OpenCharities

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

2022-03-31-accounts

1 | P a g e

HBDCA

Annual Report and Financial Statements

Year ended 31[st] March 2022

Charity Number: 1191416

1

2 | P a g e

Contents

Page
Administrative details 3
Trustees’ Report 7
Independent Examiner’s Report 26
Statement of Financial Activities 27
Balance Sheet 28
Notes to the Financial Statements 29

2

3 | P a g e

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 2022
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

Cynthia Creavalle

Finance

Jackie Brooks Carers

Ambassador - Ros Cooper Women and Infected Blood

4 | P a g e

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 Crisis and Women with Bleeding Disorders Lead Associate Anita Smith Psychotherapist Jon Stringer Adult Peer Mentor/Patient Advocate (on sabbatical this year due to family commitments)

5 | P a g e

Name of chief executive or names of senior staff members

Christina Burgess

Names of the charity trustees who manage the charity

1
2
3
4
5
6
7
8
9
10
11		 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
Cynthia Creavalle From Nov 2021
The charity’s organisational
structure and any wider
network with which the
charity works		 HBDCA is led by four trustees: the Chair,
Nina Beer, along with Joseph Peaty,
Jacqueline Brooks and Cynthia Creavalle
who was elected in November, 2021.
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 six-fold
psychotherapeutic team 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 (THT) and also to
anyone infected either with HIV, Hepatitis C
or co-infected with HIV/Hepatitis C through
the England Infected Blood Support
Scheme (EIBSS).

5

6 | P a g e

Relationship with any
related parties		 HBDCA is an approved provider of
psychological support for the Royal London
Haemophilia Department, the Terrence
Higgins Trust Counselling Service and the
England Infected Blood Support Scheme
(EIBSS). It collaborates with The UK
Haemophilia Society and with the HepC
Trust.
Other HBDCA has had an increased involvement
with Haemnet this year which carries out
research within the bleeding disorder
community. As well as HBDCA being
involved in providing insight through the
review of academic papers on behalf of
Haemnet on the psychological impact of
bleeding disorders, HBDCA has also
continued to learn from some of the
research carried out by Haemnet. For
instance, on the many issues and impacts
experienced by women with bleeding
disorders and research projects involving
the rare bleeding disorders community.
In addition to the above, Haemnet and
HBDCA expect to collaborate in three
areas of work in the coming year: gene
therapy, women with bleeding disorders
and rare bleeding disorders.
This collaborative approach continues to
enable HBDCA not only to contribute to
improved quality of life for people with a
bleeding disorder but also to enable the
HBDCA team to continue to learn, and,
therefore, maintain, up-to-date knowledge
and insight into the ever changing, fast-
moving landscape of medical care and
provision this community is currently
experiencing.
These new landscapes all require
psychosocial provision to create a sense of
stability for the bleeding disorder
community in these changing
environments.

6

7 | P a g e

HBDCA Trustees’ Annual Report

For the period: 1 April 2021 to 31 March 2022

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 (RLH)
From 1 April, 2021, HBDCA continued to
negotiate with the Royal London with
regard to its formal return to the
Haemophilia Department. The final
negotiations and contract were eventually
signed in August, 2021, with HBDCA
commencing psychological support to RLH
patients from 1 September. The contract
was for 1 year with the strong expectation
that this contract will be renewed in 2023
for a longer-term, possibly 3 – 5 year
contract. A longer-term contract had been
anticipated to commence in 2022 but, due
to the RLH team member responsible for
these negotiations being absent for a long
period of time, in order to ensure continuity,
the one-year contract was agreed to, due
to time constraints, but with the tacit

