2021-03-31-accounts - Pelvic Radiation Disease Association

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PELVIC RADIATION DISEASE ASSOCIATION Annual Report 2020-2021

Legal & Administrative Information

Contents

Registered Company number: 07998409 (England and Wales)

3 - Foreword

4- Introduction

Registered Charity number:

1147802

Registered office:

62 Norbiton Avenue, Kingston upon Thames, Surrey, KT1 3QP

Trustees:

Wille Auld Sue Boyes (appointed 11.9.20) David E Jillings Jane P Norris-Jones (resigned 16.1.21) Dr Lisa A Punt (appointed 15.5.20) Dr Benjamin D Sacks (appointed 25.5.20) Bhumi Shah (appointed 12.6.20) Dr Lesley Smith Richard C Surman (resigned 11.12.20) Lorraine Whyte (appointed 25.5.20) (resigned 1.12.20) John A Webber (appointed 18.6.20)

5 - Highlights of 2020 -2021

7 - Annual Conference

8 - Our year in numbers

10 - Patient story

11 - Summary of our plans for 2021 - 2022 and beyond.

12 - Objectives and activities

13 - Report of the Trustees

14 - Financial Review

15 - Independent Examiner's Report to the Trustees

16 - Statement of financial activities

D E Jillings

Mary E Ryan FCCA, CertPFS, DChA Ark Accountancy Chartered Certified Accountant 31 Cheam Road Epsom Surrey KT17 1QX

17 - Balance Sheet

18 - Statement of Trustees Responsibilities

19 23 - Financial Statement

Foreword

As an agony columnist, I am all too familiar with the deep distress felt by people who have difficulties in their lives that make them feel they have no-one to turn to.

I also know how much Pelvic Radiation Disease can affect people's lives, both physically and mentally, and how hard it is to talk about, even to close family. The sense of isolation and uncertainty is very real, made worse of course by the pandemic lockdowns.

I greatly admire how the Pelvic Radiation Disease Association has adapted through this last year to offer more support online and by phone for people struggling to cope after their cancer treatment. Helping people find out that they are not alone and that there are effective ways to get back to doing the things they love is what this charity does so well. I wish the charity and its friends and supporters a very successful year ahead.

Virginia Ironside, Patron of the Pelvic Radiation Disease Association

About the PRDA

Pelvic Radiation Disease (PRD) is a long-term side-effect (‘late effect’) of pelvic radiotherapy treatment affecting an estimated 100,000 people in the UK. People affected by PRD often have a complex set of symptoms affecting the bowel, bladder, sexual function or other functions for many years after radiotherapy, sometimes only appearing several years after radiotherapy treatment.

PRDA is a small UK charity, established in 2012 in order to do something about the poor quality of life experienced by so many people with PRD. PRDA’s objectives are to see that the effects of PRD are minimised, that people affected by PRD are given the best possible care and treatment, and that PRD is accepted as a serious problem and given the attention it deserves

PRDA aims to have an impact by:

Providing and facilitating direct support and information to people affected by, or at risk of PRD · Providing a voice for people affected by PRD.
Influencing decision-makers to achieve adequate, dedicated funding for PRD services across the UK.
Working with charity, professional organisations, NHS and other partners to improve health and social services for people affected by PRD.
Working with charity and professional organisation partners to improve professional awareness and education on the prevention and treatment of PRD.
Influencing research and trials that address issues to do with PRD.

PRDA is run by a Board of volunteer Trustees supported by a small office team. PRDA has a network of incredible volunteers who provide much-needed help and support - not forgetting our Medical Advisory Panel, who provide valuable advice.

Introduction

John Webber - Chair of Trustees

I am incredibly proud of the way PRDA has grown and the hurdles we have overcome in the last year. Against the backdrop of Covid-19 and following the departure of two instrumental and long-tenured Trustees, the charity has continued to develop its support offering to many people living with the devastating effects of PRD.

We have made several changes to our Board, with five new Trustees bringing a wealth of experience and expertise to help the charity continue to extend its services and influence. Our former Chair Richard Surman and Hon. Secretary Jane Norris-Jones both stepped down, and I would like to take this opportunity to recognise the incredible sense of purpose and the energy they brought with them, which carried the charity from its creation to where it is today.

We are ever grateful to every single one of our supporters, donors, fundraisers, medical advisors and volunteers for your support and we thank wholeheartedly everyone who has contributed to the success of PRDA in 2020/21.

