The PSP Association

(A Company limited by guarantee)

Report and Financial Statements

Year ending 31 December 2016

Charity number 1037087

Company number: 2920581

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Table of Contents

The PSP Association report of the trustees for the year ending 31 December 2016 ........................ - 3 -

Chair’s report ..................................................................................................................................... - 3 -

Our purpose and activities ............................................................................................................. - 3 -

PSP and CBD ................................................................................................................................... - 3 -

Review of the Year ......................................................................................................................... - 4 -

Support to Families ........................................................................................................................ - 4 -

Raising Awareness in the Health and Social Services .................................................................... - 4 -

Advocacy and Lobbying .................................................................................................................. - 5 -

Our Volunteers ............................................................................................................................... - 5 -

Research ......................................................................................................................................... - 5 -

Research Network .......................................................................................................................... - 5 -

Completed research studies .......................................................................................................... - 6 -

Clinical Research Fellowships ......................................................................................................... - 6 -

Other funding ................................................................................................................................. - 6 -

Patient Engagement in Research ................................................................................................... - 7 -

Communications ............................................................................................................................ - 7 -

Fundraising ..................................................................................................................................... - 7 -

Financial review ............................................................................................................................. - 8 -

Investment powers and policy ....................................................................................................... - 8 -

Reserves policy and going concern ................................................................................................ - 8 -

Plans for future periods ................................................................................................................. - 9 -

References and administrative details ............................................................................................. - 10 -

The Medical Advisory Panel: ............................................................................................................ - 11 -

Structure, Governance and Management ........................................................................................ - 12 -

Independent Auditor’s Report to the members of The PSP Association ......................................... - 14 -

The PSP Association Statement of Financial Activities for the year ending 31 December 2016 ..... - 16 -

The PSP Association Balance Sheet as at 31 December 2016 .......................................................... - 17 -

The PSP Association Statement of Cash Flows for the year ending 31 December 2016 ................. - 18 -

Notes to the accounts ...................................................................................................................... - 19 -

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The PSP Association report of the trustees for the year ending 31 December 2016

The trustees are pleased to present their annual directors’ report together with the financial

statements of the charity for the year ending 31 December 2016 which are also prepared to meet

the requirements for a directors’ report and accounts for Companies Act purposes.

The financial statements comply with the Charities Act 2011, the Companies Act 2006, the

Memorandum and Articles of Association, and 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 (FRS102) (effective 1

January 2015).

Chair’s report

Our purpose and activities

The purposes of the PSP Association are to: • Promote and sponsor research to improve diagnosis, to fully understand the causes and to

discover a cure or at least disease-modifying treatments for Progressive Supranuclear Palsy (PSP) and Cortico-Basal Degeneration (CBD).

• Support families coping with PSP and CBD by providing support, information and assisting their

access to NHS and other public or voluntary sector assistance. • Develop an awareness, particularly amongst relevant medical professionals and social services

of PSP, CBD and the Association in order to develop and promote best practice when meeting the needs of people and their carers living with these conditions.

The PSP Association (PSPA) was first registered as a company limited by guarantee and as a charity in 1994. It is one of only three charities of any significant size in the world focussing on PSP. The others are the US charity CurePSP+ and the Swedish not-for-profit foundation CBD Solutions. We cooperate with both charities, especially in the research field.

PSP and CBD

Progressive Supranuclear Palsy (PSP) is a neurological condition caused by the progressive death of nerve cells in the brain. There is no treatment to reduce the progression of the disease. The average life expectancy from the onset of symptoms is seven years and current treatments are therefore limited to the management of symptoms. It is often misdiagnosed, most commonly as Parkinson’s Disease. PSP is associated with an over-production of the tau protein in some areas of the brain. The protein forms into clumps (neurofibrillary tangles) that lead to the death of nerve cells, especially in the motor areas of the brain, although the intellect often remains intact. Ssymptoms include :

Falls (often backwards)

Postural Instability

Slowness of movement

Motor Recklessness

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Eye problems due to the rigidity of the eye muscles

Speech slurring and softness

Swallowing problems

Cognitive changes, especially apathy and irritability.

Mood swings. CBD has a similar pathology and progression to PSP. It usually presents similar symptoms to PSP, but one side of the body may be more affected and symptoms may also include tremor. The term PSP in this report should be read as including CBD unless otherwise indicated. The prevalence of PSP is as 6.4 per 100,000 population although many of those affected remain incorrectly or un-diagnosed. Older studies have indicated that CBD has a prevalence of 0.62-0.92 per 100,000 but recent diagnosis rates indicate that this is a significant underestimate. This means at least 5000 people in the UK are living with these conditions at any one time. The diseases are not inherited, although research indicates that some people may have a genetic disposition that makes them more susceptible.

