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2021-03-31-accounts

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HBDCA

Annual Report and Financial Statements

Year ended 31[st] March 2021

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Contents

Page
Administrative details 3
Trustees’ Report 6
Independent Examiner’s Report 9
Statement of Financial Activities 10
Balance Sheet 11
Notes to the Financial Statements 12

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Administrative details

Administrative details
Charity name HBDCA
Other name the charity uses (Haemophilia and Bleeding Disorders Counselling
Association)
Registered charity number 1191416
Charity’s principal address Current address since 31 March 2021
5, St Andrews House
St Andrews Park
Soham, Ely
CB7 5GY
Previous address:
3, St Matthews Gardens
Cambridge
CB1 2PH

HBDCA Organisational Structure

Trustees

Nina Beer Governance and Fundraising Joseph Peaty Patient expert: Inhibitors and Infected Blood Jackie Brooks Finance and carers Ambassador - Ros Cooper Specialism: Women and Infected Blood

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HBDCA Team

Founder and Director

Christina Burgess Strategy and Infected Blood Lead

Senior Associates

Lisa Fowler

Deputy Director – Governance Lead

Marion MacGillivray Healthcare Professionals Lead

Angela Johnson Safeguarding Lead

Anila Babla

Communications and Complementary Therapies Lead

Clare Nield Joined HBDCA early 2021

Jon Stringer Adult Peer Mentor/Patient Advocate Joined HBDCA early 2021

Name of chief executive or names of senior staff members

Christina Burgess

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Names of the charity trustees who manage the charity

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20		 Trustee name Office (if any) Dates acted if not for whole
**year **		 Name of person (or body) entitled
to appoint trustee (ifany)
Nina Janine Beer Chair
Joseph Peaty
Jacqueline Brooks

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HBDCA Trustees’ Annual Report

For the period: 1 April 2020 to 31 March 2021

Charity name: HBDCA

(Haemophilia and Bleeding Disorders Counselling Association)

Charity registration number: 1191416

Objectives and Activities

Summary of the purposes of
the charity as set out in its
governing document		 To promote and protect the physical
and mental health of people in the UK
affected by a bleeding disorder, their
families and carers through:
A)The provision of counselling and
therapy;
B) Providing workshops, support and
signposting.
C) Raising awareness of the need for
support for people affected by a
bleeding disorder.
D) Providing workshops to
professionals to provide insight and
improve the support they provide to the
bleeding disorder community’.
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.		 The Royal London Hospital Haemophilia
Department
Despite the success of the 6-month pilot
which ended in December 2019, HBDCA
was not then able to return to the Royal
London Hospital Haemophilia Department
in early 2020, as had been anticipated, due
to the Covid-19 pandemic.
However, HBDCA maintained close
contact with the department throughout the
period April 1, 2020 – 31 March, 2021. Due
to the major impact of the Covid-19
pandemic, HBDCA offered staff, and
patients alike, crisis support should they
require it during this time.
The main activity carried out between
HBDCA and the RLH in January 2021 was
the commencement, at the Royal London’s
request, of negotiations for an anticipated

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return by HBDCA in April 2021 to provide psychological support to its patients on a long-term, permanent basis. This support will consist of one-to-one psychological counselling, quarterly, themed wellbeing workshops, and the facilitation of peer support groups for adults with a bleeding disorder and facilitation of a peer support group for parents of newly diagnosed children. A peer support group for women with bleeding disorders will also be facilitated by HBDCA. One patient at the RLH, who was identified by the RLH as being in urgent need of psychological support, has been provided with therapy by HBDCA since March, 2021, in anticipation of HBDCA’s imminent return. The Terrence Higgins Trust/Macfarlane Trust Counselling Service In early 2020, campaigners from the Infected Blood community recommended to the Terrence Higgins Trust/MacFarlane Trust, (THT), who were considering setting up a counselling service using monies assigned to the Terrence Higgins Trust from the closed-down MacFarlane Trust, that HBDCA should be involved in this new service. In April, 2020, HBDCA was invited by THT to advise on the setting up of processes and the creation of a robust client pathway. This work was duly completed and in early July, 2020, HBDCA became the only named psychological support charity on the THT list of approved therapists and psychological support organisations. N.B. THT clients are able to choose whichever therapist or organisation they might like to support them from this list or indeed can choose any therapist they prefer separate to this list. HBDCA commenced the provision of psychological support to THT clients at the end of July, 2020. HBDCA initially supported 2 clients with this number having increased to 8 clients by March, 2021. For these 8 clients, HBDCA carried out 120 psychological support sessions between July 25, 2020 and March, 31, 2021. EIBSS (England Infected Blood Support Scheme)