As we have been confined to our houses during the pandemic, PRDA has rapidly expanded our remote and online work. Whether building an online community for peer-to-peer support and conversation, welcoming individuals to remote ‘Chat Together’ support meetings, or making outbound calls to our supporters and service users, our focus has remained squarely on how we can improve the lives of people affected by PRD and reduce their sense of isolation.

We have grown in other ways, too – delivering our first all-day online conference to over 350 registered attendees, working in collaboration with Jo’s Cervical Cancer Trust to publish important new findings about PRD, increasing our volunteering and professional engagement work and bringing skilled new personnel into our office team.

We continue to operate under an incredibly restrictive budget, and the challenge facing the organisation to raise the profile of PRD among patients and professionals remains vast.

It is due to you that we are achieving more than ever before, but we have many more ambitions, and we look forward to your ongoing support in 2021/22 and beyond.

Highlights of 2020 2021

2020/21 has been an extraordinary year in the life of PRDA, with many positive changes happening, despite the pandemic. Here are some of our top highlights, showing how we have extended our support for people with PRD and substantially grown our influence.

Launch of Online Community

In June 2020, we launched the PRDA Online Community, hosted on HealthUnlocked, which also hosts many other charities’ communities, such as the British Heart Foundation. We are very proud of how the PRDA Online Community has grown over the past year. It provides a much-needed safe and friendly forum for all to share experiences, find information and receive support. Members have asked over 140 questions about many of the difficult bowel, bladder, sexual, bone and nerve problems that affect people with PRD, and have not only been given useful answers but also warm support and encouragement from fellow members.

Launch of virtual 'Chat Together' Group

PRD symptoms can cause so much uncertainty and many people feel unable to leave the house. With the Covid-19 pandemic imposing so many restrictions, our Kingston support group had to suspend its in-person meetings. People really value talking to others affected by PRD, so we knew that PRDA needed to offer more virtual support.

Our virtual ‘Chat Together’ Group was formed in November 2020 and is open to anyone to attend. Regular group meetings are being hosted on Zoom, and participants are able to chat in a relaxed and confidential space.Some people pop in for a quick hello, others stay for the whole session, it’s up to the individual as to how long they stay.

“These chats are helping me hugely with information about the physical aspects and, even more so, on the psychological issues I've experienced from PRD.”

With no set agenda for each session, each group member can share as much or as little as they want, with no pressure. It's an extremely relaxed, friendly and, most importantly, supportive session. A safe space to chat amongst people who understand each other’s worries.

‘I Want My Life Back’ report

After over a year of planning, this important report, a collaboration between PRDA and Jo’s Cervical Cancer Trust, was published on 23rd December 2020. The report is a must-read for anyone who has an interest or connection with PRD. It highlights the severe difficulties people often face in accessing support and services for PRD, something that PRDA understands all too well.

The recommendations include:

Patient information about PRD at the end of pelvic radiotherapy treatment.

Centres of excellence for PRD and guidelines on the treatments for PRD. Funding for much-needed clinics and services.
Research on PRD, including long range studies on the experience of patients. Improving the education of health professionals about PRD.The recommendations include:

The response to the report has been overwhelmingly positive and the focus now is to keep on pushing for these recommendations to be taken up.

Trustee Lesley Smith completed an - incredible 26 hour - non stop danceathon with 26 wacky costume changes, raising over £5,000 for PRDA! We look forward to reporting on her latest bonkers fundraising efforts in next year’s report…

Our free ‘Just Can’t Wait’ toilet card remains a popular and helpful item for patients during and after pelvic radiotherapy

We sent over 7,000 leaflets and toilet cards to UK Radiotherapy centres to help support people and raise awareness of Pelvic Radiation Disease

Annual Conference

With over 350 people registered to attend PRDA’s first ever virtual conference this was set to be by far our furthest-reaching activity since the formation of the charity. The event took place across two distinct sessions: the morning focused on supporting and informing people affected by PRD, while the afternoon session was aimed at health professionals, covering research and clinical management of PRD symptoms.

Our speakers are all leaders in the field of PRD and their highly informative and inspirational talks are available as individual segments on the PRDA website. Feedback has been overwhelmingly positive for both sessions with 83.5% of attendees rating the content as ‘Excellent’ in our post-conference feedback study.

The effect on patients was as affirming As a PRD sufferer for 12 yrs, I thought all support and reassuring as we could have was gone except for recently finding PRDA. The hoped for, with a running theme in our Conference was excellent! I hope the - delegate survey that PRD patients often awareness of PRD will be spread ' feel there is no one to support them, especially to GPs as I ve had huge difficulties until they find PRDA. getting the correct referrals.