7

8 | P a g e

agreement that the contract from 2023 onwards will be a long-term one. From 1 September, 2021 to 31 March, 2022, the support provided by HBDCA consisted of one-to-one psychological counselling, quarterly, themed wellbeing workshops, and the facilitation of peer support groups for male adults with a bleeding disorder and facilitation of a peer support group for women with bleeding disorders. Pre-assessment of patients and their being assigned to psychotherapists did not commence until November/December 2021 to ensure all HBDCA psychotherapy team members and the HBDCA Director had completed mandatory RLH training prior to this. 25 patients were then initially referred by the multidisciplinary team (MDT) at the RLH. 6 out of this group felt they did not require psychological support at this stage but were interested in peer support and wellbeing workshops. These patients were made aware that they can reach out for support to HBDCA at any time. 19 pre-assessment sessions were carried out with patients then receiving one-to-one psychotherapeutic support during this period. 60 psychotherapy sessions were carried out for these patients January – March, 2022. 2 additional patients were assessed and then identified by HBDCA as requiring more in-depth psychiatric care. A Newly Diagnosed Families Wellbeing Workshop was held 26 March, 2022. Three further workshops were scheduled to be held in the coming year on the following themes: • Women with Bleeding Disorders • Empowerment and Pain Management • Gene Therapy.

8

9 | P a g e

Some themes identified during psychotherapy sessions: Loss, and adjustments to a new sense of self and identity Patient empowerment, more specifically having a deeper understanding of their bleeding disorder and treatment plans Importance of patient autonomy Death anxiety - Having a chronic condition in the family tends to increase fears related to dying so counselling can help with proportionality regards anxiety around dying Limiting beliefs - Clearly having a physical disability may limit some activities however it has been noticed that it may be accompanied by limiting beliefs on potential overall. Counselling can help distinguish which limits the health challenge presents and which are selfimposed Learned helplessness/entitlement - When dependent on public health services and/or financial support in part it can lead to a phenomenon of helplessness and even entitlement. Counselling can help clients to feel empowered so that they can get their needs met and apply for support without feeling victimised by circumstance Permission - One particular piece of work centred on a patient giving themself permission to have autonomy through understanding that they too are the expert, the expert on themself. This led to a more collaborative feeling and a decrease in anxiety Feelings of disconnectedness since Covid hit Patients speak more about current personal issues, family dynamics than their disorder Patients have expressed that it is very helpful knowing that we, as HBDCA, have knowledge/understanding of haemophilia and that they can explore these feelings/anxieties

9

10 | P a g e

It is helpful to have somewhere to say exactly how they feel as they do not want to share/burden others with these thoughts. The Kent and Canterbury Hospital Haemophilia Department (K&C) In September, 2021, HBDCA commenced contractual talks with the K&C with a view to HBDCA providing a similar level of psychological support to its patients to that provided to the Royal London. It was agreed that a one-year pilot should ensue. Due to governance requirements, this pilot, which was initially anticipated to commence in late Autumn, 2021, will now commence in the new financial year at the end of April, 2022. In anticipation of HBDCA’s commencement at the K&C, HBDCA provided psychotherapeutic support in late 2021 and early 2022 to three patients from the K&C who had been identified as being in urgent need of psychological support. St George’s Hospital Haemophilia Department Despite not having a formal agreement with the haemophilia department at St George’s, Tooting, HBDCA was requested by members of the multidisciplinary team (MDT) there to carry out psychotherapeutic crisis support (6 sessions) for one patient as well as a single ‘listening ear’ session for another patient. HBDCA also provided a letter for one of the patients it had assessed in order for them to apply for funding from the England Infected Blood Support Scheme (EIBSS). It is hoped that this adhoc support for St George’s will become more formalised in the near future should adequate funding become available. University Hospital Southampton Haemophilia Department (UHS) HBDCA was invited to meet in person on 24 March, 2022, with the senior team at the UHS Haemophilia Department. They were exploring the possibility of HBDCA providing psychological provision to their patients, again along the lines of that provided to the Royal London. This

