compare diagnosis rates across arms. It is hoped that these results will pave the way for the introduction of the CytospongeTM into NHS clinical pathways for people with acid reflux and heartburn symptoms.

The HCUK Patient and Public Involvement Group have been actively involved in advising the research team on aspects of research design, patient-facing wording and well-being issues.

Dad's devastating diagnosis when his heartburn turned into cancer of the oesophagus. Retired accountant John Gorham was shocked when his acid reflux developed into something more sinister
Click the link to see the full article http://www.mirror.co.uk/news/real-life-stories/dads-devastating-diagnosis-heartburn-turned-9963817

Why middle aged men should NEVER dismiss heartburn: Chas (of Chas & Dave) warns how his seemingly harmless symptoms turned out to be oesophageal cancer.
Click the link to see the full article http://www.dailymail.co.uk/health/article-4265802/Why-middle-aged-men-NEVER-just-dismiss-heartburn.html

Prof. Tim Underwood speaks at the NCRI meeting in Liverpool this month (November) on oesophageal cancer.

Cambridge scientists find 'sponge on a string' test could replace uncomfortable endoscopies The test can identify which people with Barrett’s oesophagus have a low risk of developing oesophageal cancer
Click the link to see the full article http://www.cambridge-news.co.uk/news/cambridge-news/cambridge-scientists-find-sponge-string-12186113

The Core-Derek Butler Fellowship
The Core - Derek Butler Three Year Fellowship For Research In The Sphere Of Upper Gastrointestinal Tract Diseases And Conditions. Please see below the link to the fellowship information and how to apply: http://corecharity.org.uk/research/research-awards-information/derek-butler-fellowship/

"The HCUK World Tour" is starting now
Please buy and wear one of our HCUK tops, or an HCUK cap, and take it with you around the world, or even in the UK, take a photograph of yourself, tell us where in the world you are, and send it to us and we will put it on our website

HCUK Online Shop

Email: HCUK World Tour Pictures
You will be helping us to raise awareness wherever you are

Other Events and Challenges to Raise Money
There are many other events and adventures you could do to raise money for us go to www.actionforcharity.co.uk this will give you an idea of what they are".

HCUK and NICE
HCUK are pleased to support the NICE Quality Standard (QS96) on Dyspepsia and gastro-oesophageal reflux disorder (GORD) published today (21.7.15).

The quality standard can be viewed by following this link: www.nice.org.uk

Core - the Digestive Disorders Foundation are putting on a FREE event in Sheffield on 23 September. More information can be found on their website: http://corecharity.org.uk/get-involved/events/science-of-digestion-sheffield-2016

HCUK Awareness Day December 2015
A full report of the day in London
 

Why Heartburn Cancer UK Exists


As a recognised and trusted authority in the field of Cancer of the Oesophagus, we know that with your help we can make significant inroads in the Prevention, Detection and Treatment of this disease by focussing on 5 key areas of action:  

EDUCATION

Education leads to a lasting change. We are working hard to influence public and social policy, to lobby politicians, to campaign for change, to promote greater collaboration amonsgt the medical profession, the public and the government. We are already in the process of developing a network of effective partnerships with businesses, the pharmaceutical industry, medical professionals and other like-minded groups. We intend to affect change and influence how this disease is perceived, detected, diagnosed and treated.

RESEARCH

Our aim is to significantly reduce incurable oesophageal cancer in the UK.

Our renowned medical professionals, all experts in the field of oesophageal cancer, will continue to play a key role in research and trials designed to reduce the incidence of this appalling disease.

AWARENESS

Early detection rates are vital to ensure a positive outcome. We are creating a communication network to facilitate greater awareness of the importance of diagnosing the disease early, identifying the symptoms associated with the disease and seeking medical help quickly. Oesophageal cancer affects everyone regardless of their race, gender or age.

SUPPORT

We will ensure consistent support is available to everyone affected by Barrett’s Oesophagus, regardless of who they are and where they live. Information and advice is available to all those affected by the disease and to the people who support them on our website or by telephone.

We need your help to bring this to the attention of your employees, friends & family or indeed anyone who might suffer from persistent heartburn!

You can make a difference perhaps you know someone who has suffered from persisitent heartburn, Barrett’s Oesophagus or Oesophageal Cancer. Perhaps you run an organisation and would like to help, why not make it your company’s corporate responsibility?

EVOLVE

We are not content with standing still, we are determined to develop and grow a sustainable UK charity which continually re-invests to maximise the impact of its resources.

Working with UK businesses and voluntary organisation’s, our outward facing collaborative approach will ensure we are the first place to come to for reliable up to date information about Heartburn, Barrett’s and Oesophageal Cancer.

HCUK - Information Centre


All you need to know about Heartburn, Barrett's Oesophagus, Oesopageal Cancer. If you need support we can offer advice, please contact us on the "Ask our Doctor a Question" form, or you can join one of our Local Support Groups. You can also buy Heartburn Cancer UK Clothing and other HCUK Merchandise to help Raise Awarness and of course we would very much welcome a Donation to keep the charity able to carry on offering free advise and Raising Awareness, Changing the Future and Saving Lives.

HCUK - USEFUL INFORMATION BOOKS TO DOWNLOAD