## **Trustees’ Annual Report for the period**
**From 1.4.23 Period start date To 30.06.24 Period end date Charity name: Forgotten Patients, Overlooked Diseases**
## **Charity registration number: 1202442**
## **Objectives and Activities**
||SORP reference||
|---|---|---|
|Summary of the purposes of
the charity as set out in its
governing document|Para 1.17|The Trustees of Forgotten Patients, Overlooked
Diseases (FPOD) present their annual report and
accounts for the first 15 months of the CIO’s
existence, and confirm that reporting complies with
FPOD’s governing document, Charities SORP (FRS
102), and relevant legislation.
FPOD aims to develop resources for people with
medically unexplained symptoms (MUS), overlooked
health issues, or common unresolved health
problems; provide support/signposting for patients &
families not being helped elsewhere; facilitate or
deliver research, and support the dissemination and/
or application of the useful results of such, for the
public benefit; promote knowledge in, and advance
knowledge of medically unexplained symptoms,
overlooked health issues, or common unresolved
health problems. The term “overlooked diseases”
refers to conditions for which there may be limited
medical education or interest among healthcare
professionals, providers, researchers, industry or
government bodies.
FPOD helps people with complex symptoms to find a
diagnosis and access support. Modern healthcare can
do so much, yet some people with undiagnosed
complex symptoms may not receive potentially
beneficial health interventions. Even people with
common diseases can be overlooked. Organizations
exist to support individuals with specific rare
diseases, but those with unrecognised or incorrectly
categorised diseases lack the support that disease-
specific organizations can provide.
FPOD’s charitable activities aim to change that
situation, by
• developing practical, accessible resources for
people trying to cope with the uncertainty of
overlooked health issues
• providing support/signposting for patients and
families who are not being helped elsewhere
• facilitating, sponsoring or delivering research
• promoting education
• encouraging the adoption of research findings.|
|Summary of the main
activities in relation to those
purposes for the public
benefit, in particular, the
activities, projects or
services identified in the
accounts.|Para 1.17 and
1.19|FPOD’s activities focussed on advancing knowledge
of MUS, for those personally affected by MUS, and
for their healthcare providers. As well as helping to
raise general awareness of MUS and the often
protracted search for diagnosis experienced by some
patients, FPOD’s activities increased the visibility of
the charity, and generated significant feedback.
Activities included -
• free educational webinar “Forgotten Patients,
Overlooked Diseases and Lost Health Solutions”.
• “Medically Unexplained Symptoms” conference
• publications in professional journals
• production of a patient guide “How to make the
most of your GP visit”
• a survey relating to hyper-mobility
• Engagement with EURORDIS (European
Organisation for Rare Diseases
_Note: MUS is the term used in FPOD’s Constitution._
_However there are other terms, such as persistent_
_physical symptoms (PPS), used with reference to the_
_long journey in search of diagnosis, which is_
_experienced by some patients._|
|---|---|---|
|Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit|Para 1.18|In setting objectives, trustees considered the Charity
Commission’s guidance on public benefit. FPOD’s
charitable activities benefit those affected by
medically unexplained symptoms, overlooked health
issues, or common unresolved health problems. As
well as individuals who are personally affected, this
includes their families and/or carers, and medical
professionals involved in their treatment.|
## **Additional information (optional)**
You may choose to include further statements where relevant about:
||SORP reference||
|---|---|---|
|Policy on grant making|Para 1.38|Grant-making is not part of FPOD’s charitable aims/
activities.|
|Policy on social investment
including program related
investment|Para 1.38|Social investment is not part of FPOD’s charitable
aims/activities|
|Contribution made by
volunteers|Para 1.38|FPOD values the contribution made by volunteers,
who are essential to the charity’s operation. 78
volunteers gave c.2000 hours to FPOD. A breakdown
of the estimated hours is in the Annual Report. This
does not give economic value to their contribution,
but illustrates that FPOD could not provide projects
or activities without the input of volunteers.