10

11 | P a g e

conversation is currently ongoing whilst funding is secured and put in place. The Terrence Higgins Trust/Macfarlane Trust Counselling Service (THT) Having commenced support to the Infected Blood community in July, 2020, HBDCA remains the only named psychological support charity on the THT list of approved therapists and psychological support organisations. As stated previously, it is very important to note that 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. The client list for this vulnerable cohort continued to grow during 2021 – 2022 with HBDCA supporting 11 people. 203 one-toone psychotherapeutic sessions have been provided to date for THT clients. England Infected Blood Support Scheme (EIBSS) From April 2021 to March 2022 HBDCA carried out 30 psychotherapeutic sessions for three clients, as well as completing a pre-assessment session for each one. In addition to providing this psychotherapeutic support, HBDCA was also required to write letters on behalf of each client to EIBSS in support of their therapy to justify why it was needed in order for these clients to be awarded funding by EIBSS. Originally, it was not certain if the EIBSS funding of £900 per client was a one-off award, but it has been confirmed that clients may re-apply should further support be required, on an annual basis. The change during this period has been in the fact that EIBSS clients are now beginning to apply for this further funding which will see an increase in HBDCA’s work with this client-base during the coming year. N.B. It is important, for the recording of HBDCA’s work and output during this period, to note that each client, whether from the Haemophilia Centres, from THT or

11

12 | P a g e

from EIBSS, are each called and spoken with at length on at least one occasion, frequently two or three times, by the Director, as part of the HBDCA process. These calls are used to introduce HBDCA to the client and its work, to explain to them the psychotherapeutic journey in order to put them at ease if they are nervous. And for HBDCA to learn a little about the client and their issues to ensure that HBDCA does not lose sight of the community it serves. Several hundred calls have been carried out to patients/clients by the Director in 2021 - 2022. Needlephobia Workshop for Local Families with Bleeding Disorders (LFwBD) charity As mentioned in the previous Trustees’ Report, the pharmaceutical company, Chugai/Roche, awarded an educational grant of £1500 to HBDCA on 26 March, 2021 to carry out a virtual needle-phobia workshop for families from LFwBD. It took place on 29 May, 2021. The needle-phobia workshop which had elicited interest from additional haemophilia departments such as at Leeds, provided valuable insight and coping strategies and tools to the participants. A morning session was held for parents and an afternoon session held for children. Our art psychotherapist, Anila Babla, worked with the children to create ‘superpower’ masks for them to wear and be used as a psychological tool to help them overcome fear of needles. We also had a young person speak to the children about his own experiences with needles in order to reassure them. 100% of those who attended stated that the workshop was helpful and insightful. HBDCA, funding permitting, aims to hold further needlephobia workshops in the future. Infected Blood Inquiry and community HBDCA Director, Christina Burgess, attended several Inquiry evidence days in person. These days were not only essential in helping HBDCA to gain further insight into the trauma and issues experienced by the Infected Blood cohort, but also enabled Christina Burgess to meet with a broad section of the Infected Blood community and with counterparts at other

12

13 | P a g e

organisations such as The UK Haemophilia Society and the HepC Trust. An important piece of work was carried out by HBDCA during this period. It saw HBDCA supplying to Sir Robert Francis QC (now KC) and his team, a written submission to help inform their draft study on the Compensation Framework. HBDCA’s submission outlined why psychological support should be provided as standard to anyone in the Infected Blood community, infected or affected, should they require it, as part of the final compensation package to be offered postInquiry. (The Infected Blood Inquiry is anticipated to conclude in 2023). HBDCA was notified, on receipt of its submission, that Sir Robert Francis’s team were very grateful for the content of HBDCA’s report and would use this valuable insight not only to inform the study and its outcomes, but also to inform their wider work around the Inquiry itself. Providing information for healthcare professionals Christina Burgess, Director of HBDCA, was approached in early 2022, further to the original CSL Behring BDA (Bleeding Disorders Academy) podcast held in the previous year aimed at nurses, to be the lead in a CSL Behring funded project, which will explore, at a roundtable, the inequality of healthcare provision for women and girls with bleeding disorders. This project will be aimed at healthcare professionals and used to highlight to politicians and government health departments the inequality experienced, for instance, around late diagnosis of girls and women. Having worked on the initial concept in early 2022, the roundtable has been delayed but is anticipated to be held in the coming year. European Association for Haemophilia and Allied Disorders (EAHAD) In February, 2022, Christina Burgess was elected Vice-Chair of the European Association for Haemophilia and Allied Disorders (EAHAD) Psychosocial Committee. (The original working group of which Christina was secretary had been

