OpenCharities

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

2022-03-31-accounts

THE POLYCYSTIC KIDNEY DISEASE CHARITY

Report of the Board of Trustees and Accounts – 1 April 2021 to 31 March 2022

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

ANNUAL REPORT AND ACCOUNTS 2021-2022

CONTENTS

REFERENCE AND ADMINISTRATIVE INFORMATION ........................................................................... 3 TRUSTEES ANNUAL REPORT & DIRECTORS’ REPORT ...................................................................... 4 WELCOME FROM THE CHAIR ............................................................................................................ 4 OBJECTIVES AND AIMS ...................................................................................................................... 5 About PKD ..................................................................................................................................... 5 Charitable objects ......................................................................................................................... 6 Our objectives and activities ......................................................................................................... 6 PERFORMANCE AND ACHIEVEMENTS DURING 2021-22 .................................................................... 7 Ongoing impact of COVID-19 ......................................................................................................... 7 Research activities during 2021-22 ................................................................................................ 8 Support services for people, carers and families affected by PKD .................................................. 9 Survey of the PKD Community to assess performance ................................................................. 13 PKD awareness activities ............................................................................................................. 14 Community involvement in the work that we do ......................................................................... 17 Community fundraising ............................................................................................................... 17 Grant fundraising ........................................................................................................................ 18 Pro bono support ........................................................................................................................ 18 2022-23 plans ................................................................................................................................. 18 STRUCTURE, GOVERNANCE AND MANAGEMENT ............................................................................ 19 Constitution ................................................................................................................................ 19 Trustees ...................................................................................................................................... 19 Governance and administration .................................................................................................. 19 Risk Management ....................................................................................................................... 19 Fundraising ................................................................................................................................. 20 FINANCIAL REVIEW ......................................................................................................................... 20 Independent Examiner's Report to the Trustees of the Polycystic Kidney Disease Charity ............ 22 STATEMENT OF FINANCIAL ACTIVITIES - 1 April 2021 TO 31 MARCH 2022 ...................................... 23 BALANCE SHEET AT 31 MARCH 2022 ............................................................................................... 24 NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022 ............................ 26

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 2/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

REFERENCE AND ADMINISTRATIVE INFORMATION

Principal address and registered office:

86-90 Paul Street London EC2A 4NE

Tel: 020 7387 0543 Email: info@pkdcharity.org.uk pkdcharity.org.uk

Ms Sanela Becar (Lay Member) Professor Daniel Gale Dr Richard Sandford Professor John Sayer Dr Manish Sinha Professor David Wheeler

Chief Executive

Ms Tess Harris

Polycystic Kidney Disease Charity

(Also known as the PKD Charity) Registered charity in England and Wales Number 1160970 Registered charity in Scotland Number SC047730 A company limited by guarantee Registered company in England and Wales Number 9486245

Patrons

Professor Albert Ong Dr Anand Saggar Dr Richard Sandford Professor Patricia Wilson

Professional advisors

Bankers

Directors* and Trustees who served during the year and to the date of this

report

Mr Alan Greenberg (Chair) Mr Jordan Adams Mr Idriz Adedoja (Treasurer, appointed Jul 2022) Mr Raj Johal Ms Rebecca Murphy-Peers Ms Jade Raymond (resigned Mar 2022) Mr Jon Rees Mrs Karen Stapleton Mr Adrian Tinsley Mr Nicholas Tracey Professor Patricia Wilson

Research Advisory Board

CAF Bank Ltd 25 Kings Hill Avenue West Malling ME 19 4JQ

Accountants PEM Salisbury House Station Road Cambridge, CB1 2LA

Independent accounts examiner Charles Pickin Fellow of Institute of Chartered Accountants in England and Wales Harrison Jasper Ltd Florance Lane, Groombridge, TN3 9SH

Professor Patricia Wilson (Chair)

*The directors of the charitable company (the charity) are its trustees for the purpose of charity law.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 3/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

TRUSTEES ANNUAL REPORT & DIRECTORS’ REPORT

The Trustees, who are also directors of the Charity for the purpose of the Companies Act, present their annual report and financial statements of the Charity for the year ended 31 March 2022. The accounts comply with the Charities Act 2011, Companies Act 2006 and the trust deed, and follow the recommendations in Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019).

The Trustees confirm that they have complied with the duty in section 17 of the Charities Act 2011 to have due regard to the public benefit guidance published by the Charity Commission in determining the activities undertaken by the Charity.

WELCOME FROM THE CHAIR

2021-2022 continued to be a challenging time for the Charity with the continued impact of COVID19. We were still unable to deliver face-face ‘in person’ events and we experienced a small reduction of income compared to the previous year.

I am pleased to say we were able to navigate the continuation of the pandemic effectively and we delivered a full set of services to our community online, and our income was not impacted as much as the general Charity sector.

During the year we developed a new ambitious 3-year strategic plan to deliver significant benefits for our community. A major focus is to increase research and this year we began promotion of the top 10 Research Priorities from the ADPKD Priority Partnership that were determined last year.

I am also really excited by the launch of the first ever PKD/KRUK jointly funded PKD research awards round. We believe our collaboration with KRUK will accelerate PKD research and an initial £537k worth of research awards for 3 programmes were made under this partnership.

Over the next few pages, you can read more about the Charity’s activities during 2021-22. We are unable to do our work without the generosity of those who donate money or give time: including patients and families affected by PKD, their colleagues and friends; the bereaved and those who give in memory of those who die from PKD; the healthcare professionals and researchers; our partners and foundations; our trustees and staff.

Alan Greenberg, Chair, Board of Trustees 28 December 2022

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Page 4/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

OBJECTIVES AND AIMS

The Polycystic Kidney Disease (PKD) Charity is the only UK charity solely dedicated to improving the lives of children, adults, families, and carers affected by polycystic kidney disease (PKD). The Charity was formed in 2000 by a PKD patient and a genetics consultant. Throughout the past 20 years, most trustees and staff have been either PKD patients or family members.

About PKD

PKD is an incurable, systemic genetic condition that causes kidney failure and damages other organs. There are two forms of PKD: autosomal dominant polycystic kidney disease (ADPKD), the most common inherited kidney disease and fourth cause of kidney failure worldwide; and the rare autosomal recessive polycystic kidney disease (ARPKD).

