ROYAL VICTORIA HOSPITAL LIVER SUPPORT GROUP
NIC100892
ANNUAL REPORT FOR 2025
Registered Address
Crievemoy, 8 Dungannon Street, Moy, Dungannon, BT71 7SH
Trustees
Kay Duffy, Jim Kilpatrick, Rachel Quinney-Mee, Sharon Millen, Patricia Getty, Ashley Collins, Jane Megahy, Arthur Goan (part), Sandra Lawler (part)
Basis of Reporting
This report covers the activities of the Group for the calendar year 2025. The Group’s AGM was once again held via Zoom on Thursday 20[th] March. All members received invitations to attend, including those for whom we don’t hold an email address, to ensure all members were aware of the meeting. Members attending were issued with all relevant AGM papers by email in advance of the meeting, namely the Agenda, 2024 Annual and Financial Report, and a summary of the Accounts for 2024.
Committee
At the AGM all offices were declared vacant. All existing Committee members were willing to continue serving in office, and were duly re-elected.
Election of Office Bearers
In line with the procedure laid down in our Constitution, the Chairman, Vice Chairman, Treasurer and Secretary were elected into office by the Committee members at their first meeting following the election of the full Committee at the AGM. These were Chairman – Jim Kilpatrick, Vice Chairman – Arthur Goan, Treasurer – Jim Kilpatrick, Secretary – Ashley Collins.
Bereavements
We remember the members of our Group who unfortunately passed away during this reporting period and pass on our condolences to their families.
Meeting our Stated Objectives
The work of the Group continues to be driven by the stated objectives in our governing document and as ever, any review and evaluation of our work must assess how well we have fulfilled those objectives in the past year.
1) To foster an atmosphere of mutual support and encouragement among people suffering from liver disease and their carers, families and friends.
The AGM was held on 20[th] March by Zoom, with the election of Committee members being conducted by Dr Leanne Stratton, who also brought those participating in the meeting up to date with news from the Liver Unit. As with our other Zoom meetings, members from across all parts of the Province participated. There are many practical benefits and efficiencies in holding our AGM online, something the Committee have agreed should continue for future AGMs.
We held a full schedule of successful coffee mornings at venues across the Province during the year. These took place in Cookstown, Bangor, Ballymena, Portadown, Derry/Londonderry, Newcastle, Belfast, Omagh, Enniskillen, Hillsborough, Coleraine, Newry and Mossley. Members and their families turned up in large numbers across the year, offering support to each other, and creating and renewing friendships.
Our annual Members’ Lunch was held in early June, once again at the Tullyglass Hotel in Ballymena, when we were delighted to have a fantastic total of 144 members, family members and friends along for a most enjoyable full buffet lunch. The many positive comments on the venue, and the quality and quantity of the food on offer, means we are returning again in June 2026.
All of the events above allow us to bring our members together socially, providing them with opportunities to mutually support each other through friendship and the chance to understand what each other has gone through in their own personal liver disease journey. We should not, however, lose sight of the primary purpose of the Group, patient and family care and support. This continues discreetly in the background, away from public gaze. One to one private support of patients and their families occurs via text messages and phone calls, often at unsociable hours, but always with the aim of providing the best possible support that we can in any particular scenario.
Many hours are spent each month by the team of Kay Duffy, Jim Kilpatrick and Arthur Goan assisting and supporting adult patients and their carers, with the same commitment shown by Rachel QuinneyMee and Patricia Getty in their support of children and adolescents with liver conditions, and their parents. Due to the ever-rising numbers of patients we support, we brought on board four member volunteers to assist with staffing our Helpdesk at the Liver Clinics at 6B Outpatients in the Royal Victoria Hospital, welcoming Brian McGlade, Carol Wazir, Hazel Graham and Mairead Gruhn to the team. They are now sharing the workload, allowing us to cover all the clinics now happening each day Monday to Friday.
During 2025 those committee members with responsibility for patient care made 910 contacts with adult patients and carers, and 220 with children, adolescents and their parents. Most of these have been sustained contacts over difficult and sometimes distressing periods of time. Patient care remains the core element of our work and we continue to carry it out in a very dedicated and dignified way.
As well as practical and emotional support, we continue to offer financial assistance to patients travelling outside Northern Ireland for liver-related procedures, pre-transplant assessments or transplantation. For the financial year to 31[st] December 2025, we paid out £23,700 in patient support grants (2024 - £25,100). There were 25 for procedures or treatment for children and young people (plus 3 for adults), 30 were for pre-transplant assessments, with 21 being paid after successful transplantation. In addition 5 other patients declined the offer of a Patient Care payment after being transplanted.
