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2021-03-31-accounts

Registered Charity Number: 1165038

The PDA Society

Annual Report and Unaudited Financial Statements

For the year ended 31 March 2021

The PDA Society

Contents Page
Legal and administrative information 1
Trustees’ annual report 2-10
Independent examiner’s report 11
Receipts and payments account 12
Statement of assets and liabilities 13
Notes to the accounts 14-15

VAS Community Accountancy

The PDA Society

Legal and administrative information For the year ended 31 March 2021

Trustees

Sally Russell OBE Chair Debra West Treasurer – resigned 31 August 2021 Victoria Threlfall Secretary, Vice-Chair, Comms and Fundraising Lead Paula Webb Enquiry Line, Events and Safeguarding Lead Hilary Harvey HR, Admin, Training and Forum Lead Jill Davis Education Lead (Appointed October 2020)

Principal Address PO Box 6080 Sheffield S12 9EW

Bankers

HSBC 5 Wimbledon Hill Road Wimbledon London Sw19 7NF

Independent Examiner

Susan Cochrane, FCA Employee of: VAS Community Accountancy The Circle 33 Rockingham Lane Sheffield S1 4FW

1

The PDA Society

Trustees’ annual report

For the year ended 31 March 2021

Structure, governance and management

The Charity is a Charitable Incorporated Organisation, number 1165038 and is operated under the rules of its constitution, the documents of which are dated 5 January 2016. The charity previously operated as an unregistered group. The assets and liabilities of this organisation were transferred to the CIO on 1 April 2016.

Overall management of the charity is the responsibility of the trustees who are elected and co-opted under the terms of the constitution. Day to day project activity is managed and carried out by trustees, self-employed contractors and volunteers.

Objectives and activities

To promote the relief of persons with Pathological Demand Avoidance (PDA) an Autistic Spectrum Disorder, and their families and carers in particular but not exclusively by:

a.) Providing information, advice and support to those persons with PDA, their families and carers including those awaiting diagnosis; and

b.) advancing the education of the general public, in particular those responsible for the care, treatment and diagnosis of PDA by raising awareness in all matters relating to PDA.

Activities during the financial year

5th Anniversary (5th January 2021)

5th January 2021 was the 5-year anniversary since the PDA Society became a registered charity. We launched a survey in October 2020 asking for feedback, to enable us to review our impact to date and shape our services and projects for the future. We published a summary of the main findings and a more detailed report with statistics and comments from respondents, along with a summary of what the PDA Society is planning during 2021. Within these findings we were pleased to hear that our information resources are making a positive difference to the lives of PDA people and their supporters:

We also heard that our work is having a positive impact in terms of improving understanding of an otherwise perplexing presentation:

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The PDA Society

Trustees’ annual report For the year ended 31 March 2021

Comments received from respondents also included the following:

“Because of the PDA Society, and only the PDA Society, as a family we have been able to learn, to breathe, to open our hearts and minds to view a different world. A beautiful world, a world that needs time, support, patience, encouragement, understanding, nurturing, love and laughter.”

“It’s very hard not having the information and support that people with different disorders have and for most my life I have been depressed and suicidal thinking there was something wrong with me, but when I first read about PDA I was reading about myself and it was the first time I’d been able to put my struggles into words. Without the PDA Society I would likely be in an ATU at this rate. Without the PDA Society I would still feel very alone with my struggles, because of the case studies and information I was able to relate to other people for what felt like the first time in my life.”

“As an educational psychologist I have found your information to be invaluable for parents, especially those who have no access to a diagnosis through the medical route. Because of the PDA Society my staff have a much better understanding of the needs of many of the young people who come to our specialist college.”

In response to 80% of respondents telling us that the challenge they'd most like our help with is raising awareness of PDA with the general public, we created and published a short ‘What is PDA?’ video introduction to some essential information about PDA in a quick and easily shareable format.

In addition, we also put together 5 ways to help mark the occasion on the theme of the number 5. This consisted of ideas for everyone to get involved and have fun, whilst helping to raise awareness and vital funds for the charity. Several PDA Society trustees, volunteers and friends also teamed up to do various 5- themed fundraising challenges.

All resources were published on our website and shared on social media and circulated via email.

Website

The website had an average of 30,439 visitors a month and 1,300,661 total views this year (an average of 108,388 views per month).

The website content was updated to reflect the latest thinking and terminology, and with helpful signposting links, throughout the year when relevant. We also updated the design and layout of the homepage and section landing pages.