Review of the Year

2016 was year of steady consolidation. By the end of the year, we were supporting 3787 people living with PSP, their families and carers, representing a further record in our 22-year history. This includes 1,689 people diagnosed with PSP. Our dedicated volunteers held 275 local meetings to provide further support to families. Our income limited the number of events we held for health and social care professionals, but we still educated some 1500 Health and Social Care Professionals about PSP directly, and thousands more requested information or accessed the information on our website. Spending on research grew to maximise exciting opportunities generated through our ground-breaking PSP Research Network, which by the end of the year had enrolled some 200 patients onto our PROSPECT study. Total income for the year was £1.47 million, a significant increase from our 2015 total of £1.132 million and we reduced our fundraising costs significantly. Although our income was boosted by a major legacy, it has meant that we can continue to fund our ambitious research budget for 2017.

Support to Families The number of people living with PSP, their families and carers that we support grew by six per cent to 3787 over the year, another historical record. Our Helpline handled over 4200 calls and our Health Unlocked on-line forum now has 565 members. Our six regionally-based Specialist Care Advisers handled a similar number of cases to the Helpline, focussing on often complex case-working to support families. We carried out an extensive and detailed survey of those we support to ensure that we continue to meet the needs of those coping with the conditions, and that our awareness and advocacy work is focussed on areas where the NHS and Social Services fall short. The survey revealed the high regard that families held for the PSP Association and the professional support that we provide, but a full analysis will be available in early 2017 to help implement further service improvements.

Raising Awareness in the Health and Social Services

Our new PSP and CBD Guide for Occupational Therapists added to the range of information available to health and social care professionals. Of even greater significance, we developed and issued our

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“Red Flags” document to over 10,000 GPs, identifying early symptoms of PSP and hence the need for an early referral to a neurologist. Our Annual Study Day attracted 200 consultants, GP’s, physiotherapists, PD Nurses, speech and language therapists, social workers and commissioners. Our Specialist Care Advisers educated a further 1300 Health and Social Care professionals at other events throughout the year. We received 1500 requests for our information leaflets and thousands more were downloaded from our website.

Advocacy and Lobbying We continued to lobby Government to improve NHS and Social Care provision for those with neurological disorders and the elderly by working with 13 like-minded organisations. A particular focus has been to improve access to Continuing Health Care by our participation in the CHC Alliance.

Our Volunteers

The Association continues to increase the support we give to families while reducing the financial demands on our donors, and our team of volunteers play a key role in achieving that aim. Our 40 Local Groups led by volunteers were supplemented by new Groups in Poole, Carmarthenshire, Worthing and South Oxfordshire. 275 Local Group meetings were held, attended by more than 1600 Association Members. Our Helpline volunteers enabled the continued expansion of our Helpline operating hours into the evening with the introduction of 7pm to 9pm opening. We successfully piloted our Volunteer Support Worker programme during the year, enabling the Association to visit families for the first time to offer support and information. Our volunteers led our Awareness Week campaign to deliver our Red Flags document GPs, a key part of our ongoing campaign to achieve earlier the referral and hence diagnosis of PSP. To support our volunteers, we are piloting a new online training package with 12 new recruits, and more than 20 volunteers attended our annual workshop to learn more about CBD and its impact on families.

Research

Research Network Our Research Network is the only in the world for PSP, offering a network of centres for studies and treatment trials. The PROSPECT study to determine disease progression formed its core task during 2016 and 200 people with PSP or CBD had been recruited into the programme by the end of the year. Primary Centres. All seven of PROSPECT’s primary centres (London, E. Sussex, Cambridge, Oxford, Newport, Manchester and Newcastle-upon-Tyne) are now fully operational and 54 people with PSP or CBD have joined the longitudinal cohort arm of the study. This will contribute to earlier diagnosis and ultimately provide a disease progression baseline for the assessment of the success of future clinical trials. Secondary Centres. 13 secondary centres were established in 2016 for the cross-sectional arm of PROSPECT. This is open to anyone with a diagnosis and can be completed at a local GP surgery. 146 participants with PSP or CBD had been recruited by the start of 2017, more than twice the original

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recruitment target. The blood samples and clinical information provided will also support future genetic and biomarker studies. Further Use of the Research Network. By the end of the year, the Network’s infrastructure and the PSP Association’s patient register had attracted significant interest from two major international pharmaceutical companies who wish to develop treatments for Alzheimer’s using the pure tauopothy characteristics of PSP as a test bed. The first clinical trial may start in 2017. PROSPECT has also spawned a number of collaborations and additional sub-projects, meaning that PSP Association’s original grant has provided seed funding for more extensive research. This includes a European-wide registry of CBD patients funded by CBD Solutions (Sweden) and input into the CurePSP-funded Genetics Consortium. Such funding synergy with our international partners is encouraging. Financial Commitment. Our current commitment to PROSPECT and its associated imaging and CSF biomarker studies is a further £548,000 up to mid-2019.