Of the 800,000 babies born a year in the UK, we estimate that 800 – over 2 a day - could have ADPKD (based on 1 in 1,000 prevalence) and 20-40 could have ARPKD (based on 1 in 20-40,000 prevalence). As an inherited condition, ADPKD affects not only the individual but also their immediate family. It’s a lifelong condition that can start to present even before birth.

In 2020, approximately 7,000 adults with PKD were receiving treatment for kidney failure -1 in 10 of all adults in the UK on dialysis or with a kidney transplant.

ADPKD – the more common form of PKD

ADPKD causes multiple fluid-filled cysts to develop, grow and multiply from conception in both kidneys resulting in kidney growth and progressive kidney failure. In many patients, cysts also form in the liver, pancreas and other organs. Both kidneys can grow immensely, up to 100 times normal size (see image on left of ADPKD kidney compared with normal kidney). The brain and heart can also be damaged. Individuals with ADPKD will often have directly affected family members, parents and siblings, sometimes over several generations.

Most patients with ADPKD will have complete kidney failure by age 60 and will need kidney replacement therapy (KRT) to stay alive – this involves either dialysis or (if feasible) a kidney transplant. Some people will require nephrectomies (kidney removal) due to organ size and have frequent disabling, painful cyst infections that may need surgical intervention. Over 20 adults annually will also need a liver transplant owing to massively cystic livers. Some families are prone to brain aneurysms, which can fatally rupture if not discovered and treated. Acute and chronic pain is common throughout life. As ADPKD progresses, individuals experience complications such as high blood pressure, infections, bleeding, bowel and bone disorders, gout and kidney stones. Read more about ADPKD on the PKD Charity website.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 5/36

Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2022

ARPKD is rare and often diagnosed during pregnancy. Unfortunately, 1 in 3 babies will die in the first week of life owing to the rapid growth of cystic kidneys preventing lung development. The babies who survive sometimes experience early kidney and liver failure. They may need life-saving dialysis before transplant and about a third have impaired growth during childhood. Some children

may need kidney or liver transplants in later life. Despite this, many children do survive to adulthood with mild forms of ARPKD, although their kidneys and livers can be impaired. ARPKD patients frequently have very high blood pressure and are prone to liver-related problems such as bile duct infections and enlarged spleens. Read more about ARPKD on the PKD Charity website.

Charitable objects

To promote health and to relieve those persons suffering from or affected by PKD with a view to improving their conditions of life, in particular but not exclusively by:

Our objectives and activities

Research

Our aim is to support and fund ADPKD and ARPKD research in the UK. As a small charity, we focus on funding small research projects up to £15,000 each and contributing towards PhD studentships (future capacity building). However, in 2021, the trustees agreed to contribute £151,000 of restricted and unrestricted reserves towards a joint research programme in partnership with Kidney Research UK. To date, since 2008, we have awarded over £650,000 to research.

We publish details of funded research and outcomes on the charity website and include in our regular eNews and printed newsletter.

We participate in PKD research groups and networks in the UK and internationally.

Information, awareness, and advocacy

ADPKD is the most common inherited kidney disease, yet few people have heard of it and awareness amongst GPs is known to be particularly low. ARPKD is rare and diagnosis/prognosis is a challenge, especially in pregnancy.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 6/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

We produce and publish evidence-based information about PKD in collaboration with medical experts, available online and in print. We have PIF TICK accreditation and are designated as a ‘trusted health care information creator’ by the Patient Information Forum.

We organise frequent educational events on all aspects of PKD, with medical and health professional speakers, aimed at helping patients/carers be more knowledgeable, feel more confident and able to cope.

We represent the views and voices of patients, families and carers to UK healthcare professionals, researchers, the NHS, policy makers and the media. We educate pharmaceutical firms with an interest in PKD to ensure that they understand patients’ experiences and needs. Where appropriate, we work in partnership with other charities and umbrella groups, to raise awareness about PKD and its impact on individuals and families.

Support

Being diagnosed with PKD is usually a shock, even if there are known family members with the condition. People report feeling isolated and overwhelmed by the health implications and have concerns for their own future, their children and family members.

We want everyone affected by PKD to have the best quality of life, despite the complications and sometimes life-threatening nature of PKD.

We support patients and carers at every stage of their life with PKD. We provide a range of community services offering practical and emotional support, information and advice including: a helpline run by people with direct experience of PKD, educational events, individual befriending, webchat/messaging, meetups, workshops, and moderated online Facebook groups.

PERFORMANCE AND ACHIEVEMENTS DURING 2021-22

We achieved the main aims we set for 2021-2022:

Ongoing impact of COVID-19

In April 2021, the UK was in the ‘second wave’ of COVID-19. A third wave of the new Delta variant began in July 2021 during which deaths and hospitalisations was lower than with the first two waves, attributed to the vaccination programme. Public health restrictions were gradually lifted and ended by August 2021. However, in early December 2021, the Omicron variant arrived causing record infection levels, and new restrictions were put in place by the UK government. These restrictions were all removed by March 2022.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 7/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

Many in our PKD community remained classified as ‘Clinically Extremely Vulnerable’ (CEV) with some being offered additional vaccination doses, up to five in total. All face-to-face educational events and many fundraising activities were on hold again. However, we were able to continue working remotely and delivering our services using online technology such as Teams and Zoom.

Research activities during 2021-22

Joint research funding round in partnership with Kidney Research UK

In September 2021, the first-ever jointly funded PKD research awards round was launched. By collaborating with Kidney Research UK, we aimed to accelerate PKD research. The awards round invited researchers to apply for grants. For ADPKD research, we asked them to focus on the top research priorities for ADPKD. Applications for ARPKD were also welcomed.

Kidney Research UK managed the 2-stage grant application process which concluded in March 2022. 14 applications were received and reviewed by a panel of experts and patients. Three research projects were funded with grants worth a total of £537,000, with the PKD Charity contributing £150,000:

Other grants awarded

The PKD Research Advisory Board recommended three projects for funding, which were approved by the trustees.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 8/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

autosomal dominant polycystic kidney disease on risk of rupture of intracranial aneurysms ’.