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From December 2020 – March 2021 HBDCA carried out 20 psychological therapy sessions for two clients. As well as providing psychological therapy, HBDCA was also required to write letters on behalf of each client to EIBSS in support of their therapy and why it was needed in order for the clients to be awarded funding by EIBSS. Needlephobia Workshop for Local Families with Bleeding Disorders (LFwBD) charity HBDCA realised, following a virtual meeting in early 2021 with the charity, LFwBD, of which Christina Burgess is a committee member and volunteer, that needle-phobia is a major issue for many parents and children, especially due to new treatment regimes which require subcutaneous injections of children. Funding for a needle-phobia workshop was therefore sought. The pharmaceutical company, Chugai UK/Roche, awarded an educational grant of £1500 to HBDCA on 26 March, 2021 to carry out a virtual needle-phobia workshop. The needlephobia workshop took place in May, 2021. An account of the needle-phobia workshop will be provided in the next year’s annual return and report (2021 – 2022). Infected Blood Inquiry and community Due to the pandemic, it was not possible to attend the Public Inquiry in person during April 2020 – March, 2021, but HBDCA continued to monitor closely the hearings and their outcomes in order to understand better the impact they might have on the Infected Blood community, some of whose members it supports psychologically. HBDCA has been exploring, since 2021, the possibility of having an MoU with two other charities which work with this community: The UK Haemophilia Society and the HepC Trust. These two organisations acknowledge the immense psychological impact the Infected Blood community has experienced (sustained over a 30-year period) and recognise the work HBDCA has been doing in

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psychological provision for this vulnerable cohort. Providing information for healthcare professionals Podcast: ‘Understanding the Psychological Impact of Bleeding Disorders on Women’ In February, 2021, two members of the HBDCA team, Christina Burgess (CB) and Lisa Fowler (LF), were invited to be guest speakers on a podcast produced by the Bleeding Disorders Academy (on behalf of pharmaceutical company, CSL Behring) and developed for UK healthcare professionals. The podcast was due for launch later in 2021. The aim of the podcast was to further educate healthcare professionals, in particular nurses, on this subject, and to provide them with additional insight, from a psychological perspective, on how women and girls with a bleeding disorder are impacted. CB and LF discussed specifically the psychological challenges women and girls can face and the positive impact psychological support can have on them. EAHAD Christina Burgess, who is Secretary of the European Association for Haemophilia and Allied Disorders (EAHAD) Psychosocial Working Group, produced and copresented a session at the Allied Health Professionals’ Day at the EAHAD Annual Congress in February, 2021. The subject was: ‘The Impact of Covid-19 on healthcare professionals and patients alike’ . The premise behind the presentation, which originated from a small study carried out in 2020 by Christina Burgess and her colleague, Petra Buckhova, from the Czech Republic, was to inform psychosocial professionals across Europe, as well as Haemophilia Centres, of important lessons learnt about the psychological impact on both cohorts during Covid-19. And, also, to explore how psychosocial provision might