We created and published the following pages, resources and surveys:

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The PDA Society

Trustees’ annual report (continued) For the year ended 31 March 2021

In preparation for PDA Day 2021, we created and published the following:

We continued to add third party links to our existing Coronavirus support pages as the pandemic progressed throughout the year as and when relevant. These included official government guidance, free resources and other useful links for the PDA community. We also created and published new Coronavirusrelated resources including:

Hidden Disabilities PDA Lanyards and PDA panda wristbands went on sale in our online shop in August 2020 and November 2020 respectively. Panda e-cards were also made available in the shop, for a donation to the PDA Society via a third party eCard website.

We continued to expand and update the third party resources, books, blogs, support groups, events, training and research listed on the website, including international translations of our resources.

Social Media

We have worked hard to have an active social media presence and to share PDA related information, resources and research opportunities to followers and the wider public via Facebook, twitter, Instagram, LinkedIn and YouTube.

Our social media following grew to 51,967 (an increase of 15,285)

The PDA Society’s social media posts gain good engagement with a high number of ‘likes’ and ‘shares’.

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The PDA Society

Trustees’ annual report (continued) For the year ended 31 March 2021

In addition to our day-to-day activity on social media, we also participated in the following social media events, sharing PDA-specific information relating to the topics:

Training

Over these 12 months the PDA Society has:

After someone has attended a training session, people are invited to complete a feedback questionnaire to help us understand what difference the training has made. In this reporting period the average scores out of 10 (with 1 being the lowest and 10 being the highest score) from the responses given were as follows:

Feedback given also included the following positive comments:

“This was phenomenal. It’s all great explaining what a condition is but receiving tools and techniques and methods to try at home with our children is powerful. I raised a complex question at the end and have been advised I will receive a personal direct reply which values me and my enquiry and brings reassurance” (Parent)

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The PDA Society

Trustees’ annual report (continued) For the year ended 31 March 2021

“The training gave myself and the team a real insight into a person with PDA, strategies that we can put in place that may benefit the individual we support. Speaking with was particularly insightful, I understand that it was difficult for him to have a true understanding of what was going on and how things looked. But from the information he shared he really provided us with information from someone with a PDA profile, it was truly informative in everyway”. (Social worker)

“Wealth of trainer’s knowledge and expertise. Fast pace and practical suggestions” (Educator)

Enquiry Line

The PDA Society enquiry line provides information, advice and support to approx. 100 parents, adults and professionals (education, health & social care) per month. This support is given via email, telephone and Skype (if requested from overseas). We have continued to have an increase in enquiries each month.

The enquiry Line recruited 4 Self-Employed contractors to ensure continuity of service during the challenging pandemic. We continued to have the support of 5 Volunteers and Trustee Paula Webb as enquiry line co-ordinator throughout this period.

The coordinator held three enquiry line meetings with the volunteers and contractors to further their training. We had 2 volunteers leave the service. We currently have a team of 4 Contractors and 3 volunteers.

The coordinator provides supervision every 6-8 weeks to each volunteer and ensures the efficient delivery of the enquiry line service, making sure all enquiries are answered within 5 working days. The coordinator undertakes quality control each week, checking a sample of replies from each volunteer and contractor. The coordinator undertakes the authorisation of monthly timesheets and invoices ensuring the time recorded matches the enquiry responses.

The coordinator provides reports for trustees’ meetings and annual reports.

An example of the difference made by the enquiry line to the lives of PDA people and their supporters is given in the following quote, taken from the 5 -year survey report:

“I am especially grateful for the times we have had individual support through the PDA Society helpline - often when we have been at crisis point and completely without other forms of support. We won't forget that - the value of a person who truly understands, who doesn't judge and knows their way through the utter shambles of statutory support service was huge.”

Literature

The distribution of printed information was put on hold during this period due to the Covid-19 pandemic. Our Literature was reviewed and a new What is PDA? Leaflet introduced with the out-of-date material removed. Our current leaflets continued to be available to download free of charge on the website.

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The PDA Society

Trustees’ annual report (continued) For the year ended 31 March 2021

PDA day (15th May 2020)

The theme for PDA Day 2020 was ‘Support’ with a switch in focus (due to the coronavirus pandemic) to supporting our PDA and wider community with a variety of resources including fun PDA Panda activities (colouring sheet, find the panda page and DIY panda ears) to use at home and a website scavenger hunt leading to different sources of support. We shared our life under lockdown survey results. All resources were published on our website (in a PDA Day Newsletter) and shared on social media and circulated via email. We also assisted with the placement of an article in nasen Connect ahead of PDA Day titled “Providing PDA support by Aileen Hosty (nasen Connect)”. And we published a PDA Day summary with a round-up of activities carried out by people all over the world to mark the day.

