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CLDF back in Belfast

                                                                  

 

Just over a year after The Children’s Liver Disease Foundation made their first visit to Belfast, they are on their way back.

Last September a record number of children and family members went 10-pin bowling at the Odyssey Arena.  This year CLDF have booked Streetwise Circus to present a programme of circus skills.  It should be a very lively and entertaining few hours for everyone who comes along.

This all takes place on Saturday 1st November – from 11. 30 a.m. to 2. 30 p.m. – at the Morton Community Centre in Belfast  (off the Lisburn Road)

As last year, CLDF staff will be available to chat to parents and children about how they are coping.

RVH LSG are delighted to be helping with the preparation and delivery of the event.  More details will be posted as the weeks go by.

In the meantime – if a child in your family has been in any way affected by liver disease, please put the date in your diary.

 

CLDF back in Belfast2020-08-04T11:17:48+01:00

Thoughts on Organ Donation by pupils from Bangor Academy

Bangor Grammar Crest

Bangor Academy Crest

On 6 March an assembly on organ donation was held for 3rd Year pupils of Bangor Academy.  Roughly 200 pupils heard stories from people who knew from experience what organ donation entailed – as carers, recipients or donors.

I told the story of my son’s life-saving transplant following acute liver failure. 

Ruth and Ronnie White, respectively a kidney recipient and kidney donor, talked about their part in the U.K.’s first series of  synchronised kidney transplants that involved 3 donors.

And Mary Sweeney talked about her decision to donate her son’s organs following his death in a car crash.

We were made very welcome in the school, as always (it was our third visit).  The pupils could not have been more receptive.  Below are reflections from a few of them on the stories they heard.

 Today we went to an assembly about organ donors.  There was a man who talked about his son being very ill and he had to go on several planes to get to a decent hospital. His son had to put on a cap to cover his pale face so that the woman at the airport would let him board the plane.  He made it to the hospital and got the transplant that he needed.  He lived!

The other story was quite sad.  A mother told us about her son.  He had been out in his car and was involved in an accident.  He was rushed to hospital and passed away shortly afterwards.  Her children had to go for counselling and she and her husband were very upset.

Her son’s organs got donated to people in need and they lived. The woman said she was happy he was an organ donor because in a way he lives on.  I can’t imagine losing a close family member. The pain would be so hard.

I asked my mum about becoming an organ donor.  She said it was a good thing but she didn’t really like the idea of organs being taken out of her children when they have died.  My dad wants to be an organ donor because he thinks it is a great idea and so do I.

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 We went to a special assembly about organ transplants.  Two men and two women came in and talked to us about how organ transplants had saved their own lives, a family member’s life or the lives of people they don’t know.

One of the women talked about how she needed a kidney transplant.  She explained to us that the doctor came into the ward and said to her that there was a patient in England who needed a kidney.  The test showed that the kidney was the same type as her husband’s. So her husband’s kidney went to this person and another kidney from England went to her.  It saved her life.

There was another man who talked to us about his son and him going to Africa.  The son fell ill and didn’t feel well on the day they were due home.  They managed to get him onto the plane by pushing a baseball cap over his face.  When they got home he was rushed straight to hospital.  Later they found out that he needed a liver transplant.  He got a transplant the next day and is now doing well.

A woman told us a story about her son.  Shortly after he had celebrated his 18th Birthday, he was involved in a serious car accident in Portavogie.  The road was slightly slippery that morning and he just lost control.  The lady’s husband was diverted past the accident but he didn’t notice that it was His son’s car. One of his mates phoned his mum and 999 for help.  Her son died instantly because of the impact of the car hitting the wall.  He was an organ donor and his mum still believes that part of her son is still living today.

They were very powerful and emotional stories of how becoming an organ donor could save someone’s life.  After listening to them, I would consider becoming an organ donor.

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An impressive view of the school

An impressive view of the school

Last Thursday when people came in to talk to us about organ transplants, it was very emotional because they were talking about people they knew who had an organ transplant that saved their lives.

There was one woman who lost her son in a car crash and he donated his organs and saved 5 people’s lives.  She said you never get over the death but you learn to live with it and it is a bit easier knowing her son donated his organs and saved other people’s lives.

It shows how much you take for granted and how quickly you can lose it.  When I came out of school that day, I told my family I wanted to be an organ donor. 

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Thoughts on Organ Donation by pupils from Bangor Academy2020-08-04T11:17:48+01:00

Statistics from LYL Roadshow

Final figures from Love Your Liver roadshow on May 20th:

Dr McDougal explains the Fibroscanner to Minister Poots

Dr McDougal explains the Fibroscanner to Minister Poots

 

• Screened (using online health check on laptops): 112 people
• Scanned by FibroScan: 60 people
• Referred for LFTs or further action: 37 people (33%)

Thanks again to everyone who helped set up this very successful health promotion day!

