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Survivor’s story – how a fight with cancer turned Helen into a campaigner for those with Oesophageal and Stomach cancer

Pictured is: Helen Setterfield, chair, OG Cancer NI outside the Cancer Centre at the Belfast City Hospital ahead of the launch of the OG Cancer 2021 Catch It Early campaign which is encouraging people to look for the signs of oesophageal-gastric cancers. More info at https://ogcancerni.com Photo by Francine Montgomery / Excalibur Press For more information contact publicist Tina Calder, Excalibur Press, tina@excaliburpress.co.uk, 07305354209. Alternatively contact publicity assistant Hannah Chambers at publicity@excaliburpress.co.uk

In Northern Ireland there are more than 400 people diagnosed with oesophageal or gastric cancers every year, and as charity OG Cancer NI undertakes its annual awareness campaign to make sure people are aware of the symptoms Chair, Helen Setterfield has a personal reason behind her involvement.

The above figure was pre-Covid, and due to the pandemic, it is expected that there will be a drop in diagnoses, so Helen feels that people need to be aware of the symptoms.

“The current lockdowns and an urgent need to protect the health service has affected the number of people contacting their doctor,” she said. “However you should not hesitate to make the call if you experience persistent heartburn that doesn’t go away, trouble swallowing, regurgitation or hiccups that persist.”

Helen’s symptoms began when she had difficulty swallowing.

“Something was sticking down there and I knew it wasn’t right,” she explained. “I went to my GP and she sent me straight away for an endoscope. I went every year for the scope – I hated it – but I am so glad that I went.  After the regular scope in 2003 the doctor said “everything looks okay, make your appointment for next year”.  However, the Wednesday of the next week I got a call to say there was plenty to worry about. I had more scopes. I came home one evening and there was a message on the phone from my GP to say to phone the hospital on Monday morning.

Of course I knew right away, and I was in complete shock, so I phoned the ward 4A and the doctor I had been dealing with answered the phone…

He told me to come into the hospital right away and they would admit me. I had a week and a half of tests and had the operation two weeks later on December 18.

I was so glad I was being monitored with a scope every year as apparently my tumour was aggressive and I was lucky to be caught early. I am concerned as at present testing is only carried out every two years and there is some concern, due to the pressure on medics, that  in the future it could be every three years.

“Recent figures show that there has been a drop in the number of referrals to GPs of patients showing symptoms in 2020 compared to previous years so we want to make sure that we reverse that trend,” she said. “Early diagnosis leads to a much better chance of survival from this cancer which has only a 20% survival rate of five or more years, according to the NI Cancer Registry 2018.”

OG Cancer NI was founded in 2018 and provides telephone support to newly diagnosed patients, information stands in the hospital, wellbeing meetings providing peer to peer and professional advice and support and funding for local research or equipment projects which will improve patient wellbeing and treatment.

“We work with GPs to raise awareness so when patients present with the symptoms of Oesophageal and Gastric cancers they take the appropriate action,” said Helen. “The current lockdowns and urgent need to protect the health service has affected the number of people contacting their doctors, but if you are experiencing symptoms you must not hesitate, and if needs be you should be persistent.

“Consult your doctor if you experience persistent or recurring Indigestion, food sticking in your throat, difficulty swallowing, heartburn or acid reflux, hiccups that won’t go away, or unexplained weight loss.”

The OG Cancer NI ‘Catch It Early’ campaign, funded by the National Lottery Community Fund and OG Cancer, strives not only to increase the awareness of the signs of oesophago-gastric cancers in the public but also throughout the medical and caring professions.

Testing for Barrett’s oesophagus, which can be a precursor to oesophageal cancer, has stopped at present and those in the Cancer Services are very worried, said Helen.

“Part of the issue is that If somebody goes to see the doctor there’s no screening for these cancers at the moment,” she explained. “The National Screening Committee which advises the UK government  looked at this last year and decided there was no effective way of screening for oesophageal and gastric cancer except for the invasive scopes. In terms of this cancer, there’s no screening as there is for breast cancer and other cancers.”

Work is currently underway to address this issue, but it has also been hit with problems of Covid-19.

“There are researchers at Queen’s University who are carrying out research at the minute,” said Helen. “They are investigating blood samples and trying to identify markers in the blood.  OG Cancer NI provided them with a specialist freezer. However, the freezer that we gave them is being used to store vaccines at the minute, so the blood samples were removed to another location’

Helen also believes that there is an urgent need for a new diagnostic tool to be introduced in Northern Ireland . It is called Cytosponge and tests for Barrett’s oesophagus.

“It’s a cheap and simple test that can be done in a GP surgery instead of a referral to hospital for an endoscopy,” Helen explained. “It isn’t in use in Northern Ireland yet. They use it in Canada and it’s very successful. Scotland is now using it and some areas of England used it successfully during the pandemic. We hope that it can be introduced in N.I. as soon as possible.”

