Annual Report 1st April 2023 to 31 March 2024
PIP-UK Poland Syndrome Support & Network
www.pip-uk.org Charity Registration Number :1188941
Vision
We will be the centre of expertise for Poland Syndrome Research, Wellbeing & Support Services and Connection.
Mission
Advocate for earlier, consistent diagnosis and treatment paths for the Poland Syndrome community. Building awareness for Poland Syndrome and providing support to the community.
Goals
Our main goals are centred around generating scientific activity, supporting the wellbeing of & connecting people across the Poland
Poland Syndrome About Poland Syndrom• Babies are born with underdeveloped chest muscle on one side. Typical symmetry seen in pectoralis major muscles Asymmetry seen due to absent pertoral muscle Poland Syndrome is a rare birth difference named after Dr Alfred Poland credited with its discovery 80-99/. OF PEOPLE WITH POLAND SYNDROME HAVE: ABSENT OR UNDERDEVELOPED: CHEST MUSCLE BREAST NIPPLE 01 5-29/0 of people with Poland Syndrome have: Aplasia/Hypoplasia of the sternum 02 66 POLAND SYNDROME CAN AFFECT ONE HAND ON THE SAME SIDE OF THE BODY. Hand Differences VISUALLY SMALLER OR FUSED FINGERS, ABSENT OR SHORTENED 5-29% of people have Finger syndactyly 30-79% of people have Finger symphalangism or Fused Finger bones 01 02
About PIP-
UK
Founded by Sam Fillingham in 2011, PIP-UK began as a community group to raise awareness of Poland Syndrome (PS) and improve the lives of those affected by the condition. Initially, the organization created a website to share information, set up a phone line, and launched a Facebook page to connect individuals and families. Early on, it became clear that many people were struggling to get a proper diagnosis for themselves or their children. Some families we connected with had spent years without answers, and even individuals in their 80s were living without a formal diagnosis.
----- Start of picture text -----
Agenda
----- End of picture text -----
This lack of awareness left many grappling not only with the physical challenges of PS but also with mental health struggles, believing they were alone in their experiences.
Since then, PIP-UK has grown into a vibrant and supportive community. The organization offers peer support events, wellbeing sessions, family fun days, children’s clinics, and has established a global Poland Syndrome Register to deepen understanding of the condition. All activities are free to access, with optional donations supporting the community, and are open to all ages.
Living Well for Parents
2023
On October 22, 2023, PIP-UK hosted the Living Well for Parents: Stay, Play, and Connect event, bringing together families affected by Poland Syndrome for an afternoon of connection, learning, and support. Held with the generous support of Forever Manchester and the Co-op Community Fund, the event welcomed 30 attendees, ranging in age from 1 to 60 years old.
Key Highlights:
-
Engaging Parent Workshop: Led by guest speaker Angel, the session provided parents with practical tools to discuss Poland Syndrome with their children. Parents expressed appreciation for learning new communication strategies, with one participant noting, "I learned how to better communicate as a family.“
-
Children’s Play Activities: Expert play workers & volunteers facilitated interactive indoor and outdoor activities, allowing children to bond and have fun while their parents engaged in discussions.
-
Community Connection: Families shared their experiences, strengthened friendships, and built supportive networks. As one attendee said, "Meeting other families and watching the kids interact was the best part.“
Living Well for Parents
2023
Feedback from the event was overwhelmingly positive:
-
100% of attendees who responded said they found the event valuable and that similar workshops should be held in the future.
-
The event received an average rating of 4.8/5, with particular praise for the parent workshop and the opportunity to meet other families.
-
Parents valued hearing shared experiences, with one commenting, "It was great to hear how other parents and families approach Poland Syndrome.“
-
Several attendees suggested longer sessions and additional activities to deepen engagement.
This event marked the beginning of our Living Well series, with more planned sessions to support parents and families affected by Poland Syndrome. Based on the feedback, we are exploring options for:
-
More structured workshops focused on mental health, family dynamics, and self-care.
-
Regional and online sessions to reach more families across the UK.
-
Extended and overnight events to allow deeper connections within the community.
We extend our deepest gratitude to Forever Manchester, the Co-op Community Fund, our dedicated volunteers, and the families who attended. Your engagement and feedback are instrumental in shaping future initiatives. Together, we continue building a stronger, more connected Poland Syndrome community.
What about PS? A Poland Syndrome Podcast Launch
The PIP-UK community proudly launched its first-ever podcast series on Poland Syndrome Awareness day in 2023.
Hosted by Giselle Barbosa, PIP-UK Ambassador, entrepreneur, and athlete and co-created with young volunteers from the community. The podcast aims to illuminate the lived experiences of the Poland Syndrome (PS) community while raising awareness of this rare condition. Since its debut, the podcast has achieved remarkable success, reaching nearly 1,000 downloads across platforms like Apple, Spotify, Amazon, and TuneIn + Alexa. Agenda
Most Popular Episodes:
-
Gunnar Anderson Episode: A deep dive into Gunnar Anderson’s inspiring journey.
-
Male Perspective Episode: Offering insights into the unique challenges faced by men living with PS.
Diverse Guests: The series features interviews with notable individuals, including:
-
Paralympian Kim Daybell
-
Former Cricketer Lewis Hatchett
-
Australian Gymnast Clay Mason Stephens
-
Medical professionals and experts
-
Innovative brands like bra companies
-
Members of the PS community sharing personal stories
With thought-provoking discussions and an inclusive approach, “What about PS? has become an essential resource for people living with Poland Syndrome, their families, medical professionals, and the broader rare disease community.
What about PS? A Poland Syndrome Podcast Launch
Key Achievements:
-
Community Engagement: The podcast provides a platform for the PS community to connect, share experiences, and feel seen. Listeners frequently comment on the relevance and value of the topics covered.
-
Awareness Raising: By featuring prominent figures and personal stories, the podcast amplifies awareness about Poland Syndrome and the challenges faced by individuals living with it.
-
Resource Building: The series serves as an educational tool for medical professionals and families, offering insights into diagnosis, treatment options, and mental health support.
: 4. Volunteer Development The podcast was co-created with young volunteers, including Kira Aspland and Barry and Giselle Barbosa, who led the production alongside Garry at Grow Media. The experience gained through their volunteer roles resulted in paid employment opportunities for Kira and Barry as they harnessed the skills developed during the project.
Sam Fillingham, CEO of PIP-UK, shared, "We're thrilled to be launching this new podcast series and can't wait to share it with our audience. With Giselle Barbosa’s expertise and the insights of our guests, we believe this podcast will become a valuable resource for the Poland Syndrome Community and medical professionals."
Listeners have expressed gratitude for the podcast’s relatable content, noting it has provided comfort, inspiration, and practical information for navigating life with PS.
Inclusive Fashion Show
Birmingham
In March 2024, the third annual Birmingham Children's Hospital Accessible Fashion Show was a groundbreaking moment for PIP-UK, showcasing the transformative power of collaboration, advocacy, and community connection. As a small charity supporting individuals and families affected by Poland Syndrome, this event exemplified our commitment to raising awareness, fostering inclusivity, and empowering our beneficiaries to celebrate their uniqueness.
This year’s event marked a significant milestone for the Poland Syndrome community. For the first time, a group of young women with Poland Syndrome walked the runway in bespoke outfits designed by the renowned Malawian fashion designer Lily Alfonso, who flew in to meet the Agenda models and showcase her collection.
Through the generous support of Dr. Andrea Jester and Birmingham Children’s Hospital, this was made possible. Their funding covered vital costs, including sponsoring our community member Gift, who travelled from Uganda to participate in this life-changing experience.
For many of the participants, this was a moment of empowerment and self-acceptance:
Erika: “Today has been life-changing. It’s my first time meeting others with Poland Syndrome, and being part of this wider community has been so special.”
Becca: “Walking down the runway today made me feel amazing. I hope this shows how beautiful and diverse our bodies are.”
Gift: “It was emotional, but all emotions are welcome. I’m so happy to be here.”
Inclusive Fashion Show
Birmingham
opportunities for them to be seen, heard, and celebrated.
PIP-UK’s CEO, Sam Fillingham, reflected on the importance of the event:
one should ever feel alone with Poland Syndrome.” Agenda
to share their experiences.
dedication and expertise of key collaborators:
reality, including enabling Gift’s participation.
needs and preferences.
Inclusive Fashion Show
Birmingham
----- Start of picture text -----
Agenda
----- End of picture text -----
supported, and included throughout the process.
while breaking down societal barriers.
to walk the runway, showing the world that beauty comes in all forms.
from around the world, creating opportunities for connection, selfexpression, and confidence building.
For stakeholders and supporters, it underscored the importance of PIPUK’s work in advocacy, education, and fostering community. With ongoing support, we aim to expand these opportunities and continue to raise awareness for Poland Syndrome.