Completed research studies

Two PSPA-funded projects were completed in 2016:

A study of the use of PET scanning techniques to visualise the disease-associated protein tau in the brains of people living with PSP

A cell model study of the protein PERK and its role in PSP. PET Scanning. Prof Rowe’s team at Cambridge were able to demonstrate clear visualisation of tau quantity and distribution in the brains of people with PSP and show that this is sufficiently distinct from the pattern seen in Alzheimer’s Disease to allow the two conditions to be separately identified by PET. This offers a significant step forward in monitoring disease progression and the potential to shorten future drug trials. We are delighted that the resulting paper was accepted by the highly respected journal “Brain” for publication in early 2017. The Role of PERT protein in PSP. Dr de Silva’s final report on the role of the PERT protein in PSP has been submitted for peer review.

Clinical Research Fellowships We continue to invest in the future of the research workforce and two PSP research fellows started in 2016. We have committed £265,000 to these Fellowships over the next three years. Dr Diane Swallow began work in Aberdeen on her three-year study of the issues surrounding diagnosis and care standards, during which she will also support recruitment to PROSPECT. This fellowship is jointly funded by PSPA and the Scottish Chief Scientist Office. Dr Edwin Jabbari took up the post of Sarah Koe Clinical Research Fellow at University College London, where he will focus on the use of biomarkers to track and ultimately predict disease progression.

Other funding We donated £20,000 to the Queen Square Brain Bank for Neurological Disorders, which holds one of the world’s largest collections of brains donated by individuals with PSP and provides thousands of tissue samples to many high calibre research projects.

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We donated £6,780 to an international task force of world-leading experts in PSP, enabling them work towards the establishment of clear, up-to-date diagnostic criteria for the disease. These ‘gold standard’ diagnostic guidelines will be published in 2017.

Patient Engagement in Research

We continued to facilitate contact between researchers seeking study participants and people with PSP and CBD wanting to take part in research. At the end of 2016 our register of interest in research participation included 89 people (including healthy controls), 23 of whom were added during the year. We intend to build on this in 2017 and increase engagement between our members and the research community, via social media, guest blog posts and visits by researchers to local group meetings.

Communications Communicating to our diverse range of stakeholders using a full range of tools remained an important focus in 2016. In July, we began to review the website with aim of making it, brighter, more user friendly with clearer navigation, and ultimately be more accessible and informative to people affected by PSP and CBD, their families and carers. Design was complete by the end of the year and pilot testing had commenced with the aim of going live in early 2017. Our presence on social media, primarily Facebook and Twitter, continued to be provide many opportunities to engage with our communities and beyond. Facebook ‘likes’ grew by 18% to 6182 at close of year and Twitter followers by 18% to 2724. With the help of our supporters across the UK, who are willing share their own inspirational stories, media exposure, both at local and national level gained momentum with stories appearing in the Observer, Yorkshire Post, Manchester Evening News and the Scottish Sunday Post and many other newspapers. The theme for Awareness Week 2016 was Red Flags, aimed to help GPs recognize some of the specific symptoms of PSP to help ensure an early referral to an appropriate neurologist. The Red Flag fact sheet was delivered to 10,000 GP practices. Hope the Bear, the PSPA mascot, continued to travel the globe with our supporters and raising awareness of PSP and CBD in many counties, cities and major events.

Fundraising Due to the external environment, the fundraising landscape remains challenging for smaller organisations. Our Charitable Trust and Foundation income in particular was disappointing but we increased the number of our trust applications by almost 40% during the year as well as conducting a quality review. Due to the normal lag in responses, we expect to see an improved result next year. However, partly due to our earlier campaigns to encourage legacies, bequests from seven generous benefactors enabled us to exceed our overall financial target for the year. We continued to find engaging and inspiring ways to get our people motivated and raising funds. Our amazing supporters undertook a diverse range of fundraising activities and events to raise funds

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for the work we undertake. These included 500 events organized by supporters – each event different and each raising vital funds and awareness. We also had 72 participants in the Virgin London Marathon and seven cyclists taking part in the Surrey 100 Challenge.

Financial review The Association recorded a surplus of £54,273 in 2016. The main sources of income to the Association were: voluntary fundraising & events £422,000, income from trusts £190,000 and in memoriam £156,000. Legacy income was £406,500 which is a vast improvement on prior year. Our sincere thanks to all the Charitable Trusts and Foundations that have supported our work, not

just in the past year, but in many cases for several years. Their continued interest and support is a

huge encouragement to us.

Trusts that supported our work in 2016 included: Peacock Charitable Trust; Garfield Weston

Foundation; Robertson Trust; Cleopatra Trust; The Epigoni Trust; The Constance Travis Charitable

Trust; Souter Charitable Trust; The Charles and Elsie Sykes Trust; The Sir James Knott Trust.