Promotion of the top ADPKD research priorities

The chief executive presented the results of the ADPKD Priority Setting Partnership (PSP) at these virtual meetings:

In September 2021, the PSP manuscript was submitted to the BMJ Open. (It was published in May 2022. Link here.)

Other research activities

We participated in and supported UK and relevant international research activities:

Support services for people, carers and families affected by PKD

During 2021-22, we continued to support our community through remote service delivery and frequently updated health and COVID-19 information, using online channels and platforms such as

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 9/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

Zoom, Teams and Facebook.

Online support group meetups

During the year, we held 28 online support group calls via Zoom to either chat and share experiences, or to discuss popular topics such as tolvaptan (a disease-modifying drug), polycystic liver disease and nephrectomy (kidney removal) at which a volunteer spoke about their own personal experience.

“Thanks for organising the chat on nephrectomy. Have been at many patient group meetings over the years but usually only a small number of us have PKD & we never get around to talking about nephrectomy. It was great to meet other PKD patients all focused on the same topic. Specially interesting to hear from people about their personal experiences.”.

As last year, despite the interest, attendance numbers are typically about 60% of those registered, with about 7 people attending each event on average.

Telephone support including helpline

Our dedicated 0300 telephone helpline was available for those feeling worried or emotional or needing information. The number of callers reverted to previous years with one caller per day on average. Monday is usually the busiest day. Out of hours calls are recorded by an answer service ensuring those who left a message had their calls returned.

Information/Support events and webinars for patients and their families

We delivered 3 ADPKD information days by Zoom on:

the event was organised by PKD Charity and attracted 500 attendees from 70 countries (100 from UK).

We experimented switching from a webinar, ‘listen-only’ mode to interactive meeting mode. With careful moderation of those attending and gathering questions in advance, we were able to record the presenters and manage the live Q&A without issues. Feedback was positive:

“Thank you for the excellent event today. The fact that one of your speakers has personal experience of the living donation and transplant process was powerful.”

“All was extremely helpful. I thought the range and flow of speakers worked well and I enjoyed

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 10/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

hearing the lived experience at the end.”

“I learnt something from every speaker. I was particularly interested in PKD and Covid and found the findings of diets and PKD very interesting. The psychological pressure session was very good too.”

Many commented on the benefits of being able to attend without travelling. However, many also told us that 6 hours online was too long, and they would prefer shorter information days in future. We took this into account when planning future events.

We organised an online event for ARPKD parents and families . Six guest speakers gave an overview of ARPKD, including liver complications, dialysis, and transplantation.

Despite 43 registering, the attendance was just 14. However, our ARPKD community is very small, and most are young working parents juggling caring for very sick children and possibly other siblings.

50% of attendees said it was their first ARPKD event and most felt more able to manage ARPKD, were more positive

about it and their knowledge of ARPKD increased.

“Overall, the event was great and although I would love it to be in person it was a nice introduction as my first event as I didn't know what to expect. Thanks so much for organising, it really was invaluable.”

We held 4 evening webinars/live Q&A meetings . These were jointly presented by PKDC staff and guest speakers:

Nearly 319 (60% increase over last year) attended the webinars and between 65-80% were very satisfied.

The talks from the information events and webinars were recorded and are available on our website and YouTube channel. Each topic recorded is also included on an appropriate page on our website to enrich written content.

During the year, we also shared information about events organised by other charities on topics such

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 11/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

as COVID-19 and benefits.

We are very grateful to the UK healthcare professionals for volunteering their time on weekend evenings and Saturdays to present to and answer questions from our community.

Living Well with PKD Workshop

We commissioned a Clinical Kidney Psychologist and Psychotherapist to create and deliver a unique series of online workshops for the PKD Charity on ‘Living Well with PKD’. These explored pain, anxiety, diagnosis and relationships. The workshops were held over 90 minutes via a Zoom meeting with capacity limited to 10.

One ADPKD workshop was held in December 2021 (the start of the series) and 6 attended. Two smaller workshops were held for ARPKD families with 8 attending. Overall, feedback was very positive.

Facebook groups

We manage and moderate 3 private UK-only Facebook groups with approximately 3,000 members. We are fortunate to have the support of trained volunteers who assist staff with moderation and peer support. COVID-19 related posts declined during the year compared with the previous year as people reverted to their daily issues of managing PKD. We have noticed that many people are experiencing delays in seeing specialists or are rarely seeing them in-person, which is concerning.

Telephone befriending service

We continued to offer a personalised telephone befriending service, with trained volunteers with lived experience of PKD. This is a service for patient and family members, enabling them to develop an ongoing relationship with a volunteer befriender.

Health information for patients and families

During the year we continued to update and draft new information. However, as in previous years, we struggled with the availability of healthcare professionals to review drafts owing to the impact of COVID-19.

We regularly updated the COVID-19 blogs in line with Government and other health guidance.

We reviewed and updated our information production processes and applied to the Patient Information for PIF TICK accreditation (achieved in May 2022).

This information quality mark will enable us to improve the distribution of our fact sheets, in particular to GPs via online directories.

PKD website

The website underwent a major technical and content update and went live in September 2021. Visitor numbers increased 19% in the period from 1/10/2021 to 31/3/2022, compared with the same

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 12/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

period the previous year.

Survey of the PKD Community to assess performance

We published a survey in Autumn 2021 to assess the charity’s performance in meeting beneficiaries’ needs, the community’s wellbeing, and identify unmet needs. It was published online and posted to 3000 households in our Autumn Newsletter.

The survey was based on previous surveys, the last being in 2017. We consulted on the draft with colleagues at Genetic Alliance UK and piloted it with members of our community.

305 responded from all regions of the UK and with ages ranging from 1 to over 80, with the majority between 50-59.

Overall, we were satisfied that our services were valued and beneficial:

The free text comments reflected high levels of community satisfaction:

“Whenever I have reached out and asked questions, I have always been pointed in the right direction for the advice I need whether it be via the PKD website or being pointed to my consultant to ask questions etc. I feel very fortunate to have come across this charity as before

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 13/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

I found it, I did feel very alone and very worried about the disease, but now I know there are other people I can connect with who understand it makes it a little easier to comprehend.”