FPOD volunteers include health and social care
professionals, scientists, academics, ethicists, and
people with medical conditions.|
|Other|||
## **Achievements and Performance**
||SORP reference||
|---|---|---|
|Summary of the main
achievements of the charity,
identifying the difference the
charity’s work has made to
the circumstances of its
beneficiaries and any wider
benefits to society as a
whole.|Para 1.20|• “Medically Unexplained Symptoms”: conference,
addressing the impact of MUS on healthcare
providers, and patients trying to navigate the
healthcare system.
• Patient Guide: make the most of your GP visit.
• “Forgotten Patients, Overlooked Diseases and Lost
Health Solutions”: educational webinar
• Presentations at the Institute of Medical Ethics
Annual Conference “Being Heard”
• established contact with bodies such as the
Community Engagement Task Force (CETF)
initiated by EURORDIS (European Organization
for Rare Diseases). CETF is a multi-stakeholder
group of scientists and clinicians.
• The Zebra Survey: issues around hyper-mobility
**Publications**:
• Noble B, Tookman A, Schmechel C, Stephens R,
Oesterling C, Jani K, Speck P, Diehl-Wiesenecker
E, Chrysostomou K, Walker S. The Challenge of
Diseases and Forgotten Patients. RCGP Life,
12thAugust 2022. http://bit.ly/3A8ryua (accessed
1st November 2022)
• Lifschitz, Carlos MD*; Walker, StevenMD†;
Tookman, Adrian MD‡. Awareness of Tissue
Disorders and Functional Gastrointestinal Diseases.
Journal of Pediatric Gastroenterology and Nutrition
77(6):p e115, December 2023. | DOI: 10.1097/
MPG.0000000000003947
• Goa, Ivy; Jani, Kiran; Patel, Chantal; Oesterling,
Christine; Tookman, Adrian; Walker, Steven.
Update on rare diseases and genetic testing. RCGP
Life (published 17thFebruary 2024) http://
tinyurl.com/3uzvzz6c
• Forrest, Christianne; Speck, Peter; Rajput-Ray,
Minha; Tookman, Adrian; Walker, Steven.
Medically unexplained symptoms: Four
perspectives. RCGP Life (published 4thMarch
2024) https://shorturl.at/zrXdh
• Tookman, A; Verma, J; Forrest, C; Chrysostomou,
K; Stephens, R; Walker, S. Rapid Response to
Richards T. BMJ Opinion: Not “all in the mind”.
BMJ 2024; 385:q1210. https://shorturl.at/6kcCk
**Abstracts/posters**
**S**amira Nur, James Coultas, Louise Jones, Christine
Oesterling, Adrian Tookman, Steven Walker, British
Journal of General Practice 2024; 74(suppl
1): bjgp24X738093. DOI: 10.3399/bjgp24X738093
Activities have elicited significant feedback,
demonstrating the impact of these pieces of work,
and expanded FPOD’s visibility to other groups who
are working in this area. It is hoped that this will lead
to FPOD being able to develop appropriate resources
in the future, for forgotten patients and people with
overlooked diseases.|
You may choose to include further statements where relevant about:
**Additional information (optional)**
||Achievements against
objectives set
Para 1.41
FPOD’s main objectives for the first 2 years of
operation are :
• to raise the visibility of FPOD among those whose
lives are affected by overlooked health issues, so
that they recognise FPOD as a reliable source of
support and signposting;
• to establish & maintain FPOD’s reputation among
healthcare professionals & providers, researchers,
industry, government bodies. This may be achieved
by delivering research encouraging the adoption of
research findings.
The response to events and publications indicates that
FPOD is meeting its objectives.
Performance of fundraising
activities against objectives
set
Para 1.41
No specific objectives were set, for fundraising
activities. The one-day conference on 1.5.24
produced some income from ticket sales, but the
primary intention was to ensure that as many people
as possible had access to the wide-ranging discussion
of topics on the programme.