With over 70% of delegates coming from a healthcare background, it was particularly important that the event helped them to better support their patients, as stated by one of our professional delegates:

" It is so easy to become accustomed to [radiotherapy] planning being just lines on a scan. Events like this show that the plan being produced is going to impact that patient more than just (hopefully) curing their cancer. I would definitely attend again and will be highlighting this with my colleagues."

Pictured above are some of our speakers (left - right) Dr Anthony Cunliffe, Dr Isabel White, Dr Lisa Durrant, Prof Sara Faithfull and Rebecca Shoosmith.

It is very important to PRDA that our work involves and is informed by people with lived experience of PRD. Four of the speakers have had personal experience of PRD, either themselves or a loved one. Anyone who has this experience knows how badly quality of life can be affected, but how difficult it can be to find the right help. As Willie Auld, PRDA Trustee, said in his talk:

I feel really passionate about what happened to me, and to get my story out, with a view to making some improvements, because there is definite need for improvement.”

While we did not charge for the conference, we have been delighted to receive over £800 in donations, which will help PRDA to continue our vital work supporting and informing patients and professionals.

Our grateful thanks to Rebecca Shoosmith, Rhea Crighton, Dr Lisa Durrant, Dr Isabel White, Prof Jervoise Andreyev, Lisa Punt, Willie Auld, Prof Sara Faithfull and Dr Anthony Cunliffe for giving their time so generously to speak with passion and determination about how imperative it is that more is done to raise awareness, and to help people with PRD to understand and manage their symptoms and to have a better quality of life.

Our year in numbers

2020/21 has seen a year of substantial growth for PRDA in terms of the number of people that we are helping and getting our message to. Despite all the restrictions of the pandemic, we have been able to directly help a lot more people with PRD and are also making a significant impact with health professionals.

The number of people we helped over the phone and email increased by a third from 329 to 434, driven mainly by our provision of welfare calls during the worst of the pandemic lockdown period in 2020. Added to this, we had over 17,000 page views for posts on our new Online Community, which had grown to 167 members at March 2021.

We aimed to reach many more people via social media, and have been very successful:

We have nearly doubled our followers on Facebook and LinkedIn and the latter has helped considerably with awareness of PRD to hundreds of health professionals
Twitter followers are up by a third, while tweet impressions have doubled to 162,000
We started an Instagram account in late 2020 and follower numbers are increasing at a good rate.

Visits to our website were up 12% compared to the previous year, but we know we can do better with this, and have work to do to make our website more user-friendly and helpful.

Whilst the pandemic has affected direct requests for our leaflets, we continued to raise awareness of PRD and how the charity provides support for patients and professionals by distributing 7,000+ items to over 100 radiotherapy clinics UK-wide. Feedback from the clinic managers told us that our ‘Just Can’t Wait’ toilet card remains a popular and helpful item for patients during and after pelvic radiotherapy.

"I feel I have been in training for Lockdown for years. I felt waves of relief when I found PRDA, to know there was hope and that I wasn't alone"

Online Community 167 members 17,000

154 welfare calls made during lockdown

page views in lockdown its first 9 months 7,000+ leaflets Chat Together sent to UK radiotherapy 26 clinics group meetings

Organised our first online conference for 350 people

Individual fundraisers raised

10 x more than last year

Social media followers up 68% Website visitors up 12%

Pelvic Radiation Disease Association 2020/2021

Patient stories

Willie Auld

"From the end of my radiotherapy treatment, I have been plagued with very unpleasant bowel and bladder problems, as well as mental health difficulties. The Pelvic Radiation Disease Association is an invaluable ‘ray of sunshine’ in my bleak landscape, where I am able to receive advice, and discuss the symptoms of PRD with people who understand and empathise. It really helps to know I am not on my own in experiencing these problems. My distress about the way PRD has affected my life has been greatly compounded by the lack of adequate information before radiotherapy about the possibility of unpleasant, permanent after effects.

Then, when the problems did occur for me, doctors seemed unsure what to do and were slow to act, despite such a serious negative impact to my quality of life.

I have been volunteering with PRDA and my main motivation is to be an enthusiastic and active advocate for raising awareness of PRD amongst the medical profession, and with patients."

A summary of our plans for 2021/22 and beyond

Our aim is to grow much further in the coming years in order to help many more people, therefore we must develop and diversify our fundraising significantly.