We extend our deepest gratitude to:
Inclusive Fashion Show
Birmingham
supported, and included throughout the process.
Agenda while breaking down societal barriers.
to walk the runway, showing the world that beauty comes in all forms.
from around the world, creating opportunities for connection, selfexpression, and confidence building.
We extend our deepest gratitude to:
and belief in the Poland Syndrome community.
a reality.
- Lily Alfonso for bringing her designs and vision to life for our models.
and advocate for inclusivity.
time.
Our first medical
symposium
Trustee Impact Report Professor Peter Bannister
On both a global and a national level, Poland Syndrome is a condition with very low awareness amongst the Therefore, and healthcare professionals alike, with even less understanding and agreement on how to support patients, who may present during childhood or in some cases, due to the low familiarity mentioned above, later in life.
Amongst Poland Syndrome advocates, it has been known for some time that the leading country for the awareness of the condition has been Italy who some years ago established a national patient register. This is what Agenda led to PIP-UK setting up the first global registry to improve awareness and support. Therefore the significance of the first PIP-UK Medical Symposium held online on Wednesday 7th June 2023 around the topic “Plan Early Treatment for Children with
Poland Syndrome” which featured leading clinicians from both the UK and Italy, cannot be understated.
The panellists were:
Dr Andrea Jester – Birmingham Women’s and Children’s NHS Foundation Trust
Prof Andrew Hart – Royal Childrens Hospital (Glasgow Royal Infirmary) Dr Kim Daybell – NHS Junior Doctor and PIP-UK Ambassador Dr Sondra Butterworth – Community Health Psychologist, RareQol Prof Michele Torre – Gaslini Children’s Hospital, Genoa Dr Nunzio Catena – Gaslini Children’s Hospital, Genoa Prof Llaria Baldelli – University of Genoa Prof Laura Mori – University of Genoa
Our first medical
symposium
Trustee Impact Report Professor Peter Bannister
The format included several rapid-fire presentations on patient management followed by a moderated panel discussion. What was most striking about the discussed was the open debate between UK clinicians and their Italian counterparts across highly emotive subjects for the patients and families, most notably the differing views on offering aesthetic surgery to children diagnosed at a young age. On a healthcare delivery level, there was a valuable exchange of information between the two countries given the relatively higher level of mental health support in the UK compared with the greater level of clinical agreement in Italy. In Agenda terms of wider impact, the Symposium was delivered live online so that many members of the Poland Syndrome community could attend and input questions to the panellists.
Further impact has been achieved by publishing plain English reports on the PIP-UK website and a reply is available on our youtube channel. Since this Symposium a second event has been held with further clinicians joining the expert discussion and focusing on specific patient treatment decisions that were highlighted in the first panel discussion. A further symposium took place in 2024 which we look forward to reporting on next year.
You can read the reports on the symposium here and watch the symposium replay here.
Poland Syndrome community register 2023-2024
Real-world data from registries and other real-world evidence sources remain a fertile ground of opportunity for advocacy groups and biopharma companies to accelerate rare disease research and better characterize and manage these diseases, their progression and treatment.
OBJECTIVES
To answer this challenge, PIP-UK was focused on ensuring that the data were collected in a standardized way, met regulatory requirements and aligned with their vision to build global collaboration, with the technology as a nucleus for patients to convene and share their experiences.
METHODS Agenda PIP-UK started working with Pulse Infoframe in 2021 to launch the Poland Syndrome Community Register. Utilising the Pulse Platform, PIP-UK were able to deploy the registry within 4 months with a recruitment target of 100 participants in the first 3 months. Common data elements to form the central hub for data to be characterized and curated were created. PIP-UK and Pulse addressed the regulatory requirements that would be needed for drug development by ensuring that the data are collected in a platform that adheres to FDA and EMA data standards and further provides confidence to participants that their data are stored safely due to compliance with HIPAA and GDPR.
RESULTS SO FAR
The registry currently has 366 active participants enrolled into the platform where 60 of them are under the age of 10. The majority of participants are female and right side affected. The majority of participants are diagnosed between ages 0-9 years but a significant number aged 10 and over with the latest reported diagnosis aged 60+.
Poland Syndrome community register
2023-2024
Poland Syndrome community register
2023
The journey of the Poland Syndrome Community Register has been nothing short of inspiring. This initiative, powered by a passionate team of volunteers, researchers, and advocates, is breaking new ground in understanding and addressing Poland Syndrome. Since its inception, the team has worked tirelessly to transform a shared vision into tangible progress, making 2024 a pivotal year for the register.
2024 marked a major turning point for the register. In August, we gained full access to the data collected from hundreds of participants—data that provides invaluable insights into the lived experiences of those affected by Poland Syndrome. Armed with this information, Dr. Kim Daybell, Dr. Sebastian Tuille, and Mac McNichol have begun the meticulous process of analysing the registry data. Their dedication and expertise are paving the way for groundbreaking discoveries that will inform future research and improve patient outcomes. Agenda
One of the most significant achievements of 2024 has been securing ethical approval for our chest wall surgery research. This critical milestone sets the stage for an ambitious pilot study in 2025, focusing on the long-term outcomes of chest surgeries, including latissimus dorsi (lat flap) procedures. By working closely with our community, we aim to assemble a pilot group that reflects the diverse experiences of those living with Poland Syndrome, ensuring the research is as comprehensive and impactful as possible.
Looking ahead, 2025 will be a year of action and determination. The focus will shift to making the chest wall surgery research a reality, despite the challenges of a difficult funding landscape. The team is committed to pushing forward, collaborating with patients, families, and medical professionals to design and execute this groundbreaking study.
Poland Syndrome community register
2023
At the heart of this effort is the unwavering dedication of our volunteers and researchers. Their commitment to understanding the long-term effects of surgeries and providing the community with accurate, evidence-based information is the driving force behind this initiative. The results of this research will empower individuals with Poland Syndrome to make informed decisions about their care and pave the way for better surgical outcomes in the future.
The progress we’ve made would not have been possible without the tireless efforts of our team and the generosity of our supporters. To the donors who have believed in this mission from the beginning, we extend our deepest gratitude. Your contributions have enabled us to take critical steps forward, transforming dreams of research into a growing reality.
As we enter 2025, we remain steadfast in our commitment to advancing Poland Syndrome research. The road ahead will require Agenda resilience, creativity, and collaboration as we are encountering a funding shortfall. The foundation we’ve built gives us confidence that meaningful breakthroughs are within reach.
PIP-UK in Scotland
Expanding Our Reach: Supporting the Poland Syndrome Community in Scotland
2024 marked an exciting and significant year for PIP-UK as we expanded our support to Poland Syndrome families in Scotland with the official launch of our Scotland Branch. This milestone was driven by the passion and dedication of our incredible volunteer, Jen Mellin, who has worked tirelessly to raise awareness, fund raise and create a sense of community for those affected by Poland Syndrome in Scotland.
One of the highlights of the year was our awareness initiatives at the Royal Hospital for Children in Glasgow with the Office for Rare Conditions and a takeover dare on Rare Revolution Magazines social Agenda
media.
In February, we proudly took part in Rare Disease Day initiatives at the hospital, taking part in an awareness event that provided vital information and resources to families, healthcare professionals, and hospital staff. This event was the first of many aimed at increasing knowledge and understanding of Poland Syndrome within Scotland’s healthcare sector, ensuring better support for those affected.
Jen Mellin's unwavering commitment to the cause has been nothing short of inspirational. Through her relentless efforts, she has built connections, hosted meetups, and spearheaded fundraising activities, helping to establish a strong Poland Syndrome community in Scotland. Her work has ensured that individuals and families no longer feel isolated and can access much-needed support.
PIP-UK in Scotland
While 2023/24 laid the foundation for our Scotland Branch, 2024 promises even more growth and impact. We have already celebrated Poland Syndrome Awareness Day at the hospital and had the privilege of visiting the Scottish Parliament with our young ambassador, Jack— but more about that in next year’s report!
We extend our deepest gratitude to Jen Mellin, Angeline O’Connor, Trustee Robbie Woods and family, and everyone in Scotland who has supported this expansion. Your dedication is changing lives, and we can’t wait to see what we achieve together in the years to come.
PIP-UK in the Midlands
2023 marked a significant milestone for PIP-UK as we launched our Midlands branch, thanks to the dedication of volunteers Paul and Rachel Preston. Over the past year, we have expanded our reach, hosted impactful events, and received vital support from local leaders. This report highlights key events, community engagement, and the growing support for Poland Syndrome awareness in Birmingham.