Investment performance
against objectives
Para 1.41
Not applicable
Other|
|---|---|
## **Financial Review**
|Review of the charity’s
financial position at the end
of the period|Para 1.21|FPOD’s accounts have not been independently
examined, as income has been less than £25,000.
At the end of the reporting period, FPOD’s financial
situation was in deficit, due to expenditure on the
one-day conference which took place on 1.5.24. An
interest-free loan of £1500 was made to FPOD by St
Gilesmedical Ltd, to pay the deposit relating to the
conference. St Gilesmedical was subsequently
appointed to act as as an agent for FPOD, paying
other costs relating to the conference directly: those
costs totalled £3617. The total interest-free loan was
£5117, of which £525 has been repaid. The remaining
debt of £4592 will be repaid in instalments, over a
period of 36 months. £420.69 was retained in
FPOD’s current account., to meet any minor
expenditure.
Trustees are aware of concerns about a loan from a
trustee, and have taken steps to protect the charity:
• Confirmed FPOD’s Constitution permitted the
borrowing;
• Concluded that the loan was necessary, as the
conference would enable FPOD to carry out its
charitable purposes more effectively;
• Recognized the potential conflict of interest,
implicit in accepting a loan from another trustee,
and will abide by FPOD’s Conflict of Interest
policy and Risk Management policy;
• The loan totalling £5117 is documented, and will
be repaid in instalments. Repayment in full should
be completed within 36 months of 1.5.24;
• Trustee Dr Steven Walker, Scientific Director of St
Gilesmedical, will absent himself from discussion
relating to the debt, and has added the loan to his
Declaration of Interests. All trustees ensure that
their declaration is updated to reflect any changes
in their situation, which may affect FPOD.|
|---|---|---|
|Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|FPOD’s future reserves policy will reflect the
intention to hold reserves sufficient to allow
FPOD to continue operating for a minimum of 3
months, in the event of an unplanned closure, so
that essential services are maintained for
beneficiaries, until alternative support is located.|
|Amount of reserves held|Para 1.22|Nil|
|Reasons for holding zero
reserves|Para 1.22|FPOD has not secured sufficient income, to be able
to allocate any amount, for reserves. At present,
FPOD has no regular overheads, as the charity has
neither premises nor employees.|
|Details of fund materially in
deficit|Para 1.24|As detailed above, FPOD’s financial situation
was in deficit at the end of the reporting period,
with a debt of £4592 owed to St Gilesmedical.|
|Explanation of any
uncertainties about the
charity continuing as a going
concern|Para 1.23|Trustees do not believe that there is any
uncertainty about FPOD’s future as a going
concern.|
## **Additional information (optional)**
You may choose to include further statements where relevant about:
||The charity’s principal
sources of funds (including
any fundraising)
Para 1.47
Investment policy and
objectives including any
social investment policy
adopted
Para 1.46
FPOD does not have an investment or social
investment policy
A description of the principal
risks facing the charity
Para 1.46
The main risk facing FPOD is the difficulty of
securing income. This does not threaten FPOD’s
existence as such, as FPOD currently has no
regular overheads, but it could restrict
possibilities for growth and development. We
need to secure core funding, so that FPOD has
some operating stability.
Trustees are seeking someone to take a lead on
fundraising, as a member of the board of trustees
Other|
|---|---|
## **Structure, Governance and Management**
|Description of charity’s
trusts:||FPOD is an independent charity without a parent
body or subsidiary bodies, not part of any wider
group structure. FPOD is a CIO with voting
members other than its trustees. Membership is
open to anyone who is interested in furthering
FPOD’s purposes.
FPOD aims to develop resources for people with
medically unexplained symptoms, overlooked
health issues or common unresolved health
problems, by
• developing practical, accessible resources for
people trying to cope with the uncertainty of
overlooked health issues
• providing support/signposting for patients and
families who are not being helped elsewhere
• facilitating, sponsoring or delivering research
• promoting education
• encouraging the adoption of research findings.|
|---|---|---|
|Type of governing document
(trust deed, royal charter)|Para 1.25|FPOD’s governing document is a Constitution|
|How is the charity
constituted?