Statistics from LYL Roadshow2020-08-04T11:17:48+01:00

Recent cheque presentations

The 2K Family Walk

Every year Gareth Hunter’s in-laws, the Walsh family, do a sponsored walk for charity.

A well earned rest after 14 miles in the mountains

A well- earned rest after 14 miles in the mountains

 This year they were joined by Gareth’s father and sister.  A total of 25 brave souls walked for 4 hours, approx 14 miles, in the Cooley Mountains.  At 77 years of age, Gareth’s father Bob led from the front for most of the way – until he took a wrong turn, and found himself 2 miles off route ! 

£ 2,000 was raised for the work of the RVH Liver Support Group. 

The cheque was handed over on the morning of 20th May, at the Love Your Liver Campaign in Castlecourt, to LSG chair Donald Cairnduff. 

garethhunter1Huge thanks go to everyone involved for the strenuous fundraising and the strenuous hiking that went into gathering this magnificent total.

The photo on the left shows the cheque handover. From left is Bob, Gareth and Donald receiving the cheque on behalf of the RVH Liver Support Group.

 

Joyce Britt presents her cheque to the treasurer Tom McCready

Joyce Britt presents her cheque to the treasurer Tom McCready

Michael and Joyce Britt have been long standing supporters of our group and the picture on the left shows our treasurer Tom McCready reciving a cheque from Joyce at the AGM

 

 

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Recent cheque presentations2020-08-04T11:17:48+01:00

Love Your Liver – a first for Northern Ireland

January is Love Your Liver month on the other side of the Irish Sea. In January of this year the British Liver Trust’s travelling pop-up clinic screened 800 people in 8 different locations in Great Britain. 21% of these, following a fibroscan, were referred to their GPs. 

It has been a couple of years now since Gordon Cave first suggested that we try to bring the roadshow to Northern Ireland.  From then on he has worked steadily to keep us focused on making this happen.  Which it did – on Tuesday of last week.   

On 20th May the British Liver Trust ran their first Love Your Liver roadshow in Northern Ireland at CastleCourt Shopping Centre.  A screening area where members of the public could answer an online questionnaire was set up on the ground floor close to the Royal Avenue entrance.  The fibroscanning was done in an empty retail unit on the second floor.  Here those referred had an opportunity to talk to one of three consultants from the RVH who were present at different times of the day.

Members of the RVH Liver Support Group, alongside friends and family, acted as volunteers, handing out flyers, explaining the purpose of the road show to passers-by and chatting to people in the queues for screening and fibroscanning.  We were delighted that that Dr. Paul Darragh of the British Medical Association, Northern Ireland dropped by in the afternoon and that Health Minister Mr. Edwin Poots M.L.A. visited in the morning.  Both men took a very keen interest in the raodshow, chatting to a wide range of medical professionals, volunteers and members of the public.  The Minister was also given a clean bill of health after he very willingly sat through the screening process.

At the end of the day, 112 people had been screened, 60 had been fibroscanned and 37 had been referred for liver function tests or further action.  After 16 years as a charity working mainly in support of those dealing with liver disease, it was a privilege for the RVH Liver Support group to be working on a project aimed at preventing others from ever having to do so. 

We are indebted to many people, without whom it would not have been such a successful health promotion day:

·      –  to Andrew Langford, CEO of the British Liver Trust, for his direction on the day and his invaluable contribution  to all the pre-planning;

·      –   to Carol Hazell and Sandra Cooper-Keen of the British Liver Trust for conducting the screening so skilfully and so sensitively;

·       –   to Carolyn Adgey, RVH registrar, who did all the fibroscanning;

·     –  to Drs. McDougall, Cadden and Cash for giving of their time to speak discreetly to members of the public who had been fibroscanned;

·       –   to Binder Tohani and the management of CastleCourt for allowing us to stage the event and for calmly directing us through all the administration;

·       –    to Dave Pettard for photographs;

·       –   to Vincent Kearney for making sure everything was delivered and returned on time;

·       –   and to RVH LSG volunteers for their sensitive and interested engagement with everyone they dealt with..

All bar one of these volunteers knows about the trauma of liver disease, either as a patient or as a carer.  While we will never know the full impact of the Love Your Liver Campaign on the lives of those who visited the Belfast pop-up clinic, if only one person is spared what these volunteers and their families have gone through, the day will have been more than worthwhile.   

**** See thanks and photos in ‘From The Chairman’ section of this website ****

 

 

 

 

 

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Love Your Liver – a first for Northern Ireland2020-08-04T11:17:48+01:00

2014 AGM

The 16th AGM of the RVH Liver Support Group was held in the Samuel Irwin Lecture Theatre on Thursday 10th April.