Key Events & Community Engagement
Christmas Themed Coffee Morning
Hosted at Birmingham Children’s Hospital, this festive gathering brought together families, healthcare professionals, and charities, including PIP-UK. Attendees enjoyed carols, face painting, and an Agenda illustration workshop, fostering a warm and supportive atmosphere.
Key Outcomes:
-
Strengthened relationships with hospital staff and other charities supporting children with upper limb differences.
-
Provided a platform for families to connect, reducing isolation.
-
Raised awareness of Poland Syndrome among new audiences.
This event also led to an important connection—Paul and Rachel met James Godsall and his family, who later went on to fundraise for PIPUK.
PIP-UK in the Midlands
Picnic in the Park at Warley Woods
A vibrant, family-friendly event that brought together individuals affected by Poland Syndrome, their loved ones, and the broader community. PIP-UK set up an awareness stall, offering information, support, and a space for connection.
Key Outcomes:
-
Community Engagement: Strengthened PIP-UK’s presence in Birmingham by connecting with families and individuals eager to learn about Poland Syndrome.
-
Volunteer Involvement: Demonstrated the power of grassroots efforts in raising awareness, led by Paul and Rachel Preston.
-
Educational Outreach: Attendees had the opportunity to ask questions, share personal experiences, and gain insights into the condition.
Agenda The success of this event reinforced the importance of in-person community gatherings in fostering a sense of belonging and support.
Earth Day Event
PIP-UK’s Earth Day Event in Birmingham combined environmental education with community building. Held near the town clock, families participated in activities designed to nurture a connection with nature while engaging in meaningful conversations about Poland Syndrome.
Key Outcomes:
-
Environmental Awareness & Wellbeing: Families learned about native plants, engaged in rock painting, and planted seedlings to take home, promoting sustainability and mindfulness.
-
Intergenerational Participation: Attendees ranged from young children to older adults, showcasing the power of inclusive community events.
-
Stronger Community Bonds: The relaxed atmosphere allowed for deeper connections between attendees, reducing isolation among those affected by Poland Syndrome.
This event highlighted the importance of integrating well-being initiatives with awareness efforts, offering a holistic approach to community support.
PIP-UK in the Midlands
Fundraising & Growing Support
James Godsall’s Half-Marathon Fundraiser
Inspired by his son Benjamin, James Godsall took on the Birmingham Black Country Half Marathon to raise funds for PIP-UK. His story resonated with many:
“In November 2018, we welcomed our wonderful, beautiful, funny, kind, and sometimes infuriating son Benjamin to the world. We also started a journey that led us to learning about Poland Syndrome. Shortly after he was born, it became apparent that something wasn’t quite right. Benjamin didn’t look symmetrical in his chest area, and one of his hands looked to me to be smaller and somewhat conjoined. Most worryingly, no one seemed to know what or why this was. A few weeks later, thanks to the amazing Birmingham Children’s Hospital, we had an answer. Benjamin has Poland Syndrome.”
James’ dedication raised essential funds and increased visibility for Poland Syndrome awareness.
PIP-UK in the Midlands
Political & Community Support
We received significant backing from Birmingham leaders, further establishing PIP-UK’s Midlands branch:
-
Cllr John Cotton, Leader of Birmingham City Council, took time out of his busy schedule to support Poland Syndrome awareness.
-
MP Preet Kaur Gill lent support to our medical clinics, advocating for better resources.
-
Cllr Sam Forsyth also joined efforts to promote awareness.
This level of engagement demonstrates growing recognition of Poland Syndrome within Birmingham’s political and healthcare landscape.
The Role of Paul Preston & His Special Friend from the North Pole
Paul Preston played a key role in multiple fundraising initiatives, including hosting festive events with Father Christmas. These events not only raised funds but also brought joy to families affected by Poland Syndrome.
Conclusion
The launch of PIP-UK’s Midlands branch has been a resounding success, thanks to the unwavering commitment of volunteers, fundraisers, and community leaders. Through impactful events, increased visibility, and vital political support, we are making a meaningful difference in the lives of those affected by Poland Syndrome.
As we look ahead, we remain committed to expanding our outreach, strengthening our partnerships, and continuing to support families in Birmingham and beyond.
Thank you to everyone who has contributed to this journey—we couldn’t do it without you! Special thanks to Paul and Rachel Preston.
Poland Syndrome Clinic
Established in 2021, the Poland Syndrome Clinic at Birmingham Women and Childrens Hospital has gone from strength to strength. The doctors are building a specialism in Poland Syndrome diagnosis and treatment for Poland Syndrome which is the first of its kind in the UK.
Our mission to provide essential appointments and tests for families in need has been made possible through the support of Birmingham Children's Hospital. They have generously offered their invaluable NHS Agenda time to make this vision a reality, but they looked to us to guide and support families in finding the clinic. Without hesitation, we embraced this opportunity with enthusiasm. This in the only clinic in the UK for children with Poland Syndrome, families are travelling hundreds of miles to get the answers and medical assistance that cannot be found anywhere else.
Since 2021, we've had the privilege of overseeing ten clinics, providing essential appointments and tests for 75+ families. But our work extends beyond these appointments; we offer unwavering assistance in securing appointments through correspondence with GPs, and we stand by these families before, during, and after their clinic visits.
We are still working with the hospital and the local MP to find a pathway to fund this clinics resources long term, its proving very difficult. The waiting list is now over 12 months long due the overwhelming need. While the community rallied to raise funds to support the clinic services, we now face a substantial financial gap. We have worked tirelessly to apply for funding since 2021 for this clinic and continue to do so, whilst also working on community fundraising campaigns.
Comfort
With Artist Lois Blackburn
The Comfort Project – Celebrating Poland Syndrome Awareness Day 2023
In celebration of Poland Syndrome Awareness Day 2023, PIP-UK partnered with artist Lois Blackburn to deliver a unique and deeply moving workshop, The Comfort Project. This one-off event provided a space for women and teenagers—including members of the Trans and Non-Binary community—to explore and express their personal stories about their breasts through art and storytelling.
The workshop aimed to shine a light on the experiences of women in Agenda the Poland Syndrome community, many of whom have long felt isolated in their journey. Through guided discussions and creative expression, participants worked together to create embroidered artwork that will form part of a larger quilt, set to be exhibited across the UK.
Lois Blackburn, a talented artist and a member of the Poland Syndrome community, led the workshop with both vulnerability and strength. Her reflections on the experience highlight the power of storytelling in healing and connection:
"Thanks to the Poland Syndrome charity PIP-UK, awareness and support for people with this rare condition is improving. Through the organisation, I can now say with confidence that I have Poland Syndrome."
For Lois, meeting another woman with the condition for the first time was life-changing. One participant shared:
"It wasn’t the Poland’s – it was trying to hide it that was the problem."
Comfort
With Artist Lois Blackburn
This sentiment resonated throughout the session, as attendees reflected on their personal journeys—from the challenges of puberty to the realities of motherhood and aging. Throughout the workshop, participants used textiles, embroidery, and visual storytelling to give form to their narratives. The quilt they created stands as a testament to their collective experience—an artistic legacy that will help others understand and connect with the realities of living with Poland Syndrome.
Lois spoke about the significance of this work: Agenda "As an artist, I often speak about the power of sharing stories across different ages, backgrounds, and strengths—sharing experiences with people, feeling less alone. Taking a leap of faith and revealing my own story was not easy, but as one of the driving points behind this whole project, I can say that I am proud I have.
For those who wish to learn more about The Comfort Project and its impact, the full report is available here. PIP-UK extends heartfelt thanks to Lois Blackburn for her vision and leadership, and to every participant who courageously shared their story. This project is just one example of how creative expression can empower, heal, and bring a community together.
Our Impact 2024
----- Start of picture text -----
Agenda
----- End of picture text -----
6 POLAND SYNDROME CLINICS
30 CHILDREN & FAMILIES VISITED THE CLINIC FOR TREATMENT & DIAGNOSIS
Our Community Fundraisers
This year saw more people than ever raising money in the community in new and exciting ways, helping us expand our reach and impact. A special mention goes to our youngest fundraiser and new Young Ambassador, Charlie, who was born with Poland Syndrome.
Charlie has already overcome many challenges, including learning to write with his left hand. The support of the PIP-UK community has meant so much to him, and now he is determined to give back so that we can continue helping others like him.
For Poland Syndrome Awareness Day (30th April) 2023, Charlie took on an inspiring challenge—completing 25 laps of his local football pitch, covering a total of 5 miles. Through his dedication, he raised an Agenda incredible £844 to support PIP-UK!