2021/2022 objectives

Review and improve the services we offer to people who seek help and support from PRDA.
Set up our first ever Patient Advisory Group to ensure the voice of people with PRD stays at the very heart of everything PRDA does.
Establish a new Volunteering Strategy.
Develop ‘best practice’ guidance for professionals on managing PRD, which will be launched in 2022.
Increase awareness of PRD more, through social media, our website and on Wikipedia.
Seek new sources of funding.
Improve efficiency with new and better office IT.

Objectives and Activities

The term Pelvic Radiation Disease is still to gain general acceptance among health professionals as a valid and useful framework within which to describe brief or long lasting problems, mostly in the bowel, caused by pelvic radiotherapy. The trustees aim to bring this disease to the attention of health professionals and patients to inform them about how to alleviate their symptoms. The trustees work to have the most up to date information for patients on the various aspects of Pelvic Radiation Disease and available resources for treatment.

The objectives of the charity as per the Articles are:

To campaign for the wider recognition of Pelvic Radiation Disease as well as for improvement in National Health Service facilities and treatment to help the management of radiation induced surgery.

To support patients suffering from radiation induced injury and in particular patients suffering from Pelvic Radiation Disease in any appropriate way including through a network of informal support groups that are professionally supported.

To gather information about and support research into Pelvic Radiation Disease.

Significant Activities

Founded twelve years ago as a patient support group and registered as a charity in 2012, the trustees continue to dedicate themselves, with the support of volunteers, to expand the outreach of the Pelvic Radiation Disease Association (PRDA) and to further refine the charity's provision of information, support and guidelines to both patients and health professionals.

Patient stories

- Keith

"The radiotherapy had shrunk my bladder, causing back pressure and damage to my kidneys. What followed was almost constant infections resulting in hospital stays nearly every month.

I was in a dark place and could not see the point in just existing and having no quality of life. I had lost four stone, hardly had the energy to get out of bed, all food tasted disgusting and it affected what I could drink. It was decided to remove my bladder and prostate, and introduce me to life with a stoma. I would say do not be put off by having a stoma; it is not ideal, but it has given me back a relatively normal life of feeling well and healthy. It is only natural to be frightened (as I was) that life would forever be changed for the worse by prostate cancer and Pelvic Radiation Disease.

I feel fortunate in having a ‘happy ending’ after a very gruelling time but I know that there are also many others who come through as I have." 12

Report of the Trustees

For the Year Ended 31 March 2021

STRUCTURE, GOVERNANCE AND MANAGEMENT

Governing document

The Charity was established under a Memorandum of Association which established the objects of the charitable company, and is governed under its Articles of Association.

The charity is governed by the Board of trustees which meets on a regular basis. The secretary and the trustees manage all day to day operations of the charity and support and advise on all financial matters. The charity is registered with the Fundraising Regulator

Recruitment and appointment of new trustees

Trustees receive written minutes at Board Meetings held during the year to ensure they are kept up to date with the activities of the charity. In addition, the trustees review The Pelvic Radiation Disease Association portfolio of policies and procedures on a regular basis, and introduce new policies and procedures as appropriate.

The board increased the number of trustees during the 2020 21 year, with the aim of making the board larger, replacing those who were due to step down and increasing the skills and experience base for the greater benefit of the charity.

During the course of the year two of our founding trustees and directors, Mr Richard Surman (former Chairman) and Mrs Jane Norris-Jones, retired from the board. We owe them an enormous debt of gratitude. Lorraine Whyte was appointed on 25/5/20 but stood down before the close of the year

Related parties

The Charity has no subsidiaries. There are no related parties in the charity.

Risk management

The trustees have assessed the major risks to which the Charity is exposed, in particular those related to the operation and finances of the charity, and are satisfied that the systems are in place to mitigate their exposure to the major risks. Efforts are continuously made to increase funds. Internal risks are minimized by implementation of satisfactory operational procedures, and consistent quality of service delivery. These are reviewed by the Board on a regular basis.

Investments

PRDA does not hold any investments.

Financial Review

The trustees set out an ambitious spending programme for the year (compared to previous years). The pandemic disrupted plans and forced a change of direction to online, with the result that some more expensive activities such as conferences did not take place. Replacement activities were not only cheaper but brought in unexpected income. Fundraising by supporters took off as never before and resulted in considerable income. Grants generated by proactive fundraising remained at similar levels to previous years which was felt to be a good achievement as so many funders diverted their giving to Covid-related activities. The overall result was to put the charity on a firm financial position from which to expand its activities in accordance with its objectives.