The Association spent £261,700 on research activities compared to £268,800 in 2015. We continue to support the work of the Research Network spanning seven centres throughout the UK. Online giving saw significant growth with £382,724 donated online in 2016, which is in line with the previous year. Our 72 London Marathon runners raised a magnificent total of £161,688. We were delighted to thank many of our runners and their supporters in person at a wonderful celebratory post-race reception, manned by volunteers. Thanks to our generous supporters, raffles and direct mail appeals raised a total of £50,663.

Investment powers and policy The trustees, having considered the research funding requirements, combined with the operating cash needs of the Association and the prevailing low deposit interest rates available in the market, decided to retain liquid funds in the main bank account.

Reserves policy and going concern Reserves are needed to bridge the gap between spending and income received from donations and fundraising activities. The trustees consider that the level of reserves required is equal to 4 months future fixed costs. At the end of the accounting period the level of cash and cash equivalents was approximately 5 months budgeted fixed costs. The cash-flow inflows from operating activities of £152,976 reflects the positive impact of our legacy income.

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Plans for future periods We have set an ambitious fundraising target for 2017 that is underpinned by increasing the number of families and supporters that we are in contact with, while at the same time aiming to keep our cost to fundraising ratio below 25%. A new website will form a key element and is currently under test. The results of our extensive 2016 Patient Survey will be analysed and turned into an action plan to further improve our support to families and to focus our awareness work among health professionals. We will strengthen our links with other UK brain disease charities to run more joint events and to identify other efficient methods of working together. We will also strengthen our international links with other PSP organisations to ensure the inevitably limited global research funding for PSP is spent to best effect. We will also actively engage with the pharmaceutical industry to ensure that, when considering treatment trials, they are fully aware of the benefits of our large PSP patient register and our PSP Research Network. Finally, my personal thanks to all our Volunteers, part and full time staff, Trustees and the Medical Advisory panel for their hard work and dedication to the charity over the last 12 months. I look forward to working with all the PSPA team to achieve our goals in the year ahead. Simon RB Koe

Chair

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References and administrative details Charity number: 1037087 Company number: 2920581 Registered Office: 167 Watling Street West, Towcester, Northants. NN12 6BX Our advisers Auditors Harris & Co 2 Pavilion Court, 600 Pavilion Drive, Northampton, NN4 7SL Bankers Lloyds Bank 1-3 London Rd, East Grinstead, RH19 1AH Finance Director The FD Centre The Street, Lydiard Millicent, Swindon, SN5 3LU Directors and trustees The directors of the charitable company (the charity) are its trustees for the purpose of charity law. The trustees and officers serving during the year and since the year end were as follows: Key management personnel The PSP Association: Trustees and Directors Chair: SRB Koe Co-opted Trustees SE Denton Professor Sir Colin Blakemore T Orchard C Perry J Evans S Marshall S Mackenzie A Oglethorpe Secretary JFG Logan (Resigned 9th December 2016) Secretary J Chandler (Appointed 15th November 2016) Key management personnel: Senior managers of The PSP Association: Chief Executive Officer JFG Logan (Resigned 9th December 2016) Chief Executive Officer J Chandler (Appointed 15th November 2016) Director of Development C Wood Director of Information & Support P Daniels

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The Medical Advisory Panel: Chair: Prof AJ Lees Members: Prof Y Agid (France) Prof L Golbe (USA) Prof I Litvan (USA) Prof Dr W Poewe (Germany/Austria) Prof N Quinn (UK) Prof S Reich (USA) Prof M Rosser (UK) Prof E Tolosa (Spain) Prof N Wood (UK) Prof D Burn (UK) Dr P Damier (France) Honorary member: Prof J Steele (Canada/Guam) Associate member: Dr D Machado (Portugal) Medical co-ordinator (Europe): Dr P Pramstaller (Italy) Research Committee Chair: Prof Dame Pam Shaw (Sheffield) - resigned Nov 2015

Prof Paul Ince (Sheffield) – appointed Dec 2015 Members: Prof Paul Ince (Sheffield) Prof Jim Lowe (Nottingham) Prof Michel Goedert (Cambridge) Prof Giovanna Mallucci (Leicester) Prof Hugh Perry (Southampton) Prof Siddarthan Chandran (Edinburgh) Prof Paul Bolam (Oxford) Prof Stuart Pickering Brown (Manchester)

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Structure, Governance and Management Governing Document

The PSP Association is a company limited by guarantee governed by its Memorandum and Articles of Association dated 19 April 1994. It is registered as a charity with the Charity Commission.

Appointment of trustees

As set out in the Articles of Association the chair of the trustees is nominated by ordinary resolution presented to The Executive Committee for a period of five years. The other trustees are appointed by ordinary resolution to The Executive Committee for a term of three years.