“I know it's been a long time since I was diagnosed with PKD but when I attended the information day everyone made me feel so welcome and I gained so much from that day and felt less scared about my outcome especially meeting and hearing from other PKD patients. To this day the team keep everyone updated on everything we need to know and being part of the FB group and the Group chat page has been even more helpful.”

“I am extremely thankful for the charity. I have always felt supported and heard. As a mother that is young, I have often received inadequate care for my daughter and felt that I am often shrugged off. The PKD Charity has never made me feel this way, they are accepting and kind and always make you feel at ease. When I have a question, they are quick to respond and either help me themselves or point me in the right direction of someone else if needed.”

PKD awareness activities

Awareness

Through social media posts on our Facebook page, groups, Twitter, LinkedIn, Instagram and affiliate social channels, we continued to raise awareness of PKD, kidney health and our services. Facebook and Twitter reach increased significantly to over 275,000 and 13,900 respectively.

Facebook was the dominant social media channel. Our community always enjoys stories of transplant/organ donation and PKD patient stories.

Popular posts included Warren’s story of a life-or-death decision to remove both of his enormous kidneys – he shared his story with us and also via public media including the BBC. It was estimated that his kidneys weighed 35 kg after removal, the world’s largest recorded.

Warren is now on dialysis and hoping to receive a transplant.

We issued 2 printed full-colour newsletters to approximately 3,000 households and posted each online.

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Page 14/36

Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2022

We published a regular e-news to over 3,000 individuals to keep the community informed. These achieved good engagement:

PKD Awareness Week Month was held in September 2021. We ran a digital campaign to raise awareness, prompt discussion and educate new and existing patients, family members and healthcare professionals. We posted ‘PKD Voices’ stories was part of this campaign. Facts and statistics about PKD achieved exceptionally high organic reach and engagement on Facebook and Instagram, whist the launch of the research awards captured the media’s interest on Twitter.

A post featuring 3 brothers who had each received kidney transplants was very popular.

World Kidney Day (WKD) 2022 was celebrated digitally again in March 2022. The KCT collaborated on an awareness digital campaign. This year the focus was on the experiences of real kidney patients and family members.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 15/36

Annual Report and Financial Statement for the year ended 31 March 2022

Polycystic Kidney Disease Charity

For the first time, PKD had a strong voice in the campaign by featuring the story of young mum, Lindsay, who hopes to donate a kidney to her husband, PKD patient Richard. Their story achieved the highest reach and dwell time across the whole campaign.

We promoted and aligned our activity with other Awareness days/weeks, including Rare Disease Day in February 2022 (by sharing the story of ARPKD patient Luke, and PKD facts and stats), Salt Awareness Week (holding Shake Your Salt Habit webinar that week) and Organ Donation Week (by sharing PKD transplant stories, and posts that encourage families to share organ donation wishes).

Advocacy

Throughout the year, members of staff attended and participated in conferences, workshops and events relevant to COVID-19, kidney, liver, genetic and rare diseases.

90% of the respondents to the Autumn 2021 agreed that the charity was an effective voice for PKD patients and families in the UK.

The charity is a member of Kidney Charities Together (KCT) working collaboratively to be the single powerful voice for all kidney patients in the UK. Other member charities include Kidney Care UK, Kidney Research UK, the National Kidney Federation, Kidney Wales, the UK Kidney Association (formerly the UK Renal Association and British Renal Society). The KCT met regularly to agree unified communications around COVID-19 and plan World Kidney Day activities.

The charity is a member of several UK umbrella organisations representing the interests of people with long-term conditions (LTC) or

genetic diseases, including Genetic Alliance UK, the Health and Social Care Alliance Scotland, Rare Disease UK, the Kidney Health Partnership and the Specialised Healthcare Alliance . The charity engages with these organisations to ensure that the charity’s aims and activities are known, recognised, and taken into account. The charity regularly inputs into national consultations facilitated by these umbrella bodies.

The charity is a founder member of the Ciliopathy Alliance , which brings together patients, families, doctors, and scientists with the aim of improving the quality of life for children and adults affected by ciliopathies – primarily genetic diseases caused by defects in the function and structure of cilia (microscopic organelles found in every human cell and vital to development). PKD is an important ciliopathy with ADPKD having the largest patient cohort.

The charity is a member of Befriending Networks , the UK’s leading resource on befriending whose accreditation was obtained during 2015.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 16/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

The charity is a founding member of the Kidney Patients Involvement Network (KPIN), which is committed to increasing the number of patients engaged with initiatives and harness enthusiasm across a wider kidney patient and carer population, improving involvement and engagement from minority and under-served groups.

The charity is a member of the ABPI (Association of British Pharmaceutical Industry) Patient Organisation Forum . The forum meets regularly to discuss issues such as joint working between patient organisations and pharmaceutical companies.

The charity is a founder member of PKD International (PKDI), a global alliance of patient groups supporting people affected by all forms of PKD. These groups have similar aims to the PKD Charity. The chief executive is the current President of PKDI (a voluntary role). More information here: www.pkdinternational.org

The charity is a member of EURORDIS , the European umbrella organisation of patient groups representing adults and children with rare diseases.

The charity is a founder member of FEDERG , the European Federation of Patient Groups representing rare and genetic renal diseases.

Community involvement in the work that we do

Our PKD community plays a vital role in the work that we do. We involve them in many aspects – directly, through volunteering, speaking about their personal experience on webinars and education events; or indirectly, by asking for their feedback, taking part in consultations and surveys.

We have approximately 60 active loyal volunteers and we hugely appreciate the time and commitment they willingly give. They helped us during the year with reviewing health information, moderating our Facebook groups, hosting online support group meetings and taking part in consultations. Their sharing of personal experiences has been invaluable to others going through the PKD patient journey.

We also thank the healthcare professionals, scientists and others who gave their time to speak at the patient information events and wrote or reviewed health information materials.

In June 2021, we acknowledged publicly the contribution made by all volunteers during Volunteer Week.

Community fundraising

We thank all the amazing fundraisers who continued to support the charity’s work during 2021-22 despite the COVID-19 restrictions.

Mass participation, in person fundraising events gradually returned after the summer.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 17/36

Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2022

Sisters Lynette and Nicky took part in the London Landmarks Half Marathon in August and the London Marathon in October wearing handmade tutus bearing the names of PKD patients past and present. Four generations of their family have been diagnosed with PKD.