A huge thank you to Darragh Mallon and Portaferry GAC, who raised an incredible £6,823 in support of PIP-UK! Darragh, who was diagnosed with Poland Syndrome at birth, had never
met anyone else with the condition in person. After discovering PIP-UK and attending online meetings, he found a sense of community and support that helped him embrace his diagnosis. Determined to give back, he launched a fundraiser to raise awareness and support vital Poland Syndrome clinics for children in the UK. His efforts will have a lasting impact, ensuring that more families receive the support and information they need. Darragh said “I myself have struggled with my hand and chest in the past but hurling has been an outlet for me from such a young age. I was never seen as the kid with the small hand or weird chest. It was just me and I was seen as just Darragh, Not Darragh with the small hand. I have never let my hand or chest stop me in doing things but this day is to hopefully highlight that if there are kids out there, they excel in anything they put their mind to.” Thank you, Darragh! You are an inspiration and a true support to the community.
We would also like to extend our heartfelt thanks to all our amazing fundraisers this year, including Michelle Ridley and Buttons Nursery, Holly and Tom Noonan, James Godsall, Paul and Rachel Preston, Tony Moore and Elemental Games, Laura Bird, Carol Tierney, David Adejuyigbe . Your generosity and commitment make a real difference to the Poland Syndrome community.
Our Community Fundraisers
This year saw more people than ever raising money in the community in new and exciting ways, helping us expand our reach and impact. A special mention goes to our youngest fundraiser and new Young Ambassador, Charlie, who was born with Poland Syndrome.
Charlie has already overcome many challenges, including learning to write with his left hand. The support of the PIP-UK community has meant so much to him, and now he is determined to give back so that we can continue helping others like him.
For Poland Syndrome Awareness Day (30th April) 2023, Charlie took on an inspiring challenge—completing 25 laps of his local football pitch, covering a total of 5 miles. Through his dedication, he raised an Agenda incredible £844 to support PIP-UK!
Our Community Fundraisers
A huge thank you to Darragh Mallon and Portaferry GAC, who raised an incredible £6,823 in support of PIP-UK!
Darragh, who was diagnosed with Poland Syndrome at birth, had never Agenda met anyone else with the condition in person. After discovering PIP-UK and attending online meetings, he found a sense of community and support that helped him embrace his diagnosis. Determined to give back, he launched a fundraiser to raise awareness and support vital Poland Syndrome clinics for children in the UK. His efforts will have a lasting impact, ensuring that more families receive the support and information they need. Darragh said “I myself have struggled with my hand and chest in the past but hurling has been an outlet for me from such a young age. I was never seen as the kid with the small hand or weird chest. It was just me and I was seen as just Darragh, Not Darragh with the small hand. I have never let my hand or chest stop me in doing things but this day is to hopefully highlight that if there are kids out there, they excel in anything they put their mind to.” Thank you, Darragh! You are an inspiration and a true support to the community.
We would also like to extend our heartfelt thanks to all our amazing fundraisers this year, including Michelle Ridley and Buttons Nursery, Holly and Tom Noonan, James Godsall, Paul and Rachel Preston, Tony Moore and Elemental Games, Laura Bird, Carol Tierney, David Adejuyigbe . Your generosity and commitment make a real difference to the Poland Syndrome community.
Our Grant
Funders
2023-2024: A Year of Unprecedented Support
This year, PIP-UK was fortunate to receive support from a diverse and broad range of grant foundations, enabling us to meet the increasing demand for our services and support our growing community. The generosity of these organisations has been instrumental in expanding our reach, ensuring that more individuals and families affected by Poland Syndrome receive the help, guidance, and connection they need.
None of our work would be possible without the kind support of these Agenda giving organisations, and we extend our heartfelt thanks to: The National Lottery, Maryland Trust, Eveson Trust, Grimmitt Trust, RPJ Energy Solutions, Spiegel Foundation, The Souter Family Trust, Manchester Guardian Society, and Co-op Local. Their commitment to our cause has made a profound difference in the lives of our beneficiaries.
PIP Parents information Portal - Operating as PIP-UK Poland Syndrome Support and Network
Trustee's Report - General Information
Registered Charity Number: 1188941 Flat 3, School Court, Meyer Street, Stockport, SK3 8JE
Trustees:
Angel Scott-Bottoms (Chair)
Paul Preston (Chair Appointed 2 October 2023)
Dr Peter Bannister (Trustee Appointed 13 February 2022) Julie Erasmus (Secretary Appointed 03 October 2022) Josh Spiegel (Trustee Appointed 30 July 2023)
Matthew Walton (Treasurer Appointed 24 January 2024) Agenda Liz Mckenna (Resigned September 2024Trustee) Victoria Bedwell (Resigned March 2024 Treasurer)
Shirley Proctor (Resigned September 2024 Trustee) Robbie Woods (Resigned September 2024 Trustee) Kira Aspland (Resigned 21 February 2024Trustee )
Our purpose
To relieve those effected by Poland Syndrome in particular but not exclusively by:
-
Promoting improvements in care for people who are affected by Poland
-
syndrome.
-
Undertaking research into effects of Poland Syndrome and disseminating
-
the useful results thereof
-
Increasing awareness of Poland Syndrome amongst health professionals
-
and the general public
-
The provision of free advice and assistance to persons effected by Poland
-
Syndrome and their families
Structure, Governance and Management
PIP-UK is a registered charity number 1188941, governed by the Charities Act 2006. The charity is a Charitable Incorporated Organisation registered on 7 April 2020 under the CIO Governing Document. New trustees are appointed by the serving trustees, considering the skills required by the board.
Activities
121 advice and support for families affected by Poland Syndrome. Advocacy services with health care professionals. Wellbeing services and family support services. Hosting events that bring the community together.
PIP Parents information Portal - Operating as PIP-UK Poland Syndrome
Support and Network
Trustee's Report - General Information
Registered Charity Number: 1188941 Flat 3, School Court, Meyer Street, Stockport, SK3 8JE
Public Benefit
The Trustees confirm that they referred to the Charity Commission's general guidance on public benefit when reviewing the Charity's aims and objectives for the year. Public benefit has been achieved as per the activities outlined in the 'Our Achievements' section of this report. Agenda
Financial Review
We have sufficient funds to support the planned projects and running costs and we will be working on diversifying our fundraising to support our growth and vision for the Poland Syndrome Community by increasing the community fundraising and reaching out to other grant providers.
Reserves Policy
The policy is designed to set out the process of determining the appropriate level of reserves that PIP-UK is required to hold in order to meet its
requirements, while ensuring we are meeting the needs of our service users as best as possible.
This means ensuring we can meet our basic running costs, periods of
funding and other uncertainty, while ensuring money is available to allow us to meet our charitable aims.
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Charity No. 1188941
Trustees' Report and Unaudited Accounts
31 March 2024
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5 PIP Parents Information Portal Contents
| Pages | |
|---|---|
| Trustees' Annual Report | 2 |
| Independent Examiner's Report | 3 |
| Statement of Financial Activities | 4 |
| Balance Sheet | 5 |
| Notes to the Accounts | 6 to 12 |
| Detailed Statement of Financial Activities | 13 to 14 |
Page 1
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Trustees Annual Report
The trustees present their report with the unaudited financial statements of the charity for the year ended 31 March 2024.
REFERENCE AND ADMINISTRATIVE DETAILS
Charity No. 1188941
Trustees
The following trustees served during the year:
K. Aspland (Resigned 21 February 2024) P. Bannister V. Bedwell (Resigned 30 March 2024) J. Erasmus E. McKenna (Resigned 2 October 2023) P. Preston S.B. Proctor (Resigned 2 October 2023) A. Scott-Bottoms (Resigned 2 October 2023) J. Spiegel M. Walton R. Woods
Accountants
Solutions Accountancy & Bookkeeping Ltd 1 The Mews Little Brunswick Street Huddersfield HD1 5JL
Statement of trustees' responsibilities in relation to the financial statements
The charity trustees are responsible for preparing a trustees' annual report and financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).
The trustees are responsible for keeping proper accounting records that disclose with reasonable accuracy at any time the financial position of the charity and to enable them to ensure that the financial statements comply with the Charities Act 2011, the applicable Charities (Accounts and Reports) Regulations, and the provisions of the Trust deed. The Trustees are also responsible for safeguarding the assets of the charity and hence taking reasonable steps for the prevention and detection of fraud and other irregularities.
Signed on behalf of the charity's trustees
P. Preston Trustee 30 January 2025
Page 2
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5 PIP Parents Information Portal Independent Examiners Report
Independent Examiner's Report to the trustees of PIP Parents Information Portal
I report to the trustees on my examination of the financial statements of PIP Parents Information Portal for the year ended 31 March 2024.
Responsibilities and basis of report
As the charity's trustees you are responsible for the preparation of the financial statements in accordance with the requirements of the Charities Act 2011 ('the Act').
I report in respect of my examination of the charity's financial statements carried out under section 145 of the 2011 Act and in carrying out my examination I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.