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be improved and accessed more easily by
patients in any future pandemics. All
members of the HBDCA team attended this
virtual event.
An abstract entitled,‘The impact of Covid-
19 on healthcare professionals and
_patients’,_authored by Petra Buckhova and
Christina Burgess was published in the
academic journal, Haemophilia, in 2021.
Covid-19 psychological support for
patients and healthcare professionals in
a time of crisis
In 2020, as the Covid-19 pandemic began
to majorly impact on people’s lives, their
livelihoods and, especially, their mental
wellbeing, HBDCA decided in March 2020,
despite not having funding, that it would
offer crisis counselling to anyone who
might need it during the pandemic.
The HBDCA website was updated to
publicise the support being offered along
with signposting information to other useful
organisations and charities. HBDCA
notified the bleeding disorder community,
both individuals and organisations, such as
the UK Haemophilia Society, the Hepatitis
C Trust, the Infected Blood community and
the European Haemophilia Consortium
(EHC), of this support being offered.
HBDCA’s crisis support initiative still stands
and will continue to be available until the
pandemic is no longer a threat.
HBDCA website
HBDCA has, during this period, kept its
website up to date not only to promote
HBDCA but also to signpost people to
other useful links or organisations,
particularly during the pandemic. HBDCA
also commissioned some short films in
2020 to be produced for the website which
will provide a snapshot of the lives of some
of the bleeding disorder community and
also share some reflections on Covid-19.
They will be available in early 2022.
Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity		 The trustees of HBDCA adhere at all times
to the principles and guidance issued by
the Charity Commission on public benefit
and apply these to all activities carried out
by HBDCA.

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Commission on public benefit

Achievements and Performance

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.		 The Royal London Hospital Haemophilia
Department
To continue to develop a strong
relationship with the Royal London
Haemophilia Department and its patients
despite not being able to return to work
with them due to the Covid-19 pandemic.
And for the commencement in early 2021
of negotiations for a return aimed at April,
2021.This is, in itself, an achievement
during such a difficult period, with the RLH
actively requesting HBDCA’s return as
soon as it was in a position to do so,
having recognised the value of HBDCA’s
work in support of their patients during the
2019 pilot.
Quote from RLH regarding a patient being
supported by HBDCA since March 2021:
‘The patient was, in particular, very, very
grateful for your team's intervention and
ongoing support which happened at a very
challenging time for them. They could not
have spoken more highly of what they
called 'feeling privileged to receive such
excellent care'.
The Terrence Higgins Trust/Macfarlane
Trust Counselling Service
To be recommended by the Infected Blood
community to be a key contributor to this
new counselling service not only in
providing psychological support but in the
setting up of the service itself. The
psychological support provided by HBDCA,
since the inception of this new service in
July, 2020, will have enabled its
beneficiaries to avail themselves, some for
the first time in 30 years, of high-quality,
effective psychological support provided by
therapists at HBDCA with their deep insight
into bleeding disorders and into the
Infected Blood community. HBDCA
believes that its unique understanding of
this community has provided those it has

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supported with much-needed, longawaited, effective psychological support. Quote from a member of the Infected Blood community: ‘ HBDCA has helped my daughter tremendously with the counselling you have provided her. She is like a different person and everyone can see the change in her thanks to your help. She really was in a bad place before she started counselling and has gained both confidence and strength as well as being able to deal with her anxiety. So, as a father who always felt guilt (because of my HIV diagnosis and how it affected her), I will be eternally grateful for the help you gave, and this makes me feel better.’ EIBSS Since providing psychological provision through EIBSS, HBDCA has enabled clients access to insightful, high-quality support not previously available to them. Quote from an EIBSS client: ‘Clare was a great help and now I understand a lot of what I have been enduring over the years and can apply the techniques we discussed. Over the weeks we talked, I came to trust her completely; a very necessary component I believe. It was so marvellous to talk to someone who understood exactly what I, my son and my family, have gone through and which still haunts us all these years later. The service which you and your team offer is absolutely vital. I will never forget the understanding, empathy and encouragement shown by Christina and Clare. It’s important to know that I will be able to come to HBDCA for support should things ever become difficult again in the future. ‘ Education and Information Through effective communication, by developing relationships with like-minded organisations and healthcare colleagues, and, also, importantly, by listening to the community itself, HBDCA has been able, despite the immense strictures of the pandemic in 2020 - 2021, to reach out to, and inform, not only those infected and affected by a bleeding disorder but also the