2) To raise awareness of liver disease in all its forms for the benefit of the public .
As detailed above, our Helpdesk presence outside 6B Liver Outpatients in the RVH has seen a very busy year, with the Patient Care team interacting with patients attending their checkups and appointments. A wide range of leaflets from the British Liver Trust are on display, as well as Group contact information and our merchandise - Group branded beanies, baseball caps and key rings. Clinics are now held each day, with the principal pre- and post-transplant clinics on Tuesday and Thursday mornings, usually with no more than 8 to 10 appointments. We look forward to chatting with patients as they come and go - if you are passing by for an appointment, please do stop and say ‘hello’.
Throughout the year the joint clinics between Birmingham Children’s Hospital and the Royal Belfast Hospital for Sick Children have continued, presenting great opportunities for direct face to face contact, often during difficult times, and for parents of new patients to learn about the support the Group can offer them. Thanks go to the staff in the Children’s Hospital for their support and cooperation during the joint clinics. New Transition Clinics have now begun, to ease the move for young people away from care at the Children’s Hospital to future care in the adult environment in 6B Outpatients. This can be a stressful change for some, and is handled with care and tenderness by everyone involved.
Our attendance at the occasional joint King’s/RVH clinics held in Ward 6D, continued thoughout 2025, where we are able to inform the attendees about the Group, and offer advice and support to those being seen. This cooperation with the medical team is greatly appreciated by them and the patients alike. Likewise, January 2025 saw the introduction of patient clinics in Altnagelvin Hospital in Derry/Londonderry, under the very capable care of Dr Becca O’Kane, who is now based there. We are delighted to be invited to be present at those and to offer the same support to the patients attending, as we do to those coming into clinics in the RVH.
During 2025 our Facebook, Instagram and X channels, as well as our own website, were a vital means of disseminating updates from the Public Health Agency, Organ Donation NI, the British Liver Trust, as well as from the RVH Hepatology Consultants, and our own Group-related activities and information.
September saw the return again of the British Liver Trusts’ ‘Love Your Liver’ Roadshow to Northern Ireland. This gives the public the opportunity to have a free Fibroscan check in the Roadshow trailer. We were delighted to support the Liver Trust staff in managing the queues waiting for their scan, and chatting to the public about organ donation and the various types of liver illness. It was an extremely busy time, with nearly 500 people scanned in Londonderry, Belfast, Enniskillen as well as at Stormont Buildings, of which around 5% received advice on following up their scan with their GP. We look forward to the Roadshow returning in 2026, subject to funding being available, and have pledged our continued support to the British Liver Trust once again.
For the first time in many years, the British Association for the Study of the Liver (BASL) held its annual conference in Belfast, where we were very pleased to have a presence each day. Attended by hundreds of liver surgeons, consultants, nurses, researchers and other clinicians, as well as pharmaceutical companies and equipment manufacturers, it proved to be an invaluable showcase for the work we do in support of liver patients across the Province. There was a huge amount of interest in the type of support we provide, the volume of it, and how we achieve what we do with a small number of dedicated volunteers. New contacts were made, and relationships across the UK strengthened. Chairman Jim Kilpatrick was invited to address the Liver Nurses conference on the patient experience, which was very well received.
Our annual Family Christmas Party for those children suffering from a liver condition and their siblings, was a success once more, thanks in no end to the work done by Patrica, Rachel and Ashley, and the very welcome return of the real Santa once more.
3) To support by means of financial assistance … persons suffering from liver disease through research or the provision of equipment or facilities .
At the request of the Sister, we were delighted to be able to provide three new recliner armchairs for use in the patient rooms in Ward 6D, as a means of helping family members wishing to stay for an
extended period of time alongside a patient, perhaps in poor health. These have proven to be a real asset for the Ward staff as they endeavour to facilitate a patient’s or family’s needs to the best of their ability.
The Relative’s Room in the Glasshouse on Ward 6D continues to be an invaluable asset, being used by patients, family members, and Ward staff. It is also a quiet space for the Consultants to discuss the care of patients with their families. Supplies of tea, coffee, sugar, milk and biscuits are continually restocked as necessary.
We were delighted to be able to fund online training via the King’s Academy for four of the Liver Unit staff, to increase their knowledge and skills. We see this as a long term investment in the care of current and future liver patients coming through the Royal, as well as an opportunity for those staff to enhance their future promotion possibilities.