Independent examiner's statement
I have completed my examination. I can confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:
-
the accounting records were not kept in respect of the charity as required by section 130 of the Act; or
-
the financial statements do not accord with those records; or
-
the financial statements do not comply with the applicable requirements concerning the form and content of financial statements set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the financial statements give a 'true and fair' view which is not a matter considered as part of an independent examination.
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the financial statements to be reached.
CPAA Solutions Accountancy & Bookkeeping Ltd 1 The Mews
Little Brunswick Street Huddersfield
HD1 5JL 30 January 2025
Page 3
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5 PIP Parents Information Portal
Statement of Financial Activities
for the year ended 31 March 2024
| Notes Income and endowments from: Donations and legacies 3 Other trading activities 4 Investments 5 Total Expenditure on: Raising funds 6 Charitable activities 7 Other 8 Total Net gains on investments Net income/(expenditure) 9 Transfers between funds Net income/(expenditure) before other gains/(losses) Other gains and losses Net movement in funds Reconciliation of funds: Total funds brought forward Total funds carried forward |
Unrestricted funds |
Restricted funds |
Total funds | Total funds | |
|---|---|---|---|---|---|
| 2024 | 2024 | 2024 | 2023 | ||
| £ | £ | £ | £ | ||
| 29,934 | 28,320 | 58,254 | 43,093 | ||
| 2,319 | - | 2,319 | 1,357 | ||
| 41 | - | 41 | 5 | ||
| 32,294 | 28,320 | 60,614 | 44,455 | ||
| 4,268 | - | 4,268 | 1,022 | ||
| 3,676 | - | 3,676 | 9,523 | ||
| 19,251 | 24,020 | 43,271 | 37,845 | ||
| 27,195 | 24,020 | 51,215 | 48,390 | ||
| - | - | - | - | ||
| 5,099 | 4,300 | 9,399 | (3,935) | ||
| - | - | - | - | ||
| 5,099 | 4,300 | 9,399 | (3,935) | ||
| 5,099 | 4,300 | 9,399 | (3,935) | ||
| 5,725 | 3,700 | 9,425 | 13,360 | ||
| 10,824 | 8,000 | 18,824 | 9,425 | ||
Page 4
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Balance Sheet
at 31 March 2024
| Charity No. 1188941 Fixed assets Tangible assets 11 Current assets Debtors 12 Cash at bank and in hand Creditors:Amount falling due within one year 13 Net current assets Total assets less current liabilities Net assets excluding pension asset or liability Total net assets The funds of the charity Restricted funds 14 Restricted income funds Unrestricted funds 14 General funds Reserves 14 Total funds |
2024 £ 191 191 50 19,363 19,413 (780) 18,633 18,824 18,824 18,824 8,000 8,000 10,824 10,824 18,824 |
2023 £ 287 |
|---|---|---|
| 287 3,005 7,074 |
||
| 10,079 (941) |
||
| 9,138 9,425 |
||
| 9,425 | ||
| 9,425 | ||
| 3,700 | ||
| 3,700 5,725 |
||
| 5,725 | ||
| 9,425 |
Approved by the trustees on 30 January 2025
And signed on their behalf by:
P. Preston Trustee 30 January 2025
Page 5
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Notes to the Accounts
for the year ended 31 March 2024
- 1 Accounting policies
Basis of preparation
The financial statements have been prepared in accordance with Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic if Ireland (FRS 102) issued on 16 July 2014 and the Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland (FRS 102) and the Charities Act 2011.
Change in basis of accounting or to previous accounts
There has been no change to the accounting policies (valuation rules and method of accounting) since last year and no changes have been made to accounts for previous years.
Fund accounting
Unrestricted funds These are available for use at the discretion of the trustees in furtherance of the general objects of the charity.
Designated funds These are unrestricted funds earmarked by the trustees for particular purposes. Revaluation funds These are unrestricted funds which include a revaluation reserve representing the restatement of investment assets at their market values.
Restricted funds These are available for use subject to restrictions imposed by the donor or through terms of an appeal.
Income
Recognition of Income is included in the Statement of Financial Activities (SoFA) when the charity income becomes entitled to, and virtually certain to receive, the income and the amount of the income can be measured with sufficient reliability.
Income with related Where income has related expenditure the income and related expenditure is expenditure reported gross in the SoFA.
Donations and Voluntary income received by way of grants, donations and gifts is included in the legacies the SoFA when receivable and only when the Charity has unconditional entitlement to the income.
Volunteer help The value of any volunteer help received is not included in the accounts. Investment income This is included in the accounts when receivable.
Page 6
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5 PIP Parents Information Portal
Notes to the Accounts
Expenditure
Recognition of Expenditure is recognised on an accruals basis. Expenditure includes any VAT which expenditure cannot be fully recovered, and is reported as part of the expenditure to which it relates. Expenditure on These comprise the costs associated with attracting voluntary income, fundraising raising funds trading costs and investment management costs. Expenditure on These comprise the costs incurred by the Charity in the delivery of its activities and charitable activities services in the furtherance of its objects, including the making of grants and governance costs. Governance costs These include those costs associated with meeting the constitutional and statutory requirements of the Charity, including any audit/independent examination fees, costs linked to the strategic management of the Charity, together with a share of other administration costs.
Other expenditure These are support costs not allocated to a particular activity.
Taxation
The charity is exempt from tax on its charitable activities.
Tangible fixed assets and depreciation
Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life:
Fixtures, Fittings and 25% Straight Line Equipment
Trade and other debtors
Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.
Trade and other creditors
Short term creditors are measured at the transaction price. Other creditors and provisions are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are normally recognised at their settlement amount after allowing for any trade discounts due.
Pension costs
The charity operates a defined contribution plan for its employees. A defined contribution plan is a pension plan under which the charity pays fixed contributions into a separate entity. Once the contributions have been paid the charity has no further payments obligations. The contributions are recognised as expenses when they fall due. Amounts not paid are shown in accruals in the balance sheet. The assets of the plan are held separately from the charity in independently administered funds.
Page 7
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5 PIP Parents Information Portal
Notes to the Accounts
- 2 Statement of Financial Activities - prior year
| 2 Statement of Financial Activities - prior year |
||||
|---|---|---|---|---|
| Income and endowments from: Donations and legacies Other trading activities Investments Total Expenditure on: Raising funds Charitable activities Other Total Net income Net income before other gains/(losses) Other gains and losses: Net movement in funds Reconciliation of funds: Total funds brought forward Total funds carried forward 3 Income from donations and legacies Donations Grants receivable 4 Income from other trading activities Fund raising events |
Unrestricted £ 23,006 6,928 29,934 |
Unrestricted funds 2023 £ 27,393 1,357 5 28,755 1,022 9,523 25,845 36,390 (7,635) (7,635) (7,635) 13,360 5,725 Restricted £ - 28,320 28,320 Unrestricted £ 2,319 2,319 |
Restricted funds 2023 £ 15,700 - - 15,700 - - 12,000 12,000 3,700 3,700 3,700 - 3,700 Total 2024 £ 23,006 35,248 58,254 Total 2024 £ 2,319 2,319 |
Total funds 2023 £ 43,093 1,357 5 |
| 44,455 1,022 9,523 37,845 |
||||
| 48,390 | ||||
| (3,935) | ||||
| (3,935) | ||||
| (3,935) 13,360 |
||||
| 9,425 | ||||
| Total 2023 £ 12,393 30,700 |
||||
| 43,093 | ||||
| Total 2023 £ 1,357 |
||||
| 1,357 |
Page 8
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Notes to the Accounts
5 Income from investments
| 5 | Income from investments | ||||
|---|---|---|---|---|---|
| Unrestricted | Total | Total | |||
| 2024 | 2023 | ||||
| £ | £ | £ | |||