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wider community, about the psychological impact and issues people with bleeding disorders and their family members experience. HBDCA has been able to share coping strategies and tools with those it supports and also with the wider community it works with, including healthcare professionals who might not have previously understood or had any great knowledge of the psychological impact a bleeding disorder can have on members of this unique community. Covid-19 psychological support for patients and healthcare professionals in a time of crisis HBDCA is proud to have played a small part during the Covid-19 pandemic by supporting clients, patients and healthcare professionals themselves on an ongoing basis by offering crisis support to anyone who might need it. In addition, through the EAHAD study carried out by Christina Burgess, HBDCA hopes to potentially inform how psychological support might be better provided and accessed by patients, through their Haemophilia Centres, for future pandemics. And, also, how psychosocial professionals forming an integral part of any Centre’s multidisciplinary team (MDT), as a part of holistic support, should become standard. Without fail, throughout the pandemic, HBDCA has held a weekly Zoom meeting with its therapy team, and regular Zoom meetings with the Trustees, the main purpose being to ensure members of HBDCA felt supported and less isolated. This has been an important part of the HBDCA culture which believes that supporting one’s team and colleagues ensures improved support for clients and patients. Charitable Incorporated Organisation HBDCA is very proud to have been awarded CIO status in September, 2020, and views this as a very important achievement.

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HBDCA Strategic Plan 2020 - 2021

HBDCA will provide effective, high-quality, tailored psychosocial support to patients, their family members and carers at The Royal London Hospital Haemophilia Centre

HBDCA will support members of the Infected Blood community across the United Kingdom

HBDCA will provide psychosocial support to one further London Centre and its patients, family members and carers

Achievements against
objectives set in Strategic
Plan 2020 - 2021		 HBDCA, during a challenging,
unprecedented year, caused by the Covid-
19 pandemic, was unable to fulfil properly
the first part of its strategic plan for 2020 –
2021. Nevertheless, it continued, with all
the means it had available, to develop the
relationship with the Royal London
throughout this period, to the extent that
HBDCA was then invited by the Royal
London Hospital Haemophilia Centre as
soon as it was in a position to do so, to ask
HBDCA to return to work with their patients
on a long-term, permanent basis to
commence in April, 2021.

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HBDCA supported members of the Infected
Blood community across the United
Kingdom very effectively through its work
with the THT/MacFarlane Trust counselling
service and through EIBSS. HBDCA has
also demonstrated support for this
community through actively engaging with
like-minded charities such as the UK
Haemophilia Society and the Hepatitis C
Trust, and by keeping up to date and
informed with all the outcomes of the
Inquiry.
Although HBDCA, during this period, did
not support a further London Haemophilia
Centre, it commenced conversations with
one further London centre, which are
ongoing, as well as commencing, and
nearly having concluded, negotiations with
a Haemophilia Department outside London.
Investment performance
against objectives		 All the objectives achieved during the
period 1 April 2020 – 31 March 2021,
despite a challenging financial climate due
to Covid-19, were carried out within the
monies received by HBDCA.

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Financial Review

Financial Review
Review of the charity’s
financial position at the end
of the period		 In brief, despite the most challenging period
in recent history, HBDCA ended the period
with £1897.69, fulfilling many activities
throughout the 12 months. The details of
the financial position and activity is
contained within the Financial Return for
HBDCA for April 1, 2020–31 March, 2021.
Statement explaining the
policy for holding reserves
stating why they are held		 It is HBDCA’s policy to hold reserves in
order to safeguard the long-term future and
sustainability of the CIO. The security
reserves offer will provide HBDCA with the
ability to maintain, continue to provide, and
also, to increase, the provision of
specialised, psychological support to the
bleeding disorder community.
Amount of reserves held Restricted = £1,150
Unrestricted = £748
Reasons for holding zero
reserves		 At the start of 2020, just as HBDCA was
due to resume its support of patients at the
Royal London Haemophilia Department,
the world was hit by the Covid-19
coronavirus pandemic. HBDCA’s return, out
of necessity, by the hospital, was put on
hold. Anticipated funding from this
particular source, therefore, did not
materialise. Despite this major reduction in
income due to the pandemic HBDCA has
nevertheless managed to remain solvent
with funds in the positive..
HBDCA aims, during the new financial
year, with an anticipated return date for
April, 2021 to the Royal London
Haemophilia Department, to hold 6 months’
reserves, and, ideally, 1 year’s reserves, in
the coming financial year.