At Christmas, individual adult patient gift bags were made up, comprising a selection of foodstuffs, confectionery and toiletry items, along with a variety of crossword, sudoku puzzle books and pens. The child patients received individually packaged ‘goodie bags’ containing Christmas mugs/beakers, socks and a sweet treat for the teens and children, soft toys for the babies and other small items to keep them all busy and active. Our thanks go to those on committee who spent considerable time putting these together. Everything was gratefully received and hopefully brought a smile and a little pleasure to those unfortunate enough to be staying in hospital over the Christmas period. As a means of thanks for all they do over the year, we bought Christmas lunches for the staff in 6B Outpatients, and in Ward 6D - the very least we can do for the care and compassion they show to all patients they encounter.
Having begun towards the end of 2024, we continued to supply Group-branded personal washbags, containing vital necessary personal hygiene items such as a toothbrush, toothpaste, shower gel, cleansing wipes, lip balm, deodorant, facecloth, and for the men, shaving gel and a razor. The ladies receive some moisturising face wash, skin moisturiser and some hygiene pads. These washbags, designed for those patients admitted to the Ward from the Emergency Department without any personal cleaning items, have been very well received by both the patients and the Ward staff caring for them, who appreciate the ‘feelgood factor’ which comes from receiving quality branded items as part of their care. We will continue to keep the Ward stocked with these washbags in the future.
4) The promotion of the organ donor register .
The Group has always espoused the benefits of organ donation and organ transplantation in all its forms, and we take every available opportunity to promote those benefits through all possible means. While this happens throughout the year, it reaches a peak during Organ Donation Week in September.
We have many very generous members of the Group, who once more shared their honest, loving recollections about how their lives have been positively changed due to organ donation. These included recent transplantees, those who have been transplanted for a number of years, and the parents of some wonderful young children enjoying a pretty normal life in school and with their friends. These social media posts were widely shared by other patient support groups and the Public Health Agency, to encourage people to see the benefits of organ donation and transplantation, and to ‘have the chat’ about their own wishes with their family and friends.
A number of Committee members supported the Public Health Agency’s “Race for Life” virtual cycle from Belfast to Dublin, undertaken at a major public event in Grand Central Station during Organ Donation Week. This highlighted to the general public passing through the Station, and the Health
Minister, Mike Nesbitt, the positive health impact of organ donation, and the difference it makes to organ recipients.
Ongoing work
The core work of the Group continues to be undertaken by our small dedicated team of Committee members, spread geographically across Northern Ireland, who keep our primary goal of support and care for liver patients and their families and friends to the fore at all times. Each member has their own particular responsibilities, ensuring we operate efficiently for the collective benefit of the whole Group.
Our Founder, Kay Duffy, remains the anchor of the Group, with her encyclopaedic knowledge and recollection of patients covering the full lifespan of the Group from its inception in 1998. She does all this with the same care and attention to detail as she has always done for the many hundreds of patients who have been supported over the years.
Arthur Goan, for personal reasons, stood down as an active Committee member during the year. With full Committee approval, he remains responsible for leading our Adult Patient Care duties, liaising with Kay Duffy and Jim Kilpatrick, and our four new Helpdesk volunteers, creating attendance rotas, and managing any changes required. He ensures the Relative’s Room in Ward 6D is clean and restocked with tea/coffee and other consumables. He also focuses on specific areas affecting our liver patients such as alcohol, and hepatitis.
As a result of Arthur stepping down, his role as Vice Chairman has now been assigned to both Sharon Millen and Rachel Quinney-Mee, each of whom has served as Chairman of the Group in the past. I have every confidence that they will provide strong support to the Committee through these roles.
To bring our numbers back up to eight, Sandra Lawler was co-opted on for the remainder of this term, through to the 2026 AGM. She has assumed responsibility for event planning and coordination, enhancing our ability to arrange and organise member events more efficiently than before. We welcome her enthusiasm and look forward to seeing her work paying real benefits in the future.
Sharon Millen, acts as our liaison with the Charity Commission, our link with all matters of academic research into liver disease and psychology, and our coordinator for the Belfast Marathon and patient participation in the British, European and World Transplant Games.
Ashley Collins is the Secretary of the Group, producing Minutes of our proceedings of a very high quality. She also willingly assists with activities for our children and adolescents, offering invaluable help to Rachel and Patricia when required.
Rachel Quinney-Mee and Patricia Getty, in addition to their roles as Patient Carers for children and adolescents continued their very active liaison work with the Public Health Agency on the Group’s behalf. Their dedication to their role takes up many hours of their time, all of which helps foster a close relationship with the parents of the children they support.