Many of our supporters organised their own community fundraising events such as garden parties or taking on walking, hiking, running and swimming challenges.

Jenny, a longstanding supporter, published her autobiography and donated all profits to the charity.

Grant fundraising

The National Lottery Community Fund awarded year 3 of the 5-year grant for the Positive Peers

Programme.

The trustees are grateful to the Community Fund for their understanding and support during the year.

Pro bono support

We acknowledge and thank:

2022-23 PLANS

2022-23 will be the first year of our 3-year strategy, approved in March 2022. Our long-term goals are:

In particular, in 2022-23, we will:

  1. Evolve our research partnership with Kidney Research UK

  2. Develop and launch a PKD information app, co-produced with our community.

  3. Participate in the development of PKD-specific exercise modules within the Kidney Beam

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 18/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

app

  1. Grow and develop local PKD Groups and recruit more volunteers to help organise their activities

  2. Focus our fundraising strategy on community fundraising in conjunction with our Groups

STRUCTURE, GOVERNANCE AND MANAGEMENT

Constitution

The Polycystic Kidney Disease Charity is a company limited by guarantee on 12 March 2015, Company Registration No 9486245 and is registered for charitable purposes with the Charity Commission, Charity Registration No. 1160970. The Charity is governed by its Memorandum and Articles of Association. In the event of the Charitable Company being wound up, company members are each required to contribute an amount not exceeding £10.

Trustees

Trustees, who are also directors of the Charitable Company, are recruited by open advertising and appointed by the other trustees. Trustee appointments are for three years, after which trustees retire but are eligible for re-appointment for a further two terms of three years.

They are unpaid volunteers and may claim reasonable out of pocket expenses. The charity’s activities are planned and carried out by the trustees. All trustees are required to declare relevant interests and may be required to withdraw from trustee meetings.

All trustees are encouraged to develop their trusteeship skills and to attend external conferences and events relevant to PKD and charity governance.

Governance and administration

The trustees met 5 times online during the year to review the charity’s performance, determine and approve the operating plan and budget. The trustees delegate review of grant applications to the PKD Charity Research Advisory Board (RAB) who met virtually to review grant applications. The trustees delegate the management of charitable activities and administration to a small team led by the chief executive. The trustees monitored performance at trustee meetings; the chair has regular phone and face-to-face meetings with the chief executive.

Risk Management

The trustees have overall responsibility for ensuring that the charity is managing risk in a professional, responsible and constructive manner. This has involved identifying risks the charity may face, assessing potential impacts and seeking to minimise them. Material risks for charity include key person dependency on its chief executive, risk of loss of supporters, managing regulatory changes, and maintaining a surplus. The trustees continue to review the risks caused by COVID-19, with a view to mitigating these risks. The trustees regularly review the charity’s risk management policies, which include data protection and safeguarding – the charity is registered with the Information Commissioner and requires trustees, staff and some volunteers to undertake Adult Safeguarding Courses. The charity is exposed to financial risks, such as loss of income, which it aims to mitigate by

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 19/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

maintaining sufficient reserves while continuing to diversify fundraising, for example, by increasing grant funding.

Fundraising

The charity undertakes most of its fundraising activities in-house and used a consultant solely for the purposes of grant applications. The charity is a member of the Fundraising Regulator , providing reassurance to supporters, members of the public and other donors, and promoting best practice in fundraising. The charity received no complaints about its fundraising practice in this financial year.

The charity is registered with the Information Commissioner and all supporters’ and stakeholders’ personal data are maintained securely in accordance with the GDPR (2018).

FINANCIAL REVIEW

Performance

During the 12 months to 31 March 2022, the charity’s income was £348,243 (2021: £361,800).

Expenditure on raising funds as a percentage of total incoming resources was 19 % (2021: 17%). Research expenditure was £90,626 (2021: £70,803). The Charity’s expenditure on charitable activities across Patient support, Awareness and Education was £136,839 (2021: £105,455), which included information days, telephone support, online/chat support and expenditure on the peer support service.

In total, the Charity expended £324,193 (2021: £267,797), resulting incoming resources for the year of £24,050 (2021: £94,003). Total fund balances at the year-end were £421,512 (2021: £397,462) and all funds maintained a surplus position at the year-end (Note 17).

Public Benefit

All charitable activities are undertaken to further charitable purposes for public benefit. The trustees confirm they have referred to the guidance contained in the Charity Commission’s general guidance on public benefit when reviewing the charity’s aims and objectives and in carrying out and planning current and future activities.

Reserves

The Charity maintains a Reserves Policy to hold reserves equivalent to a minimum 3 months’ ongoing expenditure, after covering current liabilities. As at the year end, the Charity had Undesignated Unrestricted Funds of £111,857 (2021: £156,353), equivalent to 4 months´ total expenditure (2021: 7 months). The trustees considered that the Charity has sufficient reserves at the year-end and are of the view that the Charity continues to be a going concern.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 20/36

Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2022

Risk Management

The trustees have overall responsibility for ensuring that the Charity is managing risk in a professional, responsible and constructive manner. This has involved identifying risks the Charity may face, assessing potential impacts and seeking to minimise them. Material risks for Charity include key person dependency on its Chief Executive, risk of loss of supporters, managing regulatory changes, and maintaining a surplus. The trustees continue to review succession plans and to survey the satisfaction of its beneficiaries and supporters, with a view to mitigating these risks. The trustees regularly review the Charity’s risk management policies, which include data protection and safeguarding. The Charity is exposed to financial risks, such as loss of income, which it aims to mitigate by maintaining sufficient reserves while continuing to diversify fundraising, for example, by increasing grant funding.

Approved by the Trustees and signed on their behalf by

Idriz Adedoja Trustee Treasurer 28 December 2022

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 21/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

Independent Examiner's Report to the Trustees of the Polycystic Kidney Disease

Charity

Independent examiner’s report to the trustees of The PKD Charity

I report on the accounts of the company for the year ended 31 March 2022, which are set out on pages 23-36.