Additional information

A description of the principal
risks facing the charity		 The principal risk for HBDCA would be
through lack of funding for the provision of
psychological care. Through keeping costs
and overheads to a minimum, by only
working with therapists of the highest
calibre and by HBDCA’s reputation
continuing to grow within the bleeding
disorder arena, HBDCA hopes to avoid this
risk.
A further risk would be for HBDCA not to
have enough members of the team to fulfil
the therapeutic requirements it is

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committed to provide but this year HBDCA
has increased its therapy team by one, as
well as also welcoming an adult peer
mentor. HBDCA will continue to increase
its team numbers but this is a process it
carries out with a cautious, measured
approach, as it wants to ensure that the
therapists engaged are of the right calibre
and will be as passionate, insightful and
committed as advocates for this community
as the current HBDCA therapy team are.
Covid-19 The Covid-19 pandemic has thrown a
vast spotlight on mental health!
HBDCA has, despite the numerous
challenges of the last year, including the
lack of anticipated funding, continued not
only to grow but to thrive, and, crucially, to
offer a safe, welcoming environment to all
those it has supported during the period of
this report. Often, not only counselling them
with regard to their bleeding disorder but, at
the same time, providing them with a
much-needed element of psychological
support during the pandemic.

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Structure, Governance and Management

Type of governing document
Constitution
How is the charity
constituted?		 Charitable Incorporated Organisation
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		 Election to post
The charity’s organisational
structure and any wider
network with which the
charity works		 HBDCA is led by three trustees: the Chair,
Nina Beer, along with Joseph Peaty and
Jacqueline Brooks. HBDCA also has an
ambassador, Ros Cooper.
The day to day running of the charity, and
its strategic direction, is led by its Founder
and Director, Christina Burgess, with
essential input from the trustees. Insight,
which is used to inform HBDCA’s work and
focus, is also contributed to by the five-fold
therapeutic team, the adult peer-mentor,
and by the bleeding disorder community
itself.
HBDCA works closely with the Haemophilia
Department at the Royal London Hospital
to provide psychological support to their
patients, including family members.
It also provides psychological support to
the Infected Blood community affected by
HIV or co-infected with HIV/Hepatitis C
through the Terrence Higgins Trust
counselling service and also to anyone
infected either with HIV, Hepatitis C or co-
infected with HIV/Hepatitis C through
EIBSS (England Infected Blood Support
Scheme).
Relationship with any
related parties		 HBDCA is now an approved provider of
psychological support for the Royal London
Haemophilia Department, the Terrence
Higgins Trust Counselling Service and
EIBSS. It collaborates with the charity,
Local Families with Bleeding Disorders,
The UK Haemophilia Society and with the
Hepatitis C Trust.

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Other
Future Plans		 HBDCA also has a burgeoning relationship
with Haemnet which carries out research
within the bleeding disorder community.
This relationship has enabled HBDCA to
provide valuable insight through the review
of academic papers on the psychological
impact of bleeding disorders. It has also
enabled HBDCA to learn from some of the
research carried out. For instance, on gene
therapy, and what might be some of the
psychological issues to be considered for
this new treatment which is currently being
trialled.
This collaborative approach will enable
HBDCA not only, potentially, to contribute
to improved quality of life for people across
the UK with a bleeding disorder but will also
enable the HBDCA team to continue to
learn, and, therefore, maintain, up-to-date
knowledge of the ever-changing, fast-
moving landscape of medical care this
community is currently experiencing. And
will enable HBDCA to be at the forefront of
psychological and psychosocial provision
for people with bleeding disorders.
HBDCA aims to consolidate and strengthen
its provision of psychological support at the
Royal London Hospital Haemophilia
Department.
It will replicate this model of psychological
provision in the coming year, with a further
Haemophilia Centre (outside London) with
whom it has nearly concluded contractual
matters.
HBDCA also anticipates carrying out a pilot
event for one further London Haemophilia
Centre in the coming year as a trial which
will potentially lead to further work with this
Centre in support of its patients.
HBDCA will continue to support the
Infected Blood community, particularly in
anticipation of the conclusion of the
Infected Blood Inquiry (expected later in
2022 or early in 2023) and the
psychological impact this may have on the
Infected Blood community.
HBDCA will continue to develop the
relationships it has with liked-minded
organisations, with the intention of