Jane Megahy, our Social Media Administrator, continually produces high quality graphic work for our social media channels and emails, and our regular monthly newsletter, ensuring everyone is aware of our member events. We now rely heavily on our use of technology, for both internal and external communication, and will continue to explore any future software which might benefit us.
Jim Kilpatrick continues to fulfill the roles of Chairman, Treasurer and Adult Patient Carer. His interactions with the consultants, ward staff and outside bodies such as the British Liver Trust and NHS Blood and Transplant is continual, and gives direction to the Group’s focus and activities. Jim has also recently been appointed as a Patient Partner with NHS Blood and Transplant’s Liver Advisory Group, providing a patient view on, and input into, the decisions taken surrounding organ donation, retrieval and transplantation processes, and future advances which will provide better utilisation of organs across the UK. This will provide large amounts of background information which will ultimately benefit the knowledge base within the Support Group, and lead to better support from us all.
The work of the Group is extensive and wide ranging, and it is clear that we would not be able to perform our roles and provide the support we do without the ongoing and unwavering financial support we receive from fundraisers, whether patients or their families or friends, or monies we receive in the form of bequests or ‘in memoriam’ donations. Every single penny we receive is put to use here in Northern Ireland to further the charity’s goals and purposes.
We are rightly recognised as the ‘de facto’ patients’ voice for liver patients across Northern Ireland, irrespective of the type of condition. Our influence extends beyond our local borders, through our relationships with the British Liver Trust, King’s College Hospital, Birmingham Children’s Hospital, and other patient support groups across the British Isles, including Liver Ireland Support Network (LISN), which supports liver patients in the Republic of Ireland.
Financial Report
The total net worth of the Group at 1[st] January 2025 was £260,138.84, made up of our Danske Current Account £1,017.63, Danske Investment Account £79,121.21 and NI Central Investment Fund for Charities (NICIFC) £180,000. This NICIFC investment equated to 12,241 shares in the Fund, which with a share price on 31[st] December 2024 of £15.5770 meant our shareholding at the start of this financial year had a market value of £190,678.06.
Income
Total income for 2025 came to £112,496.86 (2024 - £110,440.29), our highest ever income thanks to several one-off donations. Of this total, £60,254.67 came from direct donations (2024 - £65,594.18). Some £40,873.97 came via Just Giving including Gift Aid on applicable donations (2024 - £34,516.63). The effectiveness of donating and fundraising via Just Giving is well known, and we find many fundraisers choose this online system for their campaigns. Thanks to all of you. Our own direct Gift Aid reclaim from HMRC produced £2,005.25 (2024 - £3,207.28).
To maximise the return on our investment monies, we maintained our shareholding with the Northern Ireland Central Investment Fund for Charities of 12,241 shares. This equates to a total investment of £180,000. Our NICIFC investment has been made with security and longevity in mind, and we will ride out any short term rises and falls which occur. In line with the Fund’s long term stated aim of achieving a consistent 3% yield on investments, the dividends received from the Fund during the year, added to the much smaller Interest from our Danske Accounts, came to £7,127.97 (2024 - £5,627.20).
We must offer thanks to everyone - patients, family members and friends - who undertook sponsored fundraising on our behalf, and to those who made quiet and discreet personal donations during the year. The ingenuity and inventiveness of our fundraisers is amazing to see, and never fails to impress. Expenditure
Total expenditure for the year came to £82,377.71 (2024 – £54,581.68), of which £23,700 was Patient Care payments (2024 – £25,100). The rise in expenditure compared to 2024 is primarily due to there
being a marked increase in the amount defined as Members’ Events and Equipment, from £12,090.13 in 2024 to £29,524.85 this year. This covers numerous outgoings, the largest of which are the costs of running our coffee mornings and the annual Members’ Lunch, the entry fees for our fundraisers participating in the Belfast City Marathon as well as restocking our branded running vests, subsidising our members participating in the World Transplant Games in Dresden, the purchase of our new branded gazebo and flags, beanies/baseball caps and keyrings, and the family Christmas party and Christmas gifts for the inpatients.
This year’s spend on Hospital Equipment and Education for the Liver Unit of £7,836.00 (2024 - £856.60) covers the purchase of three recliners at £2,700.00, plus £5,136.00 for the staff training via the King’s Academy.