Respective responsibilities of trustees and examiner

The trustees (who are also the directors of the company for the purposes of company law) are responsible for the preparation of the accounts. The trustees consider that an audit is not required for this year under section 144(2) of the Charities Act 2011 (the 2011 Act) or under Regulation 10 (1)(a) to (c) of The Charities Accounts (Scotland) Regulations 2006 (the 2006 Accounts Regulations) and that an independent examination is needed. The charity is required by company law to prepare accrued accounts and I am qualified to undertake the examination by being a qualified member of Institute of Chartered Accountants in England and Wales. Having satisfied myself that the charity is not subject to audit under company law and is eligible for independent examination, it is my responsibility to:

Basis of independent examiner’s report

My examination was carried out in accordance with the general Directions given by the Charity Commission and is in accordance with Regulation 11 of the Charities Accounts (Scotland) Regulations 2006. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit and consequently no opinion is given as to whether the accounts present a ‘true and fair view’ and the report is limited to those matters set out in the next statement.

Independent examiner’s statement

In connection with my examination, no matter has come to my attention:

(1) which gives me reasonable cause to believe that in any material respect the requirements:

Charles Pickin

Fellow of Institute of Chartered Accountants in England and Wales Harrison Jasper Ltd Florance Lane

Groombridge TN3 9SH

28 December 2022

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 22/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

STATEMENT OF FINANCIAL ACTIVITIES - 1 APRIL 2021 TO 31 MARCH 2022

(INCORPORATING INCOME AND EXPENDITURE ACCOUNT) FOR THE YEAR ENDED 31 MARCH 2022

Notes
Income from:
Donations grants and legacies
3
Other trading activities
4
Investment income
5
Total income
Expenditure on:
Cost of fundraising
6
Non-charitable trading activities
6
Total
Research and grants
7
Awareness and education
Patient support
Depreciation
10
Total
Other expenditure
Governance costs
8
Total expenditure
Net income / (expenditure) for the year
Fund balances brought forward at 1 April
18
Net incoming resources for the year
17
Transfers between funds
17
Fund balances carried forward
17		 Restricted
Funds
2022
£
53,425
-
-
53,425
-
-
-
88,595
15,454
79,025
5,904
188,978
-
188,978
(135,553)
95,791
(135,553)
235,482
195,720		 Unrestricted
Funds
2022
£
285,863
7,081
1,874
294,818
67,075
2,598
69,673
2,031
36,510
-
-
38,541
27,001
135,215
159,603
301,671
159,603
(235,482)
225,792		 Total
2022
£
339,288
7,081
1,874
348,243
67,075
2,598
69,673
90,626
51,964
79,025
5,904
227,519
27,001
324,193
24,050
397,462
24,050
-
421,512		 Total
2021
£
346,285
13,602
1,913
361,800
61,792
7,958
69,750
70,803
30,342
71,176
3,936
176,257
21,789
267,797
94,004
303,458
94,004
-
397,462

The Statement of Financial Activities includes all gains and losses in the year and therefore a statement of total recognised gains and losses has not been prepared.

All of the above amounts relate to continuing activities.

The notes on pages 26 - 36 form part of these financial statements.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 23/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

BALANCE SHEET AT 31 MARCH 2022

ALANCE SHEET AT 31 MARCH 2022
Notes
FIXED ASSETS
Tangible assets
13
CURRENT ASSETS
Debtors
14
Cash at bank
Total current assets
Liabilities
Creditors: Amounts falling due
within one year
15
NET CURRENT ASSETS
Total
assets
less
current
liabilities
Creditors: Amounts falling due
after more than one year
16
NET ASSETS
The funds of the Charity:
Unrestricted funds - Designated
17
Unrestricted funds - General
17
Restricted funds
17
TOTAL FUNDS		 2022 Total
Funds
£
7,872
7,783
535,666
543,449
84,809
458,640
466,512
45,000
421,512
76,985
148,807
195,720
421,512		 2021 Total
Funds
£
13,776
9,754
489,650
499,404
105,718
393,685
407,461
10,000
397,462
145,318
156,353
95,791
397,462

The company was entitled to exemption from audit under section 477 of the Companies Act 2006.

The members have not required the company to obtain an audit of its accounts for the year in question in accordance with section 476 of Companies Act 2006.

The directors acknowledge their responsibilities for complying with the requirements of the Act with respect to accounting records and the preparation of accounts.

The financial statements have been prepared in accordance with the provision applicable to entities subject to the small companies regime.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 24/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

The financial statements were approved by the Trustees and authorised for issue and signed on their behalf by:

Idriz Adedoja Trustee Treasurer 28 December 2022

The notes on pages 26-36 form an integral part of these accounts.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 25/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022

1. GENERAL INFORMATION

The Charity is a company limited by guarantee and has no share capital. In the event of the Charity being wound up, the liability in respect of the guarantee is limited to £10 per member of the Charity. Its registered office is:

86-90 Paul Street London EC2A 4NE

The significant accounting policies applied in the preparation of these financial statements are set out below. These policies have been consistently applied unless otherwise stated.

2. ACCOUNTING POLICIES

The principal accounting policies adopted are as follows:

i) Basis of preparation

The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the United Kingdom and the Republic of Ireland (FRS 102) (Charities SORP FRS 102 second edition – effective January 2019) and the Charities Act 2011. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy or note.

The Polycystic Kidney Disease Charity meets the definition of a public entity under FRS102. Assets and liabilities are initially recorded at historical cost or transaction value unless otherwise stated in the relevant accounting policy.

ii) Going Concern

The Trustees are of the view that the Charity holds sufficient funds to carry on for the next 12 to 18 months and that on this basis the assessment of the Trustees is that the Charity is a going concern.

iii) Incoming Resources

All incoming resources are recognised once the Charity has entitlement to the resources, it is certain that the resources will be received, any performance conditions attached to the item(s) of income have been met or are fully within the control of the Charity and the monetary value of incoming resources can be measured reliably.

iv) Investment Income

Investment income is accounted for in the period in which the Charity is entitled to receipt. Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the Charity; this is normally upon notification of the interest paid or payable by the Bank.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 26/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022

v) Resources Expended

Expenditure is recognised once there is a legal or constructive obligation to make a payment to a third party, it is probable that settlement will be required, and the amount of the obligation can be measured reliably. All expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all costs related to the category.