Trustee induction and training

New trustees undergo an orientation day to brief them on their legal obligations under the charity and company law, the Charity Commission guidance on public benefit, and inform them of the content of the Memorandum and Articles of Association, the committee and decision-making processes, the business plan and recent financial performance of the charity. During the induction day they meet key employees and other trustees. Trustees are encouraged to attend appropriate external training events where these will facilitate the undertaking of their role.

Organisation

The board of trustees, which can have up to 15 members and not less than 5, administers the charity. The board normally meets quarterly and there are sub-committees covering nomination and remuneration, plus finance, audit and risk, which normally meet quarterly. A Chief Executive is appointed by the trustees to manage the day-to-day operations of the charity. To facilitate effective operations, the Chief Executive has delegated authority, within terms of delegation approved by the trustees, for operational matters including finance and employment.

Related parties and co-operation with other organisations

None or our trustees receive remuneration or other benefit from their work with the charity. Any connection between a trustee or senior manager of the charity and a related party must be disclosed to the full board of trustees. In the current year no such related party transactions were reported.

Pay policy and senior staff

The directors consider the board of directors, who are the Association’s trustees, and the senior management team comprises the key management personnel of the charity in charge of directing and controlling, running and operating the Association on a day to day basis. All directors give their time freely and director received remuneration in the year. Details of directors’ expenses and related party transactions are disclosed in note 6 to the accounts.

The pay of the senior staff is reviewed annually and normally increased in accordance with average earning.

Risk management

The trustees have a risk management strategy which comprises:

an annual review of the principal risks and uncertainties that the charity faces;

the establishment of policies, systems and procedures to mitigate those risks identified in the annual review; and

the implementation of procedure designed to minimise or manage any potential impact on the charity should those risks materialise.

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This work has identified that financial sustainability is the major risk to the charity. A key element of the management of financial risk is a regular review of available liquid funds to settle debts as they fall due.

Trustees’ responsibilities in relation to the financial statements

The charity trustees (who are also the directors of The PSP Association for the purposes of company law) are responsible for preparing a trustees’ annual report and financial statements in accordance with the applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

Company law requires the charity trustees to prepare financial statements for each year which give a true and fair view of the state of affairs of the charitable company and of the incoming resources and application of resources, including income and expenditure, of the charity for that period. In preparing the financial statements, the trustees are required to:

select suitable accounting policies and then apply them consistently;

observe the methods and principles in the Charities SORP;

make judgements and estimates that are reasonable and prudent;

state whether applicable UK accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements;

prepare the financial statements on a going concern basis unless it is inappropriate to presume that the charity will continue in business.

The trustees are responsible for keeping proper accounting records that disclose with reasonable accuracy at any time the financial position of the charity and to enable them to ensure that the financial statements comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the charity and hence taking reasonable steps for the prevention and detection of fraud and other irregularities.

The trustees are responsible for the maintenance and integrity of the corporate and financial information included on the charitable company’s website. Legislation in the United Kingdom governing the preparation and dissemination of financial statement may differ from legislation in other jurisdictions.

Statement as to the disclosure to our auditors

In so far as the trustees are aware at the time of approving our trustees’ annual report:

there is no relevant information, being information needed by the auditor in connection with preparing their report, of which the charity’s auditor is unaware, and

the trustees, having made enquiries of fellow directors and the charity’s auditor that they ought to have individually taken, have each taken all steps that he/she is obliged to take as a director in order to make themselves aware of any relevant audit information and to establish that the auditor is aware of that information.

By order of the board of trustees

SRB Koe (Chair)

11 April 2017

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Independent Auditor’s Report to the members of The PSP Association

We have audited the financial statements of The PSP Association for the year ended 31 December 2016 which comprise Statement of Financial Activities, the Summary Income and Expenditure Account, the Balance Sheet, the Cash Flow Statement and the related notes. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice) including FRS 102, the Financial Reporting Standard applicable in the UK and Republic of Ireland.

This report is made solely to the charitable company’s members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006. Our audit work has been undertaken so that we might state to the charitable company’s members those matters we are required to state to them in an auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charitable company and the charitable company’s members as a body, for our audit work, for this report, or for the opinions we have formed.

Respective responsibilities of trustees and auditor

As explained more fully in the Trustees’ Responsibilities Statement set out on page 14, the trustees (who are also the directors of the charitable company for the purposes of company law) are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view.

Our responsibility is to audit and express an opinion on the financial statements in accordance with applicable law and International Standards on Auditing (UK and Ireland). Those standards require us to comply with the Auditing Practices Board’s Ethical Standards for Auditors.

Scope of the audit of the financial statements

An audit involves obtaining evidence about the amounts and disclosures in the financial statements sufficient to give reasonable assurance that the financial statements are free from material misstatement, whether caused by fraud or error. This includes an assessment of: whether the accounting policies are appropriate to the charitable company’s circumstances and have been consistently applied and adequately disclosed; the reasonableness of significant accounting estimates made by the trustees; and the overall presentation of the financial statements. In addition, we read all the financial and non-financial information in the Trustees’ Annual Report to identify material inconsistencies with the audited financial statements and to identify any information that is apparently materially incorrect based on, or materially inconsistent with, the knowledge acquired by us in the course of performing the audit. If we become aware of any apparent material misstatements or inconsistencies we consider the implications for our report.