Committee travel expenses, vital to ensure the Committee members can effectively undertake Group business across the whole of the Province, came to £5,211.65 (2024 - £4,240.47) and reflected a marked increase in demands for attendance at fundraising events, committee meetings, members’ meetings and other Group organized events. No committee expenses are paid unless approved beforehand and fully receipted. We provide a summary of all of the expenses incurred, per person, to the Charity Commission as part of our annual submission of our accounts.
Meeting Expenses were £2,780.71 (2024 - £2,088.94) and covered our use of the Mount Business Centre in east Belfast for our face to face members’ meetings, our participation in the BASL Conference, and one Committee gathering.
Telephone and postage charges remained low at £299.49 (2024 - £249.76) thanks to our use of a low cost phone service provider, and maximising our use of electronic communications with our members. Printing, Leaflets & Stationery also saw a sizeable decrease to £517.86 (2024 – £1,668.44), mainly due to there being no need to reprint leaflets this year. As with all planned expenditure, quotations were received and considered by the committee before any purchase.
Our Public and Trustees Liability Insurance premium rose slightly again to £588.53 (2024 - £557.36). IT costs rose to £3,611.99 (2024 - £1,298.73), covering the purchase of three laptops for Committee use, plus charges for software licences and maintaining our website, as well as our bulk email and text service subscriptions. We have availed of free licences for Microsoft Office, as part of their service to non-profit organisations, which has saved considerably on recurring licence revenue costs.
Maintaining consumables (tea/coffee/biscuits/milk/sugar) in the Relatives’ Room in Ward 6D came to a total of £2,345.52 (2024 - 2,111.25).
Having subscribed to NICVA since the formation of the Group, initially to offer advice on how the Group should be run, and providing a level of reassurance if issues arose, the Committee decided that, not having referred to them for a considerable number of years, our ongoing annual subscription could no longer be justified.
We once again made a payment of £750 to the British Liver Trust’s “Big Give” in December, as part of their drive to raise £75,000 (match-funded to £150,000). This will go towards providing the services to liver patients which we know a number of our members subscribe to, including online specialist forums and the liver nurses phone service.
Our annual return visit to King’s College Hospital was in September. These visits, by the Patient Carers on the committee, are vital in ensuring we keep up to date with any personnel or operational changes
at the hospital, and allow us to build and develop relationships with those people our patients are most likely to encounter when they travel to King’s for either assessment or transplant. The resulting benefits to those we care for are massive, and should not be under-estimated. Our ‘Patient’s Guide to Visiting King’s College Hospital’ - a handbook for patients from Northern Ireland who need to attend King’s, was reviewed and updated as necessary. It provides essential information about how to get to King’s, accommodation options, and travelling around the area to and from the hospital. This will continue to be reviewed annually and updated as required to ensure it remains current at all times. Rises in travel and accommodation costs, seen across the whole travel industry, are reflected in the expenditure for the visit increasing to £2,887.56 (2024 - £2,328.68).
The year finished with a total net worth of £290,257.99, made up of our Danske Current Account £3,644.46, Danske Investment Account £106,613.53 and NI Central Investment Fund for Charities (NICIFC) £180,000 (historical cost). As referred to earlier, the NICIFC investment market value at 31[st] December increased to £207,417.62 (2024 - £190,678.06).
It should be noted that the administrative costs of running the Group are fully covered by our investment income and Gift Aid reclaims, meaning every single penny of personal donations or monies received by fundraising efforts, goes to patient care, running member events and supporting the medical staff’s work in supporting patients, with any surplus being invested to produce increased investment income.
Conclusion
As was the case in 2024, 2025 was once again a record year for the Group’s finances, as well as our range of operations. With our financial security, the Committee will continue to explore new avenues of patient care, which would have been unthinkable even five years ago.
With our Helpdesk service at the transplant clinics now running five days a week, and our presence increasing at various other clinics, along with our ability to visit patients in Ward 6D, our aim is to constantly improve our patient support, and to react to the suggestions and wishes of our members. We are now supporting each of the joint clinics at Altnagelvin, and continue to expand our relationship with the Gastroenterology unit in the Ulster Hospital. As time and resources permit, we will continue to search out early patient engagement opportunities at the other regional hospitals across the Province, in order to be able to support liver patients early in their journeys.
You know I state frequently how immensely proud I am of how our Committee works diligently in their service to the Group’s members, and with a strong commitment to their roles, this will continue for some time. Their work however is for nothing without the desire from the members to support all we do, not only through involvement in our meetings and activities, but also through their continued financial support. We can only do what we do, because you enable us to do so.
Date: January 2026
Jim Kilpatrick MBE Chairman / Treasurer / Adult Patient Carer