Dr Roger McCorry addresses the meeting

Dr Roger McCorry addresses the meeting

Guest speaker for the evening was Dr. Roger McCorry, recently appointed consultant hepatologist at the RVH.Members, guests and friends met and chatted over light refreshments before the meeting which got underway at 7.30 p.m.  Initial business was the adoption of the minutes of the AGM for 2013 and of the Treasurer’s Report for 2103-14.

In his Chairman’s report, Donald Cairnduff reflected on a satisfying year which included:

·                a successful outreach event for children and parents at the Odyssey in September;

·     a successful outreach event for adults at the Seagoe Hotel in November,

·         two challenging and informative members’ meetings in October and February;

·         an outlay of £4, 800 on patient care;

·         an outlay of £17, 712 on hospital equipment

·          and continuous steady and sensitive work on patient care, which is by far the most important facet of the group’s work. 

He paid tribute to the many members and friends of the group whose efforts had raised £19, 325 for its work during the year.  He also offered his sympathies to all who had lost loved ones, including the friends and families of two recent committee members, Carina Matthews and Siobhan Gough.

The full report can be read by visiting the From the Chairman page on the website.

Dr. McDougall took charge of the meeting while the committee stood down.  The Committee for 2014-15 was then voted in: Gordon Cave (President); Donald Cairnduff (Chair); Kay Duffy (Founder); Sharon Millen (Vice Chair); Eileen Hearst (Secretary); Tom McCready (Treasurer); Jennifer Cairnduff: Seamus Cunningham; Rachel Quinney-Mee and Anya Toner.

Committee members Anya Toner, Sharon Millen and Donald Cairnduff (Chairman)

Committee members Anya Toner, Sharon Millen and Donald Cairnduff (Chairman)

The meeting concluded with a fascinating presentation by Dr. Roger McCorry. After summarising his career to date, Roger discussed ‘operational tolerance’, where the liver graft keeps functioning  properly and the recipient’s immune system stays strong despite the absence of immune-suppressive drugs.  Current research, while recognising the challenges and risks of weaning patients off immune-suppression, estimates that operational tolerance may soon be possible in up to 40% of selected cases.  Meanwhile, stem cell therapy offers the potential of transforming liver fibrosis into a healthy functioning liver.   While never downplaying the difficulties, Roger’s presentation offered a vision of a future when life might be easier for many transplant recipients.  The lively question and answer session that followed showed that it had certainly caught the imagination of his audience.

L to R Sandra Hamilton, Ann McKee, Donald and Carol watson.

L to R Sandra Hamilton, Ann McKee, Donald and Carol Watson. The three ladies are representing the Joe Watson Foundation.

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2014 AGM2020-08-04T11:17:48+01:00

Successful Love Your Liver roadshow – Thank You

I am writing to pass on my sincere thanks to  everyone who helped out at CastleCourt on Tuesday.

I felt it was a successful day and was very pleased with the response from members of the public.

The professionals – BLT staff, consultants, the registrar who did the fibroscanning – worked very hard but their professional interaction with individuals was helped enormously by the enthusiastic and proactive approach of everyone who volunteered.

Your contributions on Tuesday went well beyond standing, smiling and handing out flyers.  There  was a friendly and positive engagement with everyone who came our way and a willingness to see gaps that needed to be filled and to take on necessary tasks without waiting for someone to ask you that added significantly to the success of the whole event.

I am waiting for final figures from the British Liver Trust  of numbers who were screened and numbers who were fibroscanned.  These will appear on the website with a full account of the event when I have them.

We will, of course, never know the final outcomes or be able to measure the success of the day in terms of how individual lives were affected.   Suffice to say that if one  person , as a result of his/her being at CastleCourt on Tuesday, can avoid the distress that you all know as patients or as carers, all your work will have been worthwhile.

Founder Kay Duffy with Gordon who was instrumental in bringing LYL to Belfast

Founder Kay Duffy with Gordon who was instrumental in bringing LYL to Belfast

Donald, Minister Poots, Gordon, Dr McDougall and Andrew Langford

Donald, Minister Poots, Gordon, Dr McDougall and Andrew Langford

Health Minister Edwin Poots with Donald Cairnduff, Gordon Cave and the CEO of the British Liver Trust Andrew Langford

Health Minister Edwin Poots with Donald Cairnduff, Gordon Cave and the CEO of the British Liver Trust Andrew Langford

 

Seamus Cunningham, Kay Duffy, Gordon and Andrew Langford

Seamus Cunningham, Kay Duffy, Gordon and Andrew Langford

Vice chair Sharon Millen promoting the event

Vice chair Sharon Millen promoting the event

 

 

 

Dr McDougall and Carolyn who carried out the scans

Dr McDougall and Carolyn Adgey (Registrar) who carried out the scans

 

 

Volunteers Ivan Johnston and Colin Kirkpatrick

Volunteers Ivan Johnston and Colin Kirkpatrick

 

Successful Love Your Liver roadshow – Thank You2020-08-04T11:17:48+01:00

Money from the Mountains

Cheque presentation from the Charlie Beverland Foundation

Charlie Beverland was a well known local cricketer and rugby player and, once his playing days were over, for many years an Ulster Branch Rugby referee.  He sadly passed away in 2009 after a long struggle with liver cancer.  The Charlie Beverland Foundation was set up in his memory.