| Bank interest receivable | 41 | 41 | 5 | ||
| 41 | 41 | 5 | |||
| 6 | Expenditure on raising funds | ||||
| Unrestricted | Total | Total | |||
| 2024 | 2023 | ||||
| £ | £ | £ | |||
| Costs of generating voluntary | |||||
| income | |||||
| Donations | 90 | 90 | 203 | ||
| Grants receivable | - | - | 43 | ||
| Fundraising trading costs | |||||
| Fund raising events | 4,178 | 4,178 | 776 | ||
| 4,268 | 4,268 | 1,022 | |||
| 7 | Expenditure on charitable activities | ||||
| Unrestricted | Total | Total | |||
| 2024 | 2023 | ||||
| £ | £ | £ | |||
| Expenditure on charitable | |||||
| activities | |||||
| 2,000 | 2,000 | 8,630 | |||
| Governance costs | |||||
| 1,676 | 1,676 | 893 | |||
| 3,676 | 3,676 | 9,523 | |||
| 8 | Other expenditure | ||||
| Unrestricted | Restricted | Total | Total | ||
| 2024 | 2023 | ||||
| £ | £ | £ | £ | ||
| Employee costs | 13,350 | 23,020 | 36,370 | 33,849 | |
| Motor and travel costs | 1,649 | 1,000 | 2,649 | 1,844 | |
| Amortisation, depreciation, | |||||
| impairment, profit/loss on | 96 | - | 96 | 96 | |
| disposal of fixed assets | |||||
| General administrative costs | 3,124 | - | 3,124 | 1,796 | |
| Legal and professional costs | 1,032 | - | 1,032 | 260 | |
| 19,251 | 24,020 | 43,271 | 37,845 |
Page 9
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5 PIP Parents Information Portal
Notes to the Accounts
| 9 Net income/(expenditure) before transfers This is stated after charging: Depreciation of owned fixed assets 10 Staff costs Salaries and wages Pension costs No employee received emoluments in excess of £60,000. 11 Tangible fixed assets Cost or revaluation At 1 April 2023 At 31 March 2024 Depreciation and impairment At 1 April 2023 Depreciation charge for the year At 31 March 2024 Net book values At 31 March 2024 At 31 March 2023 12 Debtors Trade debtors Other debtors 13 Creditors: amounts falling due within one year Other taxes and social security Accruals |
2024 £ 96 2024 33,965 795 34,760 2024 £ - 50 50 2024 £ - |
Fixtures, Fittings and Equipment £ 383 383 96 96 192 191 287 |
2023 £ 96 2023 32,178 826 |
|---|---|---|---|
| 33,004 | |||
| Total £ 383 |
|||
| 383 | |||
| 96 96 |
|||
| 192 | |||
| 191 | |||
| 287 | |||
| 2023 £ 3,000 5 |
|||
| 3,005 | |||
| 2023 £ 162 |
|||
| 780 | 779 | ||
| 780 | 941 |
Page 10
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Notes to the Accounts
14 Movement in funds
| Restricted funds: Restricted income funds: Eveson Trust Manchester Guardian Society Main Grants - National Lottery Grimmitt Trust Donation for Scotland Forever Manchester CDL Fund The Souter Charitable Trust Total Unrestricted funds: General funds Designated funds: Maryland Trust Total Total funds |
At 1 April 2023 - - - - - 700 3,000 3,700 5,725 - - 9,425 |
Incoming resources (including other gains/losses ) £ 5,000 2,000 19,720 600 1,000 - - 28,320 27,294 5,000 5,000 60,614 |
Resources expended £ (5,000) (2,000) (11,720) (600) (1,000) (700) (3,000) (24,020) (22,195) (5,000) (5,000) (51,215) |
At 31 March 2024 £ - - 8,000 - - - - |
|---|---|---|---|---|
| 8,000 | ||||
| 10,824 - |
||||
| - | ||||
| 18,824 |
Purposes and restrictions in relation to the funds:
| Restricted funds: | |
|---|---|
| Eveson Trust | Living Well with PS |
| Manchester Guardian Society | Living Well with PS |
| Main Grants - National | Living Well with PS |
| Lottery | |
| Grimmitt Trust | Living Well with PS |
| Donation for Scotland | Living Well with PS |
| Forever Manchester CDL | Living Well with PS |
| Fund | |
| The Souter Charitable Trust | Clinic Delivery |
| Designated funds: | |
| Maryland Trust | Core Costs |
Page 11
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Notes to the Accounts
15 Analysis of net assets between funds
| 15 Analysis of net assets between funds | |||
|---|---|---|---|
| Fixed assets Net current assets 16 Reconciliation of net debt Cash and cash equivalents Net debt |
At 1 April 2023 £ |
Unrestricted funds £ 191 18,633 18,824 Cash flows £ |
Total £ 191 18,633 |
| 18,824 | |||
| At 31 March 2024 £ |
|||
| 7,074 | 12,289 | 19,363 | |
| 7,074 7,074 |
12,289 12,289 |
19,363 | |
| 19,363 | |||
| 17 Commitments Operating lease commitments Annual commitments under non-cancellable operating leases 2024 Land and buildings £ Operating leases with expiry date: Pension commitments The pension cost charge to the charity amounted to: |
are as follows: 2024 Other £ 2024 £ 795 |
2023 Land and buildings £ |
2023 Other £ 2023 £ 826 |
Page 12
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5 PIP Parents Information Portal
Detailed Statement of Financial Activities
for the year ended 31 March 2024
| Income and endowments from: Donations and legacies Donations Grants receivable Other trading activities Fund raising events Investments Bank interest receivable Total income and endowments Expenditure on: Costs of generating donations and legacies Donations Grants receivable Costs of other trading activities Fund raising events Total of expenditure on raising funds Charitable activities Governance costs Total of expenditure on charitable activities Employee costs Salaries/wages Pension costs Staff training Motor and travel costs Travel and subsistence |
Unrestricte d funds 2024 £ 23,006 6,928 29,934 2,319 2,319 41 41 32,294 90 - 90 4,178 4,178 4,268 2,000 2,000 1,676 1,676 3,676 10,945 795 1,610 13,350 1,649 |
Restricted funds 2024 £ - 28,320 28,320 - - - - 28,320 - - - - - - - - - - - 23,020 - - 23,020 1,000 |
Total funds 2024 £ 23,006 35,248 58,254 2,319 2,319 41 41 60,614 90 - 90 4,178 4,178 4,268 2,000 2,000 1,676 1,676 3,676 33,965 795 1,610 36,370 2,649 |
Total funds 2023 £ 12,393 30,700 |
|---|---|---|---|---|
| 43,093 | ||||
| 1,357 | ||||
| 1,357 | ||||
| 5 | ||||
| 5 | ||||
| 44,455 203 43 |
||||
| 246 | ||||
| 776 | ||||
| 776 | ||||
| 1,022 8,630 |
||||
| 8,630 | ||||
| 893 | ||||
| 893 | ||||
| 9,523 32,178 826 845 |
||||
| 33,849 | ||||
| 1,844 |
Page 13
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Detailed Statement of Financial Activities
| General administrative costs, including depreciation and amortisation Depreciation of Fixtures, Fittings and Equipment Bank charges Equipment repairs and maintenance General insurances Postage and couriers Software, IT support and related costs Stationery and printing Subscriptions Sundry expenses Telephone, fax and broadband Legal and professional costs Consultancy fees Other legal and professional costs Total of expenditure of other costs Total expenditure Net gains on investments Net income/(expenditure) Net income/(expenditure) before other gains/(losses) Other Gains Net movement in funds Reconciliation of funds: Total funds brought forward Total funds carried forward |
1,649 96 181 75 227 468 623 1,023 152 110 265 3,220 1,000 32 1,032 19,251 27,195 - 5,099 5,099 - 5,099 5,725 10,824 |
1,000 - - - - - - - - - - - - - - 24,020 24,020 - 4,300 4,300 - 4,300 3,700 8,000 |
2,649 96 181 75 227 468 623 1,023 152 110 265 3,220 1,000 32 1,032 43,271 51,215 - 9,399 9,399 - 9,399 9,425 18,824 |
1,844 |
|---|---|---|---|---|
| 96 59 19 227 270 622 169 - 398 32 |
||||
| 1,892 | ||||
| 200 60 |
||||
| 260 | ||||
| 37,845 | ||||
| 48,390 - |
||||
| (3,935) | ||||
| (3,935) - |
||||
| (3,935) | ||||
| 13,360 | ||||
| 9,425 |
Page 14
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Charity No. 1188941
Trustees' Report and Unaudited Accounts
31 March 2024
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5 PIP Parents Information Portal Contents
| Pages | |
|---|---|
| Trustees' Annual Report | 2 |
| Independent Examiner's Report | 3 |
| Statement of Financial Activities | 4 |
| Balance Sheet | 5 |
| Notes to the Accounts | 6 to 12 |
| Detailed Statement of Financial Activities | 13 to 14 |
Page 1
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Trustees Annual Report
The trustees present their report with the unaudited financial statements of the charity for the year ended 31 March 2024.
REFERENCE AND ADMINISTRATIVE DETAILS
Charity No. 1188941
Trustees
The following trustees served during the year:
K. Aspland (Resigned 21 February 2024) P. Bannister V. Bedwell (Resigned 30 March 2024) J. Erasmus E. McKenna (Resigned 2 October 2023) P. Preston S.B. Proctor (Resigned 2 October 2023) A. Scott-Bottoms (Resigned 2 October 2023) J. Spiegel M. Walton R. Woods
Accountants
Solutions Accountancy & Bookkeeping Ltd 1 The Mews Little Brunswick Street Huddersfield HD1 5JL
Statement of trustees' responsibilities in relation to the financial statements
The charity trustees are responsible for preparing a trustees' annual report and financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).