Financial Position

The gross income of the charity for the year ended 31 March 2021 amounted to £28,391 (2019/20: £15,178) whereas costs for charitable activities were £30,938 (2019/20: £31,844), of which Governance costs were £620 (2019/20: £600). The net deficit for the year was £2,547 (2019/20: deficit £ 16,666). The overall net assets of the company have decreased from £44,596 to £42,049.

Reserves policy

It is the policy of the trustees to maintain unrestricted funds, which are the free reserves of the charity, at the minimum level of £10,000.

Approved by order of the board of trustees on 13 August 2021 and signed on its behalf by:

D E Jillings - Trustee

Independent Examiner 's Report to the Trustees of Pelvic Radiation Disease Association ('the Company')

I report to the charity trustees on my examination of the accounts of the Company for the year ended 31 March 2021.

Responsibilities and basis of report

As the charity's trustees of the Company (and also its directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 ('the 2006 Act')

Having satisfied myself that the accounts of the Company are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of your charity's accounts as carried out under section 145 of the Charities Act 2011 ('the 2011 Act'). In carrying out my examination I have followed the Directions given by the Charity Commission under section 145(5) (b) of the 2011 Act.

Independent examiner's statement

I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe:

1.accounting records were not kept in respect of the Company as required by section 386 of the 2006 Act; or
2.the accounts do not accord with those records; or
3.the accounts do not comply with the accounting requirements of section 396 of the 2006 Act other than any requirement that the accounts give a true and fair view which is not a matter considered as part of an independent examination; or
4.the accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities (applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)).

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 accounts to be reached.

Mary E Ryan, FCCA, CertPFS, DChA

Ark Accountancy, Chartered Certified Accountant, 31 Cheam Road, Epsom, Surrey, KT17 1QX Date:

Statement of Financial Activities for the year ended 31st March 2021

Balance Sheet 31st March 2021 31.3.21 Total funds 31.3.20 Total funds Unrestricted Restricted fund fund Noles FIXED ASSETS Tangible assets 3,142 CURRENT ASSETS Debtors Cash al bank 11)0 100 740 37,318 7,310 44,628 42,687 CREDITORS Amounts falling due within one year (2,579) (2,579) (1,233) NET CURRENT ASSETS 34,739 7,310 42,049 41,454 TOTAL ASSETS LESS CURRENT LIABILITIES 34,739 7,310 42,049 44,596 NET ASSETS 44,5 FUNDS Unreslncted funds Restricted funds 10 34,739 38,022 TOTAL FUND3 42,049 44.596 The charitable company Is enlilled to exemption Irom audit under Section 477 of the Compan5 Act 201K for the year ended 31 March 2021. The members h8ve not required the company to obtain an audit of its financial stalemenls for the year ended 31 March 2021 in accordance wlh Section 476 of the Companies Act 20(. The trustees acknowledge their responsibilities for (a) ensuring that the charitab18 company keeps accounting records that comply with Sections 386 and 387 of the Companies Act 20 and (b) preparing financial statements which give 8 true and fair view of the state of affairs of the charitablg company as al the end of each financial year and of ils sutplus 01 deficit foi each financial year in accordancg with Ihe requiremgnts of Sections 394 and 395 and which othetwise comply with Ihg requirements of tho Companies Acl 2006 relating to ffinanaal sta16menls, so far as applicable lo tha chantablg company. The notes fotm part of these financial statements ntinued... 17

Balance Sheet- continued 31 March 2021 These financial statements have been prepared in accordance with Ihe provisions applicable to charrtable companies subject to the sm811 comp8nies regime_ The financial statements were approved by the Board of Trustees and authonsad for issue on 13 August 2021 and were signed on ils behalf by: 410 J A Webber- Chair of truslees D E Jillings- TNstee The notes fotm part of these financial statements 18

PELVIC RADIATION DISEASE ASSOCIATION Notes to the Financial Statements for the Year Ended 31 March 2021

PELVIC RADIATION DISEASE ASSOCIATION - Notes to the Financial Statements continued for the Year Ended 31 March 2021

PELVIC RADIATION DISEASE ASSOCIATION

Notes to the Financial Statements continued for the Year Ended 31 March 2021

PELVIC RADIATION DISEASE ASSOCIATION - Notes to the Financial Statements continued for the Year Ended 31 March 2021

PELVIC RADIATION DISEASE ASSOCIATION

Detailed Statement of Financial Activities for the Year Ended 31 March 2021

Treated for cancer & living with the consequences?

We give support & information to people experiencing Pelvic Radiation Disease We inform & educate health professionals

website | prda.org.uk office | 0113 278 5405 email | info@prda.org.uk #PelvicRadiationDisease

November 2021