At the start of 2025, Dave Mcnally, our longstanding Treasurer of twelve years, decided to step down from his role. The charity thanks Dave for his long voluntary service; his ability to keep things on track and his generous offer to stay in post until we could recruit, and he could mentor, a replacement. We started to look for a replacement in March 2025 and after a long search for the right candidate we were very lucky to appoint Lillian Mbaabu in August 2025. We formally welcomed Lillian onboard as a volunteer at the AGM in September. Lillian and Dave undertook a period of handover such that in early 2026, Dave was finally able to step down from his role. Work to establish new income sources has been delayed by the staff changeover as Lillian settles into her post.
Unfortunately, in June 2025, Nigel Goode (our IT volunteer) indicated he also wished to retire from UKPIPS. Nigel had over eight years voluntary service with us and his inputs to all IT areas will be sadly missed. Thankfully, David Cohen was able to undertake a handover from Nigel until we were fortunate enough to appoint Stephen John from his voting member position to IT volunteer, at the AGM in September 2025.
We then heard in February 2026 that Andrew Morris, had to retire from his role as trustee (with responsibility for Communications), due to his full-time work pressure. We look to recruit to this role in the coming year.
At the AGM, the remaining trustees were re-appointed to role, and Steve Harrison was appointed as a new Voting member with a view to becoming a trustee in the future. Following the meeting, Gary Millar stepped down from his voting member role.
Carolyn Middleton continued to support the trustees and our community throughout the year. Carolyn commenced a review of our factsheets and leaflets which resulted in the trustees deciding not to re-apply for PIF Tick accreditation as the cost and effort far exceeded the reward. The number of factsheets had diminished over the years and many were no longer relevant to patients today. It was felt that this activity could be reinstated in the future, if needed.
Legal and Governance
Confidentiality Agreements were circulated and completed for trustees. Volunteers are still to follow.
A meeting was held in July to review the risks and benefits of moving the charity to a Community Interest Organisation (CIO). Judith Gower drafted a briefing document which was tabled at the AGM in September and agreed. Work commenced over the winter on setting up a draft Governing Document for UKPIPS.
Advocacy and Safeguarding
Gary Narborough undertook his Safeguarding training in April 2025 and has been trying to locate a suitable online follow on.
Eight enquiries were received through the website contact form this year and all were responded to by one or more of the trustees.
In addition to the previous advocacy work mentioned in Operations, Sue wrote a supporting letter for supporting a patient whose case was being submitted to the Sub Regional Immunoglobulin Assessment Panel (SRIAP) regards reverting to pre-filled syringes, and for another who had a job offer withdrawn following an Occupational Health assessment with non-specialists. The offer was re-instated on appeal. Advice was also given to a mother whose child was being discriminated against for poor school attendance due to ill health.
Plans for future periods
•Recruitment to the Medical Panel - look to appoint at least one more Consultant, a Clinical Nurse Specialist and potentially a GP or someone from an ICB (Integrated Care Board) with GP interest.
•Recruitment of more volunteers / member involvement, once new charity structure is in place - To ensure a broader pool of knowledge and expertise underpinning the charity and its functions.
•Recruitment of more trustees to include a replacement for the Communications role.
•Set up and run a patient day in Manchester.