The trustees are responsible for keeping proper accounting records that disclose with reasonable accuracy at any time the financial position of the charity and to enable them to ensure that the financial statements comply with the Charities Act 2011, the applicable Charities (Accounts and Reports) Regulations, and the provisions of the Trust deed. The Trustees are also responsible for safeguarding the assets of the charity and hence taking reasonable steps for the prevention and detection of fraud and other irregularities.
Signed on behalf of the charity's trustees
P. Preston Trustee 30 January 2025
Page 2
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5 PIP Parents Information Portal Independent Examiners Report
Independent Examiner's Report to the trustees of PIP Parents Information Portal
I report to the trustees on my examination of the financial statements of PIP Parents Information Portal for the year ended 31 March 2024.
Responsibilities and basis of report
As the charity's trustees you are responsible for the preparation of the financial statements in accordance with the requirements of the Charities Act 2011 ('the Act').
I report in respect of my examination of the charity's financial statements carried out under section 145 of the 2011 Act and in carrying out my examination I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.
Independent examiner's statement
I have completed my examination. I can confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:
-
the accounting records were not kept in respect of the charity as required by section 130 of the Act; or
-
the financial statements do not accord with those records; or
-
the financial statements do not comply with the applicable requirements concerning the form and content of financial statements set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the financial statements give a 'true and fair' view which is not a matter considered as part of an independent examination.
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the financial statements to be reached.
CPAA Solutions Accountancy & Bookkeeping Ltd 1 The Mews
Little Brunswick Street Huddersfield
HD1 5JL 30 January 2025
Page 3
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5 PIP Parents Information Portal
Statement of Financial Activities
for the year ended 31 March 2024
| Notes Income and endowments from: Donations and legacies 3 Other trading activities 4 Investments 5 Total Expenditure on: Raising funds 6 Charitable activities 7 Other 8 Total Net gains on investments Net income/(expenditure) 9 Transfers between funds Net income/(expenditure) before other gains/(losses) Other gains and losses Net movement in funds Reconciliation of funds: Total funds brought forward Total funds carried forward |
Unrestricted funds |
Restricted funds |
Total funds | Total funds | |
|---|---|---|---|---|---|
| 2024 | 2024 | 2024 | 2023 | ||
| £ | £ | £ | £ | ||
| 29,934 | 28,320 | 58,254 | 43,093 | ||
| 2,319 | - | 2,319 | 1,357 | ||
| 41 | - | 41 | 5 | ||
| 32,294 | 28,320 | 60,614 | 44,455 | ||
| 4,268 | - | 4,268 | 1,022 | ||
| 3,676 | - | 3,676 | 9,523 | ||
| 19,251 | 24,020 | 43,271 | 37,845 | ||
| 27,195 | 24,020 | 51,215 | 48,390 | ||
| - | - | - | - | ||
| 5,099 | 4,300 | 9,399 | (3,935) | ||
| - | - | - | - | ||
| 5,099 | 4,300 | 9,399 | (3,935) | ||
| 5,099 | 4,300 | 9,399 | (3,935) | ||
| 5,725 | 3,700 | 9,425 | 13,360 | ||
| 10,824 | 8,000 | 18,824 | 9,425 | ||
Page 4
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Balance Sheet
at 31 March 2024
| Charity No. 1188941 Fixed assets Tangible assets 11 Current assets Debtors 12 Cash at bank and in hand Creditors:Amount falling due within one year 13 Net current assets Total assets less current liabilities Net assets excluding pension asset or liability Total net assets The funds of the charity Restricted funds 14 Restricted income funds Unrestricted funds 14 General funds Reserves 14 Total funds |
2024 £ 191 191 50 19,363 19,413 (780) 18,633 18,824 18,824 18,824 8,000 8,000 10,824 10,824 18,824 |
2023 £ 287 |
|---|---|---|
| 287 3,005 7,074 |
||
| 10,079 (941) |
||
| 9,138 9,425 |
||
| 9,425 | ||
| 9,425 | ||
| 3,700 | ||
| 3,700 5,725 |
||
| 5,725 | ||
| 9,425 |
Approved by the trustees on 30 January 2025
And signed on their behalf by:
P. Preston Trustee 30 January 2025
Page 5
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Notes to the Accounts
for the year ended 31 March 2024
- 1 Accounting policies
Basis of preparation
The financial statements have been prepared in accordance with Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic if Ireland (FRS 102) issued on 16 July 2014 and the Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland (FRS 102) and the Charities Act 2011.
Change in basis of accounting or to previous accounts
There has been no change to the accounting policies (valuation rules and method of accounting) since last year and no changes have been made to accounts for previous years.
Fund accounting
Unrestricted funds These are available for use at the discretion of the trustees in furtherance of the general objects of the charity.
Designated funds These are unrestricted funds earmarked by the trustees for particular purposes. Revaluation funds These are unrestricted funds which include a revaluation reserve representing the restatement of investment assets at their market values.
Restricted funds These are available for use subject to restrictions imposed by the donor or through terms of an appeal.
Income
Recognition of Income is included in the Statement of Financial Activities (SoFA) when the charity income becomes entitled to, and virtually certain to receive, the income and the amount of the income can be measured with sufficient reliability.
Income with related Where income has related expenditure the income and related expenditure is expenditure reported gross in the SoFA.
Donations and Voluntary income received by way of grants, donations and gifts is included in the legacies the SoFA when receivable and only when the Charity has unconditional entitlement to the income.
Volunteer help The value of any volunteer help received is not included in the accounts. Investment income This is included in the accounts when receivable.
Page 6
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5 PIP Parents Information Portal
Notes to the Accounts
Expenditure
Recognition of Expenditure is recognised on an accruals basis. Expenditure includes any VAT which expenditure cannot be fully recovered, and is reported as part of the expenditure to which it relates. Expenditure on These comprise the costs associated with attracting voluntary income, fundraising raising funds trading costs and investment management costs. Expenditure on These comprise the costs incurred by the Charity in the delivery of its activities and charitable activities services in the furtherance of its objects, including the making of grants and governance costs. Governance costs These include those costs associated with meeting the constitutional and statutory requirements of the Charity, including any audit/independent examination fees, costs linked to the strategic management of the Charity, together with a share of other administration costs.
Other expenditure These are support costs not allocated to a particular activity.
Taxation
The charity is exempt from tax on its charitable activities.
Tangible fixed assets and depreciation
Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life:
Fixtures, Fittings and 25% Straight Line Equipment
Trade and other debtors
Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.
Trade and other creditors
Short term creditors are measured at the transaction price. Other creditors and provisions are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are normally recognised at their settlement amount after allowing for any trade discounts due.
Pension costs
The charity operates a defined contribution plan for its employees. A defined contribution plan is a pension plan under which the charity pays fixed contributions into a separate entity. Once the contributions have been paid the charity has no further payments obligations. The contributions are recognised as expenses when they fall due. Amounts not paid are shown in accruals in the balance sheet. The assets of the plan are held separately from the charity in independently administered funds.