When Helen had her surgery she had a lengthy period of recovery, but she has a message.

“Eventually I returned to work full time. I completed the Macmillan Cancer Support Certificate and want to help others who find themselves in a similar position. I have a good life.  I enjoy playing golf, albeit badly, holidays, family and friends.

“There is life after Oesophageal Cancer.”

For further information go to ogcancerni.com, follow #OGCancerNI, call 07568 157450 or make an appointment to see your local GP today.

ENDS

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Mental Health Champion of Northern Ireland Appointed

1. Siobhan O’Neill is a Professor of Mental Health Sciences at Ulster University, and the Mental Health Champion for Northern Ireland. Her research programmes focus on trauma, mental illness and suicidal behaviour in Northern Ireland, and the transgenerational transmission of trauma.

Following a recent external recruitment process, Health Minister Robin Swann has appointed Professor Siobhan O’Neill as the Mental Health Champion for Northern Ireland.

Professor O’Neill is the current Interim Mental Health Champion and Professor of Mental Health Sciences at Ulster University. She is one of Northern Ireland’s leading experts in the field of mental health, known for her active and passionate involvement in suicide prevention. 

Making the announcement Minister Swann said: “The mental health and wellbeing of our population is a priority which has been further highlighted during the COVID-19 pandemic.  Appointing a Mental Health Champion is another key step to ensuring those suffering from mental ill health will have access to the services they need, when they need them.  I am delighted that Professor O’Neill has agreed to continue her crucial work that she started as Interim Mental Health Champion.”

During her time as Interim Mental Health Champion, Professor O’Neill has been an advocate for mental health at both public and governmental levels.  She led a mental health and wellness campaign throughout the winter pandemic restrictions and has been an advisor to the Department of Health and Executive colleagues on the mental health impact of the COVID-19 pandemic.

The Minister continued: “I recently announced a new 10-year Mental Health Strategy setting out the future strategic direction of mental health services in Northern Ireland.  I want to break down barriers and put individuals and their needs at the centre of what we do.  The appointment of a long term Mental Health Champion underpins the provision of a voice for the most vulnerable in our society and across government now and in the future.”

Professor O’Neill said: “I am delighted to continue as the Mental Health Champion for Northern Ireland, so that the voices of those who struggle with their mental health are heard, and that their voices influence policy and practice to ensure that good mental health and wellbeing is a priority across Government Departments. 

“The 10-year Mental Health Strategy is a positive step in improving mental health services and demonstrates why mental health must be a key priority for Northern Ireland. I look forward to continuing my work with Minister Swann, the Executive, those with lived experience of mental ill health and those who provide services on the ground, to ensure that the actions laid out in the strategy are delivered to help Northern Ireland to flourish as we recover from the current pandemic and into the future.”

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Grants for Groups Supporting Carers Announced

Health Minister Robin Swann has announced the allocation of the first tranche of grants to organisations providing vital support for carers. 

Almost £600,000 of the £4.4m Support for Carers Fund has been awarded to groups across Northern Ireland. It’s part of a £24m package of funding made available in response to the COVID-19 pandemic to support carers, cancer charities and mental health organisations.

Following assessment, 16 applications have been successful in securing funding which will see a total allocation of £594,921 from this round of funding. The activities being funded include provision of practical support, wellbeing events, respite, advocacy support and work to address isolation and loneliness. Projects cover both adult and young carers.

The Health Minister said: “I want to pay tribute to the many thousands of people in Northern Ireland who help to look after a family member or friend without financial reward.  Put simply, the health service could not cope without them, particularly during the COVID-19 pandemic when their role was absolutely vital.

“When I launched the Support for Carers Fund earlier this year my focus was to support projects delivering on the ground to make a real difference to individual carers. I have therefore been pleased to hear of some of the practical supports that the Fund will allow through this first set of awards.

“The awards that have been confirmed are only the first tranche of the overall funding pot of more than £4m. This represents a very significant financial investment and I look forward to seeing how it brings about a sustained improvement in the lives and experiences of individual carers in the coming months and years.”

The Fund is being administered and managed by the Community Foundation NI on behalf of the Department and aims to provide grant funding to organisations with charitable status that can deliver outcomes to improve the lives and experiences of carers.

Community Foundation Chief Executive, Roisin Woods said: “The Foundation is thrilled to be granting these monies to projects helping in the care sector.  Like the Cancer Charities Support Fund, there was a massive response to the funding, which will provide almost over £600,000 to organisations supporting care groups locally.  The funds will be available for three years, making an impact over a longer period of time, which we know will create a meaningful difference in the lives of many. A second round of grants to support carers will open in the New Year.

“We realise some projects will be disappointed today, and we would encourage them to bid if they can for the new round of funding and to really think about how they undertake their applications to ensure they meet the criteria for funding.”

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