(e.g unincorporated
association, CIO)|Para 1.25|FPOD is constituted as a CIO.|
|Trustee selection methods
including details of any
constitutional provisions e.g.
election to post or name of
any person or body entitled
to appoint one or more
trustees|Para 1.25|FPOD welcomes expressions of interest, about
becoming a trustee. After initial discussion with
the Chair & trustees, 1) to ensure the applicant is
eligible to be a trustee, and not disqualified from
trusteeship, by any provisions in FPOD’s
Constitution, or the Charities Act 2011; 2) to
ensure that the applicant understands the
functions and duties of a charity trustee. To that
end, the applicant would be provided with
FPOD’s Constitution, FPOD Trustees Code of
Conduct, and the most recent Annual Report &
Accounts. That would enable the applicant to
make an informed decision, whether they want
to proceed.
At the AGM, members would be invited to vote
on the appointment as a trustee, of the applicant.
No external body or individual is entitled to
appoint any FPOD trustees.|
## **Additional information (optional)**
You may choose to include further statements where relevant about:
|Policies and procedures
adopted for the induction
and training of trustees|Para 1.51|• Trustees’ Code of Conduct
• Trustees’ Conflict of Interests Policy &
Procedure
• Finance Policy (including Trustee Expenses)
• Risk Management Policy|
|---|---|---|
|The charity’s organisational
structure and any wider
network with which the
charity works|Para 1.51|With no employees yet, FPOD trustees are gradually
assembling a structure that will allow the charity to
develop in the future, when finances permit.
FPOD works closely with the Forgotten Patients,
Overlooked Diseases Advisory Forum, a multi-
disciplinary group of health and social care
professionals, public health experts, academics,
scientists, ethicists, people with illness or medical
conditions, spiritual care-givers, politicians, and
campaigners with an international perspective. The
Forum meets remotely, once a month.
“Forgotten Patients, Ideas and Diseases Group” (as
the FPOD Advisory Forum was initially known) was
formed in early 2021, with 19 founding members: the
Group developed into an innovative international
network with 42 current members, whose strategy is
to explore example diseases, using a holistic, multi-
disciplinary approach, which could then be applied to
other conditions. Among health problems of current
interest to Forum members are Ehlers-Danlos
syndrome//hyper mobility spectrum disorders,
porphyria, fibromyalgia, and eosinophilic disease of
the gastrointestinal tract.
The FPOD Advisory Forum aims to make a
measurable difference to the lives of forgotten
patients, by drawing attention to overlooked diseases,
ideas & initiatives benefitting affected individuals.|
|---|---|---|
|Relationship with any related
parties|Para 1.51|St Gilesmedical Ltd - a science writing, health film,
medical education & research company: Scientific
Director Dr Steven Walker is a FPOD trustee. St
Gilesmedical provides some administrative support
for FPOD, on a voluntary basis.