Page 7
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5 PIP Parents Information Portal
Notes to the Accounts
- 2 Statement of Financial Activities - prior year
| 2 Statement of Financial Activities - prior year |
||||
|---|---|---|---|---|
| Income and endowments from: Donations and legacies Other trading activities Investments Total Expenditure on: Raising funds Charitable activities Other Total Net income Net income before other gains/(losses) Other gains and losses: Net movement in funds Reconciliation of funds: Total funds brought forward Total funds carried forward 3 Income from donations and legacies Donations Grants receivable 4 Income from other trading activities Fund raising events |
Unrestricted £ 23,006 6,928 29,934 |
Unrestricted funds 2023 £ 27,393 1,357 5 28,755 1,022 9,523 25,845 36,390 (7,635) (7,635) (7,635) 13,360 5,725 Restricted £ - 28,320 28,320 Unrestricted £ 2,319 2,319 |
Restricted funds 2023 £ 15,700 - - 15,700 - - 12,000 12,000 3,700 3,700 3,700 - 3,700 Total 2024 £ 23,006 35,248 58,254 Total 2024 £ 2,319 2,319 |
Total funds 2023 £ 43,093 1,357 5 |
| 44,455 1,022 9,523 37,845 |
||||
| 48,390 | ||||
| (3,935) | ||||
| (3,935) | ||||
| (3,935) 13,360 |
||||
| 9,425 | ||||
| Total 2023 £ 12,393 30,700 |
||||
| 43,093 | ||||
| Total 2023 £ 1,357 |
||||
| 1,357 |
Page 8
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Notes to the Accounts
5 Income from investments
| 5 | Income from investments | ||||
|---|---|---|---|---|---|
| Unrestricted | Total | Total | |||
| 2024 | 2023 | ||||
| £ | £ | £ | |||
| Bank interest receivable | 41 | 41 | 5 | ||
| 41 | 41 | 5 | |||
| 6 | Expenditure on raising funds | ||||
| Unrestricted | Total | Total | |||
| 2024 | 2023 | ||||
| £ | £ | £ | |||
| Costs of generating voluntary | |||||
| income | |||||
| Donations | 90 | 90 | 203 | ||
| Grants receivable | - | - | 43 | ||
| Fundraising trading costs | |||||
| Fund raising events | 4,178 | 4,178 | 776 | ||
| 4,268 | 4,268 | 1,022 | |||
| 7 | Expenditure on charitable activities | ||||
| Unrestricted | Total | Total | |||
| 2024 | 2023 | ||||
| £ | £ | £ | |||
| Expenditure on charitable | |||||
| activities | |||||
| 2,000 | 2,000 | 8,630 | |||
| Governance costs | |||||
| 1,676 | 1,676 | 893 | |||
| 3,676 | 3,676 | 9,523 | |||
| 8 | Other expenditure | ||||
| Unrestricted | Restricted | Total | Total | ||
| 2024 | 2023 | ||||
| £ | £ | £ | £ | ||
| Employee costs | 13,350 | 23,020 | 36,370 | 33,849 | |
| Motor and travel costs | 1,649 | 1,000 | 2,649 | 1,844 | |
| Amortisation, depreciation, | |||||
| impairment, profit/loss on | 96 | - | 96 | 96 | |
| disposal of fixed assets | |||||
| General administrative costs | 3,124 | - | 3,124 | 1,796 | |
| Legal and professional costs | 1,032 | - | 1,032 | 260 | |
| 19,251 | 24,020 | 43,271 | 37,845 |
Page 9
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5 PIP Parents Information Portal
Notes to the Accounts
| 9 Net income/(expenditure) before transfers This is stated after charging: Depreciation of owned fixed assets 10 Staff costs Salaries and wages Pension costs No employee received emoluments in excess of £60,000. 11 Tangible fixed assets Cost or revaluation At 1 April 2023 At 31 March 2024 Depreciation and impairment At 1 April 2023 Depreciation charge for the year At 31 March 2024 Net book values At 31 March 2024 At 31 March 2023 12 Debtors Trade debtors Other debtors 13 Creditors: amounts falling due within one year Other taxes and social security Accruals |
2024 £ 96 2024 33,965 795 34,760 2024 £ - 50 50 2024 £ - |
Fixtures, Fittings and Equipment £ 383 383 96 96 192 191 287 |
2023 £ 96 2023 32,178 826 |
|---|---|---|---|
| 33,004 | |||
| Total £ 383 |
|||
| 383 | |||
| 96 96 |
|||
| 192 | |||
| 191 | |||
| 287 | |||
| 2023 £ 3,000 5 |
|||
| 3,005 | |||
| 2023 £ 162 |
|||
| 780 | 779 | ||
| 780 | 941 |
Page 10
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Notes to the Accounts
14 Movement in funds
| Restricted funds: Restricted income funds: Eveson Trust Manchester Guardian Society Main Grants - National Lottery Grimmitt Trust Donation for Scotland Forever Manchester CDL Fund The Souter Charitable Trust Total Unrestricted funds: General funds Designated funds: Maryland Trust Total Total funds |
At 1 April 2023 - - - - - 700 3,000 3,700 5,725 - - 9,425 |
Incoming resources (including other gains/losses ) £ 5,000 2,000 19,720 600 1,000 - - 28,320 27,294 5,000 5,000 60,614 |
Resources expended £ (5,000) (2,000) (11,720) (600) (1,000) (700) (3,000) (24,020) (22,195) (5,000) (5,000) (51,215) |
At 31 March 2024 £ - - 8,000 - - - - |
|---|---|---|---|---|
| 8,000 | ||||
| 10,824 - |
||||
| - | ||||
| 18,824 |
Purposes and restrictions in relation to the funds:
| Restricted funds: | |
|---|---|
| Eveson Trust | Living Well with PS |
| Manchester Guardian Society | Living Well with PS |
| Main Grants - National | Living Well with PS |
| Lottery | |
| Grimmitt Trust | Living Well with PS |
| Donation for Scotland | Living Well with PS |
| Forever Manchester CDL | Living Well with PS |
| Fund | |
| The Souter Charitable Trust | Clinic Delivery |
| Designated funds: | |
| Maryland Trust | Core Costs |
Page 11
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Notes to the Accounts
15 Analysis of net assets between funds
| 15 Analysis of net assets between funds | |||
|---|---|---|---|
| Fixed assets Net current assets 16 Reconciliation of net debt Cash and cash equivalents Net debt |
At 1 April 2023 £ |
Unrestricted funds £ 191 18,633 18,824 Cash flows £ |
Total £ 191 18,633 |
| 18,824 | |||
| At 31 March 2024 £ |
|||
| 7,074 | 12,289 | 19,363 | |
| 7,074 7,074 |
12,289 12,289 |
19,363 | |
| 19,363 | |||
| 17 Commitments Operating lease commitments Annual commitments under non-cancellable operating leases 2024 Land and buildings £ Operating leases with expiry date: Pension commitments The pension cost charge to the charity amounted to: |
are as follows: 2024 Other £ 2024 £ 795 |
2023 Land and buildings £ |
2023 Other £ 2023 £ 826 |
Page 12
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5 PIP Parents Information Portal
Detailed Statement of Financial Activities
for the year ended 31 March 2024
| Income and endowments from: Donations and legacies Donations Grants receivable Other trading activities Fund raising events Investments Bank interest receivable Total income and endowments Expenditure on: Costs of generating donations and legacies Donations Grants receivable Costs of other trading activities Fund raising events Total of expenditure on raising funds Charitable activities Governance costs Total of expenditure on charitable activities Employee costs Salaries/wages Pension costs Staff training Motor and travel costs Travel and subsistence |
Unrestricte d funds 2024 £ 23,006 6,928 29,934 2,319 2,319 41 41 32,294 90 - 90 4,178 4,178 4,268 2,000 2,000 1,676 1,676 3,676 10,945 795 1,610 13,350 1,649 |
Restricted funds 2024 £ - 28,320 28,320 - - - - 28,320 - - - - - - - - - - - 23,020 - - 23,020 1,000 |
Total funds 2024 £ 23,006 35,248 58,254 2,319 2,319 41 41 60,614 90 - 90 4,178 4,178 4,268 2,000 2,000 1,676 1,676 3,676 33,965 795 1,610 36,370 2,649 |
Total funds 2023 £ 12,393 30,700 |
|---|---|---|---|---|
| 43,093 | ||||
| 1,357 | ||||
| 1,357 | ||||
| 5 | ||||
| 5 | ||||
| 44,455 203 43 |
||||
| 246 | ||||
| 776 | ||||
| 776 | ||||
| 1,022 8,630 |
||||
| 8,630 | ||||
| 893 | ||||
| 893 | ||||
| 9,523 32,178 826 845 |
||||
| 33,849 | ||||
| 1,844 |
Page 13
Docusign Envelope ID: BE6DFFB4-D823-45D4-94B2-D7F0892886D5
PIP Parents Information Portal
Detailed Statement of Financial Activities
| General administrative costs, including depreciation and amortisation Depreciation of Fixtures, Fittings and Equipment Bank charges Equipment repairs and maintenance General insurances Postage and couriers Software, IT support and related costs Stationery and printing Subscriptions Sundry expenses Telephone, fax and broadband Legal and professional costs Consultancy fees Other legal and professional costs Total of expenditure of other costs Total expenditure Net gains on investments Net income/(expenditure) Net income/(expenditure) before other gains/(losses) Other Gains Net movement in funds Reconciliation of funds: Total funds brought forward Total funds carried forward |
1,649 96 181 75 227 468 623 1,023 152 110 265 3,220 1,000 32 1,032 19,251 27,195 - 5,099 5,099 - 5,099 5,725 10,824 |
1,000 - - - - - - - - - - - - - - 24,020 24,020 - 4,300 4,300 - 4,300 3,700 8,000 |
2,649 96 181 75 227 468 623 1,023 152 110 265 3,220 1,000 32 1,032 43,271 51,215 - 9,399 9,399 - 9,399 9,425 18,824 |
1,844 |
|---|---|---|---|---|
| 96 59 19 227 270 622 169 - 398 32 |
||||
| 1,892 | ||||
| 200 60 |
||||
| 260 | ||||
| 37,845 | ||||
| 48,390 - |
||||
| (3,935) | ||||
| (3,935) - |
||||
| (3,935) | ||||
| 13,360 | ||||
| 9,425 |
Page 14