13

14 | P a g e

promoted to committee status at that point due to the efficacy of their work in improving access to psychosocial support across Europe being recognised by the EAHAD Executive Committee). Christina Burgess chaired sessions at the Allied Health Professionals’ Day Psychosocial Conference at the EAHAD Annual Congress in February, 2022. The theme was: ‘Transitions’, covering transition for young people changing from paediatric to adult care, transition for patients to new treatments (i.e. gene therapy), and transition for psychosocial professionals to new measurement tools. European Haemophilia Consortium (EHC) Christina Burgess continued during 2021 – 2022 in her capacity as a long-standing member of the EHC Inhibitor Working Group, facilitating peer support groups on the EHC’s behalf, for the partners of people with an inhibitor. She was also a key facilitator at the annual Inhibitor Summit in December, 2021 (virtual). As an added means of keeping the HBDCA team updated and informed, particularly around new treatments and on multidisciplinary advances, Christina Burgess has shared with the HBDCA team outcomes and information on many aspects of work carried out by the EHC, including from webinars and roundtables, which has benefitted the team, helping to further develop their insight and expertise. This knowledge has also been shared with the wider community, for instance, during HBDCA wellbeing workshops. 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. HBDCA is currently in the process of adding further content to its website to reflect the different cohorts it works with and areas of work it carries out, such as Women with Bleeding Disorders, Newly Diagnosed, complementary therapies (i.e. Music Therapy and Art Psychotherapy), plus a My

14

15 | P a g e

Stories section with insightful articles with a
psychosocial focus from siblings, other
family members, the Infected Blood
community and from the bleeding disorder
community as a whole.
The HBDCA website, which is an extension
of the team and the work being carried out,
is a useful resource for the community.
HBDCA Governance and Team Support
Since early 2022 HBDCA has been
providing its psychotherapeutic team with a
monthly supervision session. This is
especially important due to the work they
carry out supporting people enduring deep
trauma in the Infected Blood community.
HBDCA recognised that working in
psychotherapeutic provision can be very
impactful to the therapists themselves.
Providing supervision is good practice and
helps also to ensure that the team feels
valued and supported in the essential work
they carry out.
HBDCA has also set up a monthly
Leadership meeting between the Director
and the Senior Associate
psychotherapeutic team, with a remit to
continually improve, update, and add to,
HBDCA’s governance documents and
policies. These meetings are ongoing.
HBDCA Volunteer Project In March, 2022, HBDCA commenced a
volunteer project with the Haemophilia and
Bleeding Disorders community in
Kyrgyzstan. It had been realised that there
was no psychological support available at
all to this vulnerable community. HBDCA
ran a wellbeing workshop to launch this
initiative. As an outcome of the workshop it
is anticipated that HBDCA will facilitate
peer support groups for three different
groups: Single Mums, Parents of Newly
Diagnosed Children and Young Adult Men
with Haemophilia, on a voluntary basis, in
the coming year, which will be reported on
in the next Trustees’Report, 2022–2023.
Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit		 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.

15

16 | P a g e

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
Despite the delay in HBDCA’s formal return
to the Royal London Haemophilia
Department, which had been anticipated
for 1 April 2021, with the commencement
actually being 1 September, 2021, the work
carried out there since then has seen the
patient numbers grow and the relationship
with the multidisciplinary team develop very
positively.
At the start of the new contract, Christina
Burgess was encouraged to apply for an
NHS Smart Card, which she was
successful in being awarded, which
enables her to access the RLH system in-
house and also remotely, so that she can
view patient records and input into them.
Separately to this, the entire HBDCA team
were required to complete a
comprehensive series of training modules,
prior to commencement of
psychotherapeutic support for patients. All
modules were carried out successfully and
were useful learning tools for the HBDCA
team.
The Newly Diagnosed Families Wellbeing
Workshop was well-attended and
successful, with several more being
planned. Two peer support groups: Adults
with a Bleeding Disorder, and Women with
Bleeding Disorders commenced in March,
2022. These are being held on a monthly
basis. The long-term benefits of these peer
support groups will be reported in the next
Trustees’ Report, 2022 – 2023.
Comment from a senior member of the
MDT at the RLH:
‘Please pass on my heart-felt thanks to all
the HBDCA team. I know how valuable
you all are to our patient cohort from the
first-hand feedback I have heard from
many who have used your service. The
service was longoverdue at The Royal