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Opinion on financial statements

In our opinion the financial statements:

give a true and fair view of the state of the charitable company’s affairs as at 31 December 2016, and of its incoming resources and application of resources, including its income and expenditure, for the year then ended;

have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and

have been prepared in accordance with the requirements of the Companies Act 2006.

Opinion on other matter prescribed by the Companies Act 2006

In our opinion the information given in the Trustees’ Annual Report for the financial year for which the financial statements are prepared is consistent with the financial statements.

Matters on which we are required to report by exception

We have nothing to report in respect of the following matters where the Companies Act 2006 requires us to report to you if, in our opinion:

adequate accounting records have not been kept or returns adequate for our audit have not been received from branches not visited by us; or

the financial statements are not in agreement with the accounting records and returns; or

certain disclosures of trustees’ remuneration specified by law are not made; or

we have not received all the information and explanations we require for our audit.

……………………………..

Phillip Harris BA FCA 2 Pavilion Court

(Senior Statutory Auditor) 600 Pavilion Drive

For and on behalf of Northampton Business Park

Harris & Co Chartered Accountants Northampton

and Statutory Auditors NN4 7SL

11 April 2017

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The PSP Association Statement of Financial Activities (including Income and Expenditure Account) for the year ending 31 December 2016

The statement of financial activities includes all gain and losses recognised in the year. All of the above amounts relate to continuing activities. The notes on pages 19-25 form part of these financial statements.

Unrestricted Restricted Total funds Total funds

Note Funds Funds 2016 2015

£ £ £ £

Income and endowments from:

Donations and legacies 3 1,406,047 0 1,406,047 1,069,763

Other trading activities 19,081 0 19,081 27,411

Investments 0 0 0 0

Other 42,164 0 42,164 34,525

Total 1,467,293 0 1,467,293 1,131,699

Expenditure on:Raising Funds 281,082 0 281,082 347,838

Charitable activities 4 1,084,587 0 1,084,587 994,973

Other 47,351 0 47,351 40,734

Total 1,413,020 0 1,413,020 1,383,545

Net income/(expenditure) 54,273 0 54,273 (251,846)

Net movement in funds 54,273 0 54,273 (251,846)

Reconciliation of funds:Total funds brought forward 727,238 31,204 758,442 1,010,288

Total funds carried forward 781,511 31,204 812,715 758,442

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The PSP Association Balance Sheet as at 31 December 2016

(Registered Number:2920581)

The trustees have prepared these accounts in accordance with section 398 of the Companies Act 2006 and section 138 of the Charities Act 2011. These accounts are prepared in accordance with the special provision of Part 15 of the Companies Act relating to small companies and constitute the annual accounts required by the Companies Act 2006 and are for circulation to members of the company.

The notes on pages 19-25 form part of these financial statements.

SRB Koe Simon Koe, Chair of trustees on behalf of the trustees Approved by the trustees on 11 April 2017

Note

2016 2015

£ £

Fixed assets:

Tangible assets 10 501,859 511,069

Total fixed assets 501,859 511,069

Current assets:

Debtors 11 19,838 16,230

Cash at bank and in hand 489,507 337,951

Total current assets 509,345 354,181

Liabilities:

Creditors: Amounts falling due within one year 12 (198,489) (106,808)

Net current assets or liabilities 310,856 247,373

Net asset or liabilities excluding pension asset or liability 812,715 758,442

Total net assets or liabilities 812,715 758,442

The funds of the charity:

Restricted income funds 31,204 31,204

Total unrestricted funds 781,511 727,238

Total charity funds 812,715 758,442

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The PSP Association Statement of Cash Flows for the year ending

31 December 2016

The notes on pages 19-25 form part of these financial statements.

These financial statements were approved by the members of the committee on the 11 April 2017 and are signed on their behalf by: Ms S Mackenzie Trustee Director 11 April 2017

2016 2015

Note £ £

Cash flows from operating activities:

Net cash provided by (in use) operating activities 16 152,976 (214,922)

Application of cash:Purchases of property, plant and equipment 10 (1,420) (3,430)

(1,420) (3,430)

Net increase/(decrease) in cash 151,556 (218,352)

Cash at bank and in hand less overdrafts at the beginning of the year 412,951 631,303

Change in cash and cash equivalents due to exchange rate movements 0 0

Cash at bank and in hand less overdrafts at year end 17 564,507 412,951

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Notes to the accounts 1. ACCOUNTING POLICIES