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collaborating on wellbeing events which will benefit the bleeding disorder community across the UK, as well as through the sharing of knowledge and expertise with these organisations and their members.

HBDCA will also continue to support its therapy team and trustees in the coming year through the provision of a training day and will also provide the therapy team with further learning opportunities, including access to specialised training provided by the Royal London Hospital.

Exemptions from disclosure

Reason for non-disclosure of key personnel details

N/A

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) Nina Janine Beer Position (e.g., Secretary, Chair Chair, etc) Date 28/01/2022

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Independent Examiner’s Report to the Trustees For the year ended 31 March 2021

I report to the Trustees on my examination of the accounts of the charitable company for the year ended 31 March 2021.

Responsibilities and basis of report

The charity Trustees, who are also Directors for the purposes of company law, are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 ('the 2006 Act').

Having satisfied myself that the accounts of the Company are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my

examination of your charity's accounts carried out under section 145 of the Charities Act 2011 ('the 2011 Act'). In carrying out my examination I have followed the Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act.

Independent examiners statement

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

  1. accounting records were not kept in respect of the Company as required by section 386 of the 2006 Act; or

  2. the accounts do not accord with those records; or

  3. the accounts do not comply with the requirements of section 396 of the 2006 Act other than any requirement that the accounts give a 'true and fair view' which is not a matter considered as part of an independent examination; or

  4. the accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102).

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report to enable a proper understanding of the accounts to be reached.

Approved on 28[th] January 2022

Haroon Ashfaq ACCA

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The charity was entitled to exemption from audit under s477 of the Companies Act 2006 relating to small entities.

The members have not required the charity to obtain an audit in accordance with section 476 of the Companies Act 2006.

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

These accounts have been prepared in accordance with the provisions applicable to companies subject to the small companies’ regime and in accordance with FRS102 SORP.

The accounts were approved by the Trustees on 28[th] January 2022 and signed on their behalf by: -

Nina Janine Beer

Chair

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Notes to the financial statements

1 Basis of preparation

These accounts have been prepared under the historical cost convention with items recognised at cost or transaction value unless otherwise stated in the relevant note to these accounts.

The accounts have been prepared in accordance with:

The Trustees consider that there are no material uncertainties related to events or conditions that cast significant doubt on the charity's ability to continue as a going concern.

The accounts have been prepared under the Charities SORP for the first time. Although the format of the accounts differs from that applied in the past, no changes have been made to amounts previously reported.

No material prior year error has been identified in the reporting period.

2 Accounting policies

Income

Income is included in the Statement of Financial Activities (SoFA) when the charity becomes entitled to the resources, it is more likely than not that the trustees will receive the resources and the monetary value can be measured with sufficient reliability. Performance related grants are recognised to the extent that the charity has provided the specified goods or services.

It is not practical to value the monetary value of donated time.

Expenditure and liabilities

Liabilities are recognised where it is more likely than not that there is a legal or constructive obligation committing the charity to pay out resources and the amount of the obligation can be measured with reasonable certainty.

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The charity has no employees and, therefore, no employee earning more than £30,000 per annum. Staff fees above consist of payments to freelancers.

None of the trustees have been paid any remuneration or received any other benefits from employment with this charity or a related entity.

No trustee expenses have been incurred.

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