On the morning of 5th May, Belfast Marathon participants representing the Charlie Beverland Foundation met at La Mon Hotel in Castlereagh, ready for the tough challenges ahead and the prospect of raising significant funds for their chosen charities.

Sharon Millen receives a cheque from the Charlie Beverland Foundation

Sharon Millen receives a cheque from the Charlie Beverland Foundation

Before they left, they were joined by RVH Liver Support Group Vice-Chair Sharon Millen, who was looking forward to an altogether less strenuous day.  Sharon was proud on behalf of the Group to receive a cheque from the Foundation for £5,753.  This money was raised through a cycling event in the French Alps undertaken in July 2013 by friends of the Foundation, including ex-Irish rugby internationals Paddy Johns and Dennis McBride and ex-Irish Hockey internationals Jimmy Kirkwood and Billy McConnell.  They completed L’Etape de Tour, which is one of the more gruelling stages of the world’s premier cycle race, La Tour de France.

The RVH Liver Support Group is very grateful to the friends of the Foundation who helped raise this money and to Charlie’s daughter Megan who co-ordinated the fund raising and set up the cheque presentation on May Day morning.

As with all donations to the group, the money will be used judiciously in support of all who are dealing with liver disease – and their families and carers – throughout Northern Ireland. 

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Money from the Mountains2020-08-04T11:17:48+01:00

Walking the wall – in honour of real super heroes

At just after 3 p.m. yesterday, people in Belfast’s Great Victoria Street were stunned to see Banana Woman appear on the roof of the Europa Hotel.  She smiled and waved before abseiling down the wall.

She was the last in a long line of superheroes to make this descent.  Various Caped Crusaders and at least three Spidermen had preceded her – as well as a few ordinary members of the public whose inelegant progress down the wall didn’t have quite the same impact with spectators as Banana Woman’s.

Sharon and Donald representing RVH Liver Support Group

Sharon and Donald representing RVH Liver Support Group

In real life Banana Woman is RVH Liver Support Group Vice-Chair Sharon Millen.  Alongside Chairman Donald Cairnduff, she had been roped into the Nothern Ireland Transplant Forum’s charity abseil, part of their year-long  ‘9 GOALS’ project.  Others abseilers included representatives of donor families, transplant recipients and their friends, as well as medical professionals.

The purpose of the day was threefold – to raise money for the Denise Carter Foundation, which funds projects in aid of organ donation;  to celebrate the new life that transplants deliver; and to honour real and generally unnoticed superheroes – the families who agree to the donations that restore life to very ill people.

Back on firm ground, Sharon and Donald were proud to receive medals from Leah Carter.   Leah’s mother Denise passed away shortly after giving birth to her. Her dad Steve set up the Foundation in Denise’s memory after her donated organs had saved or transformed five people’s lives.

Sharon Mileen and Donald Cairnduff receive their abseiling medals from a masked Leah Carter

Sharon Mileen and Donald Cairnduff receive their abseiling medals from a masked Leah Carter.

It was a privilege for both of them to represent the RVH Liver Support Group, many of whose members are transplant recipients, at such a memorable and public celebration of the gift of life.

 

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Walking the wall – in honour of real super heroes2020-08-04T11:17:48+01:00

Resignation from BLT Board

In October 2011 we had great pleasure announcing the appointment of our President Gordon Cave as a Director on the Board of Trustees of the British Liver Trust. This was a very great honour for Gordon personally and for the RVH Liver Support Group because it was his work within the group that earned him the respect to be chosen for this important role, and indeed for Northern Ireland to be represented at such a high level within a national organisation. Unfortunately, due to recent ill health and the travelling involved to meetings in London Gordon decided to resign from the Board in January this year.

During his time as a Trustee he contributed significantly to the work of the British Liver Trust particularly as a patient advocate where his passion and concern for the plight of those suffering from liver disease and their carers ensured that the patient voice was always heard at Board Meetings.

His most significant achievement was lobbying strongly to have Belfast included in the BLT Love Your Liver Campaign Programme and as a result the Road Show and Pop Up Clinic will be visiting Northern Ireland for the very first time and set up in the Castle Court Shopping Centre on Tuesday 20 May 2014

We are delighted that Gordon will be continuing his work with the RVHLSG.

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Resignation from BLT Board2020-08-04T11:17:48+01:00
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