The principal accounting policies adopted, judgements and key sources of estimation uncertainty in the preparation of the financial statements are as follows: a) 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 UK and Republic of Ireland (FRS 102) (effective 1 January 2015) - (Charities SORP (FRS 102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Companies Act 2006. The PSP Association meets the definition of a public benefit entity under FRS 102. Assets and Liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s). b) Preparation of the accounts on a going concern basis

The Association reported a cash inflow of £152,976 for the year. The trustees are of the view that based on the budgeted cash flow forecast, the charity will have available liquid funds to settle debts as they fall due beyond the next accounting period.

c) Income

Income is recognised when the charity has entitlement to the funds, it is probable that the income will be received and the amount can be measured reliably. Income from government and other grants, whether ‘capital’ grants or ‘revenue’ grants, is recognised when the charity has entitlement to the funds, any performance conditions attached to the grants have been met, it is probable that the income will be received and the amount can be measured reliably and is not deferred. For legacies, entitlement is taken as the earlier of the date on which either: the charity is aware that probate has been granted, the estate has been finalised and notification has been made by the executor(s) to the Trust that a distribution will be made, or when a distribution is received from the estate. Receipt of a legacy, in whole or in part, is only considered probable when the amount can be measured reliably and the charity has been notified of the executor’s intention to make a distribution. Where legacies have been notified to the charity, or the charity is aware of the granting of probate, and the criteria for income recognition have not been met, then the legacy is a treated as a contingent asset and disclosed if material. d) Donated services and facilities Donated professional services and donated facilities are recognised as income when the charity has control over the item, any conditions associated with the donated item have been met, the receipt of economic benefit from the use by the charity of the item is probable and that economic benefit can be measured reliably. In accordance with the Charities SORP (FRS 102), the general volunteer time of the Friends is not recognised and refer to the trustees’ annual report for more information about their contribution.

- 20 -

On receipt, donated professional services and donated facilities are recognised on the basis of the value of the gift to the charity which is the amount the charity would have been willing to pay to obtain services or facilities of equivalent economic benefit on the open market; a corresponding amount is then recognised in expenditure in the period of receipt. e) Interest receivable 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. f) Fund accounting Unrestricted funds are available to spend on activities that further any of the purposes of charity. Designated funds are unrestricted funds of the charity which the trustees have decided at their discretion to set aside to use for a specific purpose. Restricted funds are donations which the donor has specified are to be solely used for particular areas of the Trust’s work or for specific artistic projects being undertaken by the Trust. g) Expenditure and irrecoverable VAT 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. Expenditure is classified under the following activity headings: Costs of raising funds comprise all costs attributed to the fund raising activities undertaken, including support costs. Expenditure on charitable activities includes the costs information and support events and other educational activities undertaken to further the purposes of the charity and their associated support costs. Other expenditure represents those items not falling into any other heading. Irrecoverable VAT is charged as a cost against the activity for which the expenditure was incurred. h) Tangible fixed assets Tangible fixed assets are recorded at cost, including incidental costs of acquiring the asset. Depreciation is provided so as to write off the cost of the fixed asset (with the exception of freehold land), less its estimated residual value, over their expected useful lives using the following basis: Freehold buildings 50 years straight line Fixtures and fittings (furniture) 12.5% straight line Fixtures and fittings (electrical equipment) 20% straight line Computer software & equipment 33% straight line Freehold land is not depreciated. No depreciation is provided on freehold buildings in the year of purchase. i) Cash at bank and in hand

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Cash at bank and cash in hand includes cash and short term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit or similar account. j) 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. k) Financial instruments The Association 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.

2. Legal status of the Association The Association is a company limited by guarantee and has no share capital.

3. Income from donations and legacies Income from donations and legacies was £1,406,047 (2015: £1,069,763) which was all unrestricted.

The Association benefits greatly from the involvement and enthusiastic support of its many volunteers, details of which are given in our annual report. In accordance with FRS 102 and the Charities SORP (FRS 102), the economic contribution of general volunteers is not recognised in the accounts.

2016 2015

£ £

Voluntary fundraising 422,417 462,254

Legacies 406,508 17,000

Donor Trust 190,482 234,462

In Memorium 156,304 156,190

Personal donations 49,922 49,196

Direct mail 50,663 61,348

Unsolicited donations 59,380 45,509

Major donors 67,296 33,615

Corporate 3,076 10,189

1,406,048 1,069,763

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4. Analysis of expenditure on charitable activities

5. Net income/(expenditure) for the year

6. Analysis of staff costs, trustee remuneration and expenses, and the cost of key management personnel 1 employee had employee benefits (excluding employer pension costs) in excess of £60,000 (2015: 1). One employee had benefits in the range £70,000 to £80,000. The charity trustees and key management received no personal remuneration benefits during the year (2015: £nil). No charity trustees received payment for professional or other services supplied to the charity (2015: £nil).

