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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

Health & Beauty

Update on Implementation of Mental Health Action Plan

A progress update on the implementation of the Northern Ireland Mental Health Action Plan has been published.

The Action Plan was first published in May 2020 and contains 38 actions which will improve mental health services going forward. It also includes a plan on dealing with the mental health response to the Covid-19 crisis.

Commenting on the update, Health Minister Robin Swann said: “It is now 12 months since I published the Mental Health Action Plan and I felt it was important to provide an update on this work at this key juncture. 

“I am pleased to report substantial progress has been made against the actions contained in the Action Plan.  This is a considerable achievement, particularly given the additional, significant pressures related to Covid-19 and the challenges encountered by all those working to support people with mental ill health during this period.”

The progress update highlights key achievements including:

  • The creation of a Mental Health Champion;
  • Approval of the business case and securing of £4.7m funding for the development of a specialist perinatal mental health community service model;
  • The establishment of the CAMHS and Forensic Mental Health Managed Care Networks; and
  • The launch of a Mental Health Innovation Fund.

A number of reviews of key services were also commissioned as part of the Mental Health Action Plan including a review of: crisis services; transitions from CAMHS to Adult Mental Health Services; eating disorder services; personality disorder services; low secure in-patient services; and rehabilitation services.  The outworking of these reviews will help inform future strategic policy and service delivery.

Minister Swann continued: “The progress that has been made is due in no small part to the drive and dedication of so many people working tirelessly to improve services and to ensure that mental health is given the priority and profile it deserves.

“However, challenges remain and much still needs to be done. The Action Plan was always intended as a short term measure to kick start the reform of mental health services.”

One of the key actions set out in the Mental Health Action Plan was to develop a new, ten year Mental Health Strategy for Northern Ireland.

Concluding Minister Swann said: “The Strategy is my Department’s long term strategic plan to address the pressure on mental health inpatient beds, to meet the increased needs created by the pandemic, and to put mental health on an even footing with physical health.  I also hope it will bring us in line with mental health provision in other parts of the UK, and indeed, once fully implemented, ensure Northern Ireland has a world class mental health system to be proud of.”

The draft Mental Health Strategy 2021-31 was issued for public consultation in December 2020.  It is intended to publish the final Strategy this summer alongside a funding plan, which sets out the resource requirements to implement the Strategy.

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Health & Beauty

The Rainbow Project Welcome Introduction of Fair Project on Blood Donations

The Northern Ireland Blood Transfusion Service (NIBTS) will soon be starting to assess donor eligibility on a person-by-person basis for declared lifestyle choices; instead of applying across-the-board restrictions which have previously excluded potential donors. Using a donor’s individual experiences to determine whether that person is eligible to donate makes the process fairer for all donors and means more people will be able to give blood than ever before.

It also means all donors will be asked the same questions – regardless of gender or sexual orientation.

These changes to the way UK blood services assess the risk of transfusion transmitted infections incorporate the key recommendations of the 2020 FAIR (For the Assessment of Individualised Risk) Report. The recommendations were designed by epidemiology, sexual health and infectious disease experts to make sure we keep the blood supply safe while making blood donation fairer and more accessible to all. NIBTS are working in collaboration with Rainbow Project to ensure all those eligible to donate blood can do so safely.


The new FAIR risk assessment will be implemented in England, Scotland and Wales will come into effect on 14th June 2021, while in Northern Ireland the change won’t come into effect until September 2021.

Best Available Medical Evidence

Speaking about the change, Director of The Rainbow Project John O’Doherty said: “We welcome the implementation of the Fair Report and the new rules surrounding blood donations. These changes mean a large number of people who have never been able to donate blood will be eligible to do so. We would like to thank the Health Minister, Robin Swann, for ensuring that decisions related to blood donations are based wholly on the best available medical evidence and that policies are implemented on a UK wide basis.

“This is an issue we have been campaigning on for over 10 years including the implementation of an individualised risk assessment. During that time, we have been clear that donating blood is not a right, but a civic responsibility on all of us who are eligible to do so. The focus of The Rainbow Project will now turn to encouraging all those people who are now eligible to register as blood donors. Security and sustainability in our blood supply is a continued pressure across our health service – and while vocal and visible support for the NHS during the pandemic is to be welcomed – one of the most effective ways we can support our NHS is through donating blood.

“While we are disappointed that Northern Ireland will not be implementing the new assessment at the same time as the rest of the UK, we understand the reasons behind this and welcome the ongoing communication from the Northern Ireland Blood Transfusion Service and their commitment to ensuring staff are trained on the use of the new assessment process. The COVID 19 pandemic has had a huge impact on all aspects of our health service. Rather than spending the next 3 months condemning the Blood Transfusion Service, we will be directing our resources towards supporting the implementation of the new system and encouraging all those who are eligible to donate blood.

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