Governance costs principally comprise Trustees’ meeting costs, accountancy costs, professional fees, and an allocation of staff time.

vi) Grants

Provision is made for grants when the Trustees have made a binding commitment, and this has been communicated to the applicant.

vii) Government grants

grants are accounted under the accruals model as permitted by FRS102. Grants relating to expenditure on tangible fixed assets are credited to the Statement of Financial Activities at the same rate as depreciation on the assets to which the grant relates. The deferred element of grants is included in creditors as deferred income.

viii) Tangible fixed assets and depreciation

Depreciation is provided at rates calculated to write off the cost less the estimated residual value of each tangible fixed asset over its expected useful life.

ix) Current asset investments

Current asset investments represent cash investments maturing within one year and are shown at carrying value.

x) Debtors

Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid after taking account of any trade discounts due.

xi) Pensions

Employees of the Charity are entitled to join The Peoples Pension, a defined contribution pension scheme. The Charity contribution is restricted to the contributions disclosed in note 9. Pension costs are allocated to activities in proportion to the related staffing costs incurred. The defined contribution pension scheme is managed by The Peoples Pension Trustee. The Charity has no liability beyond making its contributions and paying across the deductions for the employee’s contributions.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 27/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022

xii) Creditors and provisions

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.

xiii) Financial instruments

The Company only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value with the exception of bank loans which are subsequently measured at amortised cost using the effective interest method.

xiv) Funds Structure

Funds are established to provide financial resources for aspects of the Charity’s activities. Some funds were set up when the Charity received grants and donations that were made for specified purposes. Where conditions were made, the funds set up are restricted funds. The names of most of the funds convey the purposes for which they were established.

xv) Fund Accounting

General funds are unrestricted funds which are available for use at the discretion of the Trustees in furtherance of the general objectives of the Charity and which have not been designated for other purposes.

Designated funds comprise unrestricted funds that have been set aside by the Trustees for particular purposes. The aim and use of each designated fund is set out in the notes to the financial statements.

Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors or which have been raised by the Charity for particular purposes. The costs of raising and administering such funds are charged against the specific fund. The aim and use of each restricted fund is set out in the notes to the financial statements.

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Page 28/36

Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2022

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022

3. DONATIONS, GRANTS AND LEGACIES

Donations and gifts
Trusts, foundations and grants
Gift Aid
Total 2022
Total 2021		 Restricted
funds
2022
£
300
53,125
-
53,425
174,557		 Unrestricted
funds
2022
£
261,785
-
24,078
285,863
171,728		 Total Funds
2022
£
262,085
53,125
24,078
339,288
346,325		 Total Funds
2021
£
164,249
166,125
15,952
346,325

No government grants were received during the year (2021: £Nil).

4. INCOME FROM OTHER TRADING ACTIVITIES

Shop and other income
Total 2022
Total 2021
. INVESTMENT INCOME
Interest income
Total 2022
Total 2021		 Restricted
funds
2022
£
-
-
-
Restricted
funds
2022
£
-
-
-		 Unrestricted
funds
2022
£
7,081
7,081
13,602
Unrestricted
funds
2022
£
1,874
1,874
1,913		 Total Funds
2022
£
7,081
7,081
13,602
Total Funds
2022
£
1,874
1,874
1,913		 Total Funds
2021
£
13,602
13,602
Total Funds
2021
£
1,913
1,913

5. INVESTMENT INCOME

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 29/36

Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2022

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022

6. EXPENDITURE ON RAISING FUNDS

Cost of fundraising
Cost of goods sold
Total 2022
Total 2021
. ANALYSIS OF RESEARCH AND GRANTS
Bio Resource Bank
ADPKD Research
Kidney Research UK
UCL Great Ormond Street Institute of Child
Health
Staff, subcontractor and other costs
Total:
Bio Resource Bank
ADPKD Research
Kidney Research UK
UCL Great Ormond Street Institute of Child
Health
Total:		 Restricted
funds
2022
£
-
-
-
-
2022
£
-
54,750
5,000

14,960
15,916
90,626
Grants to
Institutions
No.
-
2
1
1
4		 Unrestricted
funds
2022
£
67,075
2,598
69,673
69,750
2021
£
8,500
29,033
-
-
33,269
70,803
Grants to
Individuals
No.
1
2
-
-
3		 Total Funds
2022
£
67,075
2,598
69,673
69,750		 Total Funds
2021
£
61,792
7,958
69,750

7. ANALYSIS OF RESEARCH AND GRANTS

Details of material grants are disclosed in the Trustees Report.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 30/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022

8. SUPPORT COSTS

Trustee meetings and governance
Accountancy and audit
Other professional fees
Staffing costs
Total:
. EMPLOYMENT COSTS
Wages and salaries
Social security costs
Defined contribution pension costs
Total:		 2022
£
1,008
13,917
5,497
6,579
27,001
2022
£
119,739
10,943
2,986
133,668		 2021
£
131
12,927
3,866
4,865
21,789
2021
£
136,396
9,351
2,380
148,127

9. EMPLOYMENT COSTS

Employment costs are allocated to the activities to which they relate in the Statement of Financial Activities.

As at 31 March 2022 a balance of £29 overpaid pension contributions was owed to the Charity (2021: £180).

The average number of staff employed by the Charity during the year was 6, with a full time equivalent of 4 (2021: 4).

No employee received total benefits exceeding £60,000.

Key management personnel of the Charity comprises the Trustees and the Chief Executive Officer, the Support Services Manager, the Fundraising Manager and the Community Engagement Manager. Key management personnel received total remuneration of £116,877 (2021: £132,775).

10. NET INCOME/(EXPENDITURE) FOR THE YEAR

This is stated after charging:
Independent Examiners Remuneration
Depreciation
Total:		 2022
£
-
5,904
5,904		 2021
£
-
3,936
6,186

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 31/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022

11. TRUSTEE REMUNERATION & EXPENSES

The Trustees were not remunerated by the Charity for their services during the year. Total expenses reimbursed during the year totalled £Nil (2021: £Nil).

12. TAXATION

The Charity is exempt from tax on income and gains falling within section 505 of the Taxes Act 1988 or s256 of the Taxation of Chargeable Gains Act 1992 to the extent that these are applied to its charitable objects. No tax charges have arisen in the Charity.