During the year, the charity agreed to pay compensation for loss of office in the sum of £18,905 to one employee. The amount paid related to the current period and was therefore included in current year salaries & wages costs. Trustees were reimbursed expenses during the year £2,826 (2015: £1,631)

Research

activities

Info & Support

costs

Volunteering

costs

Total

2016

Total

2015

Note £ £ £ £ £

Wages & salaries 6 51,084 407,845 60,087 519,016 483,992

Purchases 156,685 120,841 13,687 291,213 257,465

Awareness 359 110,111 5,347 115,817 120,563

Consultancy Fees 35,678 54,950 75 90,703 60,208

Facilities & infrastructure 6,845 15,648 7,248 29,741 37,529

IT & communications 9,194 24,628 33,822 30,420

Bank charges & interest 526 742 211 1,479 1,451

Insurance 1,290 1,506 2,796 3,345

261,661 736,271 86,655 1,084,587 994,973

This is after charging

Dec-16 Dec-15

£ £

Depreciation 10,630 12,007

Auditors' remuneration:

- audit of the financial statements 2,340 4,140

Dec-16 Dec-15

£ £

Salaries and wages 688,545 628,862

Holiday pay accrual 4,255 1,105

Social security costs 66,427 63,307

Pension contributions 2,250 0

761,478 693,274

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7. Staff numbers

8. Related party transactions There were no related party transactions during the year

9. Corporation taxation The charity is exempt from tax on income and gains falling within section 505 of the Taxes Act 1988 or section 252 of the Taxation of Chargeable Gains Act 1992 to the extent that these are applied to its charitable objects.

10. Tangible fixed assets

Dec-16 Dec-15

Trustees expense payments £ £

Travel - paid to 2 trustees 1,906 1,315

Accommodation - paid to 1 trustee 920 316

2,826 1,631

Dec-16 Dec-15

No. No.

Number of administrative staff 17 16

Number of management staff 4 4

21 20

Freehold

Property

Computer

Equipment

Fixtures&

FittingsTotal

£ £ £ £

COST

At 31 December 2015 574,773 52,331 54,390 681,494

Additions - 1,420 0 1,420

Disposals - - - 0

At 31 December 2016 574,773 53,751 54,390 682,914

DEPRECIATION

At 31 December 2015 68,000 49,967 52,458 170,425

Charge for the year 8,000 1,835 795 10,630

Eliminated on disposals - - - 0

At 31 December 2016 76,000 51,802 53,253 181,055

NET BOOK VALUE

At 31 December 2016 498,773 1,949 1,137 501,859

At 31 December 2015 506,773 2,364 1,932 511,069

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11. Debtors

12. Creditors: amounts falling due within one year

13. Analysis of charitable funds

The research fund was created to promote and sponsor research to improve diagnosis, to fully understand the causes and to discover a cure or, at least, disease-modifying treatments for PSP and CBD.

14. Analysis of net assets between funds

15. Contingent assets – legacy income As at 31 December 2016 the charity had received no notifications of any legacies

Dec-16 Dec-15

£ £

Gift aid receivable 5,879 2,749

Prepayments and accrued income 13,959 13,481

19,838 16,230

Dec-16 Dec-15

£ £

Taxation and social security 22,931 17,390

Trade creditors 39,303 41,705

Accruals 30,324 5,731

Research provision 105,931 41,982

198,489 106,808

Balance

1 January

2016

Incoming

resources

Resources

expendedTransfers

Funds

31 December

2016

£ £ £ £ £

General fund 727,238 1,467,293 (1,413,020) 0 781,511

Analysis of movement in restricted funds

Balance

1 January

2016

Incoming

resources

Resources

expendedTransfers

Funds

31 December

2016

£ £ £ £ £

Research fund 31,204 0 0 0 31,204

General

Fund

Restricted

FundsTotal

£ £ £

Tangible fixed assets 501,859 501,859

Cash at bank and in hand 458,303 31,204 489,507

Other net current assets (178,651) (178,651)

Total 781,511 31,204 812,715

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16. Reconciliation of net movement in funds to net cash flow from operating activities

17. Analysis of cash and cash equivalents

18. Indemnity insurance The Charity paid for the insurance premiums to indemnify Directors and senior staff from any loss arising from neglect or defaults of Directors or staff and any consequent loss. The cost to the Charity was £1,238 (2015: £1,015).

2016 2015

£ £

Net income/(expenditure) for the reporting period (as per the statement

of financial activities) 54,273 (251,846)Adjustments for:

Depreciation charges 10,630 12,007

(Increase)/decrease in debtors (3,606) (3,089)

Increase/(decrease) in creditors 91,679 28,006

Net cash provided by (used in) operating activities 152,976 (214,922)

2016 2015

£ £Cash in hand 489,507 337,951

Notice deposits (less than 3 months)

Overdraft facility repayable on demand 75,000 75,000

Total cash and cash equivalents 564,507 412,951