PDA Development Group

The PDA Society is the voice of parents and adults at the PDA Development Group meetings, though there have been no formal meetings in the past year because of the pandemic. (The PDA Development group includes several practitioners who meet to share information about developments in understanding of the PDA profile). The PDA Society have taken on the secretariat role for the group.

Articles/ news stories

The PDA Society assisted with and consulted on various articles and interviews about PDA including:

Trustee Vikki Threlfall spoke to Julia Hartley-Brewer on talkRADIO about the additional struggles autistic people and their families are facing during the coronavirus pandemic and the online support available – April 2020

Trustee Vikki Threlfall spoke to Catherine Mackie at the BBC about Special Needs parents in survival mode due to COVID 19. The film was show on the local BBC news, and also available on the app and main news pages.

Trustees Paula Webb and Vikki Threlfall spoke to The Great Minds Podcast about the PDA Society, terminology around PDA, helpful approaches, differences between ODD & PDA, EHCPs, working with professionals and more. (March 2021)

We wrote a website news pieces: ‘Care in hospitals is ‘inhumane’.’ about the Care Quality Commission’s ‘Out of sight – who cares?’ review into the use of seclusion and restraint in the care of autistic people and people with a learning disability and/or mental health condition in hospitals. (October 2020)

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The PDA Society

Trustees’ annual report (continued) For the year ended 31 March 2021

Supporting research projects

The PDA Society has circulated details of PDA related research to its members via the website and social media.

The PDA Society also has continued involvement in a project to investigate the much higher numbers of cases of mothers being investigated for ‘Fabricated and Induced Illness (FII) and to work with leading experts in the field to consider possible improvements to the guidance on the topic.

Identification Project

A project was initiated to describe current best practice for clinicians and other practitioners to help them identify PDA in neurodevelopmental assessments. A survey was undertaken of a group active in assessments within both the NHS and independent practice.

Attendance at events

Due to the pandemic the PDA Society did not attend any events in person during this period. However we focused our energies into increasing online support and training to ensure support was available despite the pandemic. We also made sure more of our literature was available to download from our website and our merchandise was available from our online shop.

Positive PDA Summit

Communications for the 2020 Positive PDA Summit included:

PDA Society Conference

Due to the continuing pandemic and restrictions the PDA Society decided that the planned new date for the conference of March 2021 was not appropriate, and this has now been put on hold until the situation stabilises. The PDA Society have instead decided to focus their efforts on improving awareness and understanding of PDA withing the Professional community, including health care, social care and education.

Other activities

We launched a regular giving campaign in September 2020 and a text giving facility in December 2020.

We launched a monthly newsletter in September 2020 and a quarterly professionals’ newsletter in February 2021. Both provide news, resources and events relating to PDA via email subscription. At year end the monthly newsletter had 1,387 subscribers and the professionals’ newsletter had 222 subscribers.

We partnered with Great Minds Together and the NHS Health Education England Autism Peer Education programme in March 2021 – working together to increase understanding of PDA and what helps in order to improve outcomes for individuals and families.

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The PDA Society

Trustees’ annual report (continued) For the year ended 31 March 2021

We supported Independent Social Worker Cathie Long in looking to form a network with likeminded professionals to develop expertise in assessments and advocacy. We’re hoping this network will develop a group of social workers with understanding of PDA & expertise in assessments, advocacy and acting as expert witnesses. (March 2021)

Thank you to our supporters

The PDA Society would like to thank all the people who have supported us by making one off or regular donations, organising fundraising events, helping us to develop literature and information for the website, and helping with the design of graphics and illustrations. We are truly grateful to you all.

Trustee information and meetings

Sally Russell OBE Chair Debra West Treasurer Resigned 31 August 2021 Victoria Threlfall Secretary, Vice-Chair, Comms and Fundraising Lead Paula Webb Enquiry Line, Events and Safeguarding Lead Hilary Harvey HR, Admin, Training and Forum Lead Jill Davis Education Lead (Appointed October 2020)

A total of 10 trustee meetings were held within this financial year.

Volunteers

The number of active volunteers (excluding trustees) is 23 for this period.

Self-employed contractors

The number of paid training facilitators (training facilitators are self-employed) was 16 at 31.03.21. Please note that some of the paid training facilitators also carry out voluntary work with the PDA Society. The PDA Society also pays for admin, training and comms support from two self-employed contractors. The PDA Society now has 4 self-employed contactors for the enquiry line service.

Future Plans

In 2020/21 the PDA Society was fortunate to see growth in income, from £58,939 to £95,666 (including £12,232 of reimbursed conference costs), driven by increased demand for training and several generous individual donations. With a healthy carry-forward balance £84,064 this positive year-end position enabled the PDA Society to appoint its first CEO in July 2021, who will be working with the Board of Trustees to grow the charity’s reach and impact. Planned activities from 2021/22 onwards are expected to include:

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Independent Examiner’s Report to the trustees of The PDA Society (“the Charity”)

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

Responsibilities and basis of report

As the charity trustees of the Trust you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (‘the Act’).