St Gilesmedical has made an interest-free loan to
FPOD. The loan and its management is detailed in
the Financial Review section of this form.|
|Other|||
## **Reference and Administrative details**
|Charity name|Forgotten Patients, Overlooked Diseases|
|---|---|
|Other name the charity uses|None|
|Registered charity number|1202442|
|Charity’s principal address|c/o Suite 616
The Shepherds Building
Charecroft Way
London W14 0EE|
|||
## **Names of the charity trustees who manage the charity**
||**Trustee name**|**Office (if any)**|**Dates acted if not for**
**whole year**|**Name of person (or body)**
**entitled to appoint trustee**
**(if any)**|
|---|---|---|---|---|
|1
2
3
4
5|Adrian Tookman|Chair|Not applicable|Not applicable|
||Steven Walker|Secretary|Not applicable|Not applicable|
||Fiona Strathern
Lapraik||Not applicable|Not applicable|
||Richard Stevens||Not applicable|Not applicable|
||Jacques Tamin||Not applicable|Not applicable|
Corporate trustees – names of the directors at the date the report was approved
**Director name**
No corporate trustees
Name of trustees holding title to property belonging to the charity
|**Trustee name**|**Dates acted if not for whole year**||
|---|---|---|
|None|||
## **Funds held as custodian trustees on behalf of others**
|Description of the assets
held in this capacity|No funds held as custodian trustees on behalf of others|
|---|---|
|Name and objects of the
charity on whose behalf the
assets are held and how this
falls within the custodian
charity’s objects|Not applicable|
|Details of arrangements for
safe custody and
segregation of such assets
from the charity’s own assets|Not applicable|
## **Additional information (optional)**
**Names and addresses of advisers (Optional information)**
**Type of Name Address adviser**
**Name of chief executive or names of senior staff members (Optional information)**
## **Exemptions from disclosure**
Reason for non-disclosure of key personnel details
Not applicable
## **Other optional information**
## **Declarations**
**The trustees declare that they have approved the trustees’ report above.**
**Signed on behalf of the charity’s trustees**
**Signature(s) Full name(s)** Adrian Tookman **Position (eg** Chair **Secretary, Chair, etc)**
**Date** 17.02.2025
|**Forgotten Patients, Overlooked Diseases ** _(Registered Charity no. 1202442)_:Accounts for 22.3.23 -30.6.24|**Forgotten Patients, Overlooked Diseases ** _(Registered Charity no. 1202442)_:Accounts for 22.3.23 -30.6.24|**Forgotten Patients, Overlooked Diseases ** _(Registered Charity no. 1202442)_:Accounts for 22.3.23 -30.6.24|**Forgotten Patients, Overlooked Diseases ** _(Registered Charity no. 1202442)_:Accounts for 22.3.23 -30.6.24|**Forgotten Patients, Overlooked Diseases ** _(Registered Charity no. 1202442)_:Accounts for 22.3.23 -30.6.24|**Forgotten Patients, Overlooked Diseases ** _(Registered Charity no. 1202442)_:Accounts for 22.3.23 -30.6.24|**Forgotten Patients, Overlooked Diseases ** _(Registered Charity no. 1202442)_:Accounts for 22.3.23 -30.6.24|**Forgotten Patients, Overlooked Diseases ** _(Registered Charity no. 1202442)_:Accounts for 22.3.23 -30.6.24|||
|---|---|---|---|---|---|---|---|---|---|
|||||||||||
|**INCOME**|||**£**|||**LIABILITIES**||**£**|**£**|
||MembershipFees||140|||StGilesmedical Ltd|Loan|1500||
||Just GivingDonations||103||||Conference expenditure *|3617||
||Other Donations||600|||||||
||Conference Tickets||524||||Partial repayment of loan||525|
||Loan from StGilesmedical Ltd.||1500|||||||
|||||||**Total still owed to StGilesmedical Ltd**||**4592**||
|||**TOTAL**|**2867**|||||||
|||||||||||
|**EXPENDITURE**||||||||||
||Conference|||||||||
|||Deposit(paid 11.10.23)^^|1105|||||||
|||Artwork(paid 11.10.23)^^|300|||||||
|||Accommodation(guest speakers)*|340|||||||
|||Balance of Delegate Package *|1575|||**Notes**||||
|||Room Hire with Laptop*|260|||* Payments made directlybySt Gilesmedical Ltd.||||
|||CPD Approval *|78|||actingas agent appointed byForgotten Patients,||||
|||Sound Engineer *|535|||Overlooked Diseases||||
|||Printing*|351|||^^ Payments made byForgotten Patients,||||
|||Name Badges *|15|||Overlooked Diseases(from StGilesMedical loan)||||
|||Advertising*|300|||||||
|||Sundries *|27|||||||
|||Travel *|61|||||||
|||Banners *|75|||||||
|||Charitylaunch event|500|||||||
||Testpayment||3|||||||
|||||||||||
|||**TOTAL**|**5525**|||||||
1