13. ANALYSIS OF MOVEMENT OF FIXED ASSETS

3. ANALYSIS OF MOVEMENT OF FIXED ASSETS
Cost
At 1 April 2021
Additions
Disposals
At 31 March 2022
Accumulated depreciation
At 1 April 2021
Charge for the year
Disposals
At 31 March 2022
Net Book Value
At 1 April 2021
At 31 March 2022
4. DEBTORS
Prepayments
Accrued income
Other debtors
Total debtors		 2022
£
7,100
-
683
7,783		 2022
£
Office equipment
29,209
-
-
29,209
15,433
5,904
-
21,337
13,776
7,872
2021
£
9,754
-
-
9,754

14. DEBTORS

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 32/36

Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2022

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022

15. LIABILITIES: AMOUNTS FALLING DUE WITHIN ONE YEAR

Trade creditors
Accruals
Other creditors
Grant commitments (Note 18)
Total current liabilities		 2022
£
2,480
3,245
(29)
79,113
84,809		 2021
£
4,280
2,328
1,297
97,813
105,718

16. LIABILITIES: AMOUNTS FALLING DUE AFTER MORE THAN ONE YEAR

Grant commitments within five years (Note 18) 2022
£
45,000		 2021
£
10,000

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 33/36

Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2022

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022

17. FUNDS AND RESERVES – CURRENT YEAR

Unrestricted Funds
Research
National Lottery – Matched
Funding
General fund
Total funds		 Total funds
at 01/04/21
145,318
-
156,353
301,671		 Income
-
-
294,818
294,818		 Expenditure
(2,031)
-
(133,184)
(135,215)		 Transfer
(143,287)
76,985
(169,180)
(235,482)		 Total funds at
31/03/22
-
76,985
148,807
225,792

Research – Designated to support research for PKD

National Lottery – Matched Funding – Designated to fund a programme of support services for people affected by polycystic kidney disease

General fund – the free reserves, after allowing all other designated funds

Restricted Funds
Support Activities
ARPKD Research
Research
European PKD Conference
National Lottery - PPP
National Lottery – Nurse
Co-ordinator
PKDC/KRUK Research
Total funds		 Total funds
at 01/04/21
2,000
25,850
-
31,500
8,439
28,002
-
95,791		 Income
-
-
300
-
53,125
-
-
53,425		 Expenditure
-
(22,500)
(66,095)
(15,454)
(84,929)
-
-
(188,978)		 Transfer
(2,000)
-
66,095
(16,046)
37,733
-
150,000
235,482		 Total funds at
31/03/22
-
3,350
-
-
14,368
28,002
150,000
195,720

Support Activities – Support related activities, such as information days Research – Research related to PKD

ADPKD Research – Research related solely to ADPKD

ARPKD Research – Research related solely to ARPKD

European PKD conference – Income received to fund the European PKD conference

National Lottery, PPP – To fund a programme of face to face, online and telephone support for patients and families who are dealing with the traumatic and often devastating effects of PKD

National Lottery, Nurse Co-ordinator – Income received to fund Nurse co-ordination

PKDC/KRUK Research – to fund PKD research projects jointly with Kidney Research UK

Transfers represent research grants that have firstly been expended against the appropriate restricted fund that is for specific types of research and once that restricted fund is fully utilised any balance is transferred to unrestricted funds.

In March 2022, the Trustees agreed to transfer £150,000 from the general fund to PKDC Research.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 34/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022

18. FUNDS AND RESERVES – PRIOR YEAR

Unrestricted Funds
Research
PKD Bio-Resource
PKD Registry
General fund
Total funds
Restricted Funds
Support Activities
ADPKD Research
ARPKD Research
Research
European PKD Conference
National Lottery - PPP
National Lottery – Covid-19
National Lottery – Nurse
Co-ordinator
Total funds		 Total funds at
01/04/20
65,000
-
-
192,006
257,006
Total funds
at 01/04/20
2,000
2,089
25,850
11,084
-
5,430
-
-
46,452		 Income
-
-
-
187,243
187,243
Income
-
2,150
-
6,283
31,500
78,122
28,501
28,002
174,557		 Expenditure
-
-
-
(126,650)
(126,650)
Expenditure
-
(14,033)
-
(23,500)
-
(75,112)
(28,501)
-
(141,146)		 Transfer
80,318
-
-
(96,246)		 Total funds at
31/03/21
145,318
-
-
156,353
(15,928) 301,671
Transfer
-
9,794
-
6,134
-
-
15,928		 Total funds at
31/3/21
2,000
-
25,850
-
31,500
8,439
-
28,002
95,791

19. ANALYSIS OF NET ASSETS BETWEEN FUNDS – CURRENT YEAR

Tangible fixed assets
Current assets
Creditors due within one year
Creditors due in more than one year
Total:		 Unrestricted
funds
2022
Restricted
funds
2022
Total
funds
2022
£
£
7,872
-
7,872
191,093
352,356
543,449
(3,245)
(81,564)
(84,809)
-
(45,000)
(45,000)
195,720
225,792
421,512

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 35/36

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2022

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2022

20. ANALYSIS OF NET ASSETS BETWEEN FUNDS – PRIOR YEAR

Tangible fixed assets
Current assets
Creditors due within one year
Creditors due in more than one year
Total:
21. GRANT COMMITMENTS
Balance at 1 April 2021
New commitments
Cancelled commitments
Commitments paid
Balance at 31 March 2022
22. RELATED PARTY TRANSACTIONS
Donations Received from Trustees
Grants to related parties		 Unrestricted
funds
2021
Restricted
funds
2021
Total
funds
2021
£
£
13,776
-
13,776
290,222
209,182
499,404
(2,328)
(103,390)
(105,718)
-
(10,000)
(10,000)
301,671
95,791
397,462
£
107,813
74,710
-
(58,410)
124,113
2022
2021
2,381
6,120
4 Trustees (2021: 4) made
donations during the year
-
8,500
Professor P Wilson – UCL, is
a Trustee of the Charity

The Charity established a casual worker contract with the daughter-in-law of a Trustee. The Trustee was not involved the decision to appoint. The details are as follows:

Employment Related Parties
Trustee Employee 2022 2021
Alan Greenberg Louise
Greenberg		 5,848 6,001

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Page 36/36