I report in respect of my examination of the Trust’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.

Independent examiner’s statement

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

  1. accounting records were not kept as required by section 130 of the Act; or

  2. the accounts do not accord with those records.

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.

Signed: Susan Cochrane FCA Employee of: VAS Community Accountancy The Circle 33, Rockingham Lane Sheffield S1 4FW

Date: 14/12/2021

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The PDA Society

Receipts & payments account

For the year ended 31 March 2021

Notes
Receipts
Conference receipts
Charitable activities
Donations
2
Grants
Reimbursement of conference costs
Sale of merchandise
Other income
Total receipts
Payments
General administrative expenses
Other professional expenses
Raising funds
Other expenses
Training facilitator
Travel & accommodation
Postage, printing & stationery
Books
Room hire
Other conference costs
Advertising/Promotional
Merchandise
Website
Insurance
Independent Examination fee
Paypal fees
Eventbrite fees- conference
Eventbrite fees- courses
Refreshments
Equipment rental
Total payments
Net receipts/(payments) for the year
Total cash funds brought forward
Total cash funds carried forward		 Unrestricted
funds
£
-
22,158
59,666
-
12,232
1,515
95		 Restricted
funds
£
-
-
-
-
-
-
-		 Total
2021
£
-
22,158
59,666
-
12,232
1,515
95		 Unrestricted
funds
£
10,091
17,509
28,314
-
-
2,061
-		 Restricted
funds
£
-
-
-
964
-
-
-		 Total
2020
£
10,091
17,509
28,314
964
-
2,061
-
95,666 - 95,666 57,975 964 58,939
1,462
23,831
-
125
10,470
-
705
-
-
12,154
152
1,242
299
533
540
114
-
746
-
-		 -
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-		 1,462
23,831
-
125
10,470
-
705
-
-
12,154
152
1,242
299
533
540
114
-
746
-
-		 1,102
12,201
21
172
2,200
5,763
4,904
273
735
14,834
1,034
2,576
2,787
477
480
170
1,469
249
411
27		 -
-
-
-
-
-
964
-
-
-
-
-
-
-
-
-
-
-
-
-		 1,102
12,201
21
172
2,200
5,763
5,868
273
735
14,834
1,034
2,576
2,787
477
480
170
1,469
249
411
27
52,373 - 52,373 51,885 964 52,849
43,293
40,771		 -
-		 43,293
40,771		 6,090
34,681		 - 6,090
34,681
84,064 - 84,064 40,771 - 40,771

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The PDA Society

Notes to the accounts

For the year ended 31 March 2021

1 Receipts & payments account

Receipts and payments accounts are statements that summarise the movement of cash into and out of the organisation during the financial year. In this context "cash" includes cash equivalents, for example, bank accounts where cash can be readily withdrawn to pay for debts as they become due.

Funds

General funds are donations and other income received or generated for the objects of the orgainisation without further specified purpose and are available for general funds without restriction.

Restricted funds are either donations which the donor has specified are to be solely used for particular areas of the charity's work or grant income sought for specified activities.

2 Donations

Donations
Donations Unrestricted
funds
£
59,666
59,666		 Restricted
funds
£
-		 Total
2021
£
59,666		 Unrestricted
funds
£
28,314		 Restricted
funds
£
-		 Total
2020
£
28,314
- 59,666 28,314 - 28,314

3 Restricted funds

There was no restricted income received during the year ended 31 March 2021.

Prior year comparison
CAF America		 Balance
b/fwd
£
-		 Income
£
964		 Expenditure
£
(964)		 Balance
c/fwd
£
-
- 964 (964) -

A grant was received from CAF America to contribute towards the printing costs of PDA literature for distribution.

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The PDA Society

Notes to the accounts

For the year ended 31 March 2021

4 Trustees remuneration, benefits and expenses

One trustee received the following expenses during the financial year (2020: Six trustees), not including those payments listed under the related party transactions.

Travel and Accommodation
Refreshments
Training & resources		 Total
2021
£
-
-
109		 Total
2020
£
2,342
110
-
109 2,452

The following trustees were paid during the financial year for services provided to the organisation as follows:

Name
Services Provided
Jilly Davies
Workshop Facilitation		 Total
2021
£
1,000		 Total
2020
£
-
1,000 -

Trustees donated £120 (2020: £143) before gift aid without conditions.

No other payments other than those shown in this note were paid to trustees.

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