16

17 | P a g e

London and I am sure it will continue to be a foundation of care going forward.’ Additionally, HBDCA has been a key contributor to ongoing discussions with the Royal London MDT which will hopefully improve how psychological support is provided, and at what stages, to women and girls considering motherhood, going through pregnancy and also during the post-natal period. . The Terrence Higgins Trust/Macfarlane Trust Counselling Service (THT) This year, as previously, there have been individuals and their family members who have availed themselves of psychotherapeutic support, in some cases for the first time in 30 years. This provision of high-quality, effective psychotherapeutic support is being made available through the HBDCA team, with its deep insight into bleeding disorders and into the Infected Blood community. HBDCA believes that this unique insight, which it prides itself on being its USP, is essential in providing much-needed, long-awaited, effective psychotherapeutic support to this vulnerable group. England Infected Blood Support Scheme (EIBSS) Since commencing psychological provision through EIBSS, during the period 2021 - 2022 HBDCA has enabled further clients to access insightful, high-quality support not previously available to them. The EIBSS provision is particularly important for the Hepatitis C cohort who are not eligible for provision of counselling through the Terrence Higgins Trust/MacFarlane Trust route. Below is a quote from one of the clients HBDCA supports in the Infected Blood community: ‘I cannot recommend HBDCA highly enough. They are all so warm and understanding. I have been having therapy sessions for a while now and it is like talking to a friend. I am a very anxious person and I was very scared to start my counselling journey but Christina and Lisa

17

18 | P a g e

have made me feel completely at ease and
I am able to discuss anything with them,
without judgment. Thank you both so much
for everything.’
Education and Information
Through effective communication and by
developing relationships with like-minded
healthcare colleagues and organisations
such as Haemnet, Haemosexual, The UK
Haemophilia Society, the HepC Trust and
the charity, Local Families with Bleeding
Disorders, along with listening to the
community itself, HBDCA has been able to
reach out to, and inform, not only those
infected and affected by a bleeding
disorder but also the wider community,
about the psychological issues people with
bleeding disorders and their family
members experience.
HBDCA has also been able to share this
psychotherapeutic knowledge and insight
with healthcare professionals and other
organisations including some
pharmaceutical companies who provide
treatment, who might not have previously
understood or had any great knowledge of
this unique community’s psychological
issues.
Continuing impact of Covid-
19		 Covid-19 psychological impact on
healthcare professionals and patients
The small EAHAD study on_‘the impact of_
Covid-19 on healthcare professionals and
_patients’_carried out by Christina Burgess
in 2020, has been used in 2021 – 2022 to
inform the content of a Letter to the Editor
from the EAHAD Psychosocial Committee,
for the academic journal,_Haemophilia._The
Letter is currently being reviewed for
publication.
Commenced at the start of the Covid-19
pandemic, HBDCA continues to hold a
weekly Zoom meeting with its therapy
team, and regular Zoom meetings with the
Trustees. This is an important part of the
HBDCA culture which believes that
supporting one’s team and colleagues
ensures improved support for clients and
patients.
Despite the pandemic being effectively
over there are impacts still being

18

19 | P a g e

experienced even in practical terms such as Haemophilia Departments preferring that psychotherapeutic support be provided virtually rather than in person. This virtual provision has been proven to be entirely effective but HBDCA is working towards a return to in-person wellbeing workshops in the coming year. HBDCA has also reflected and learnt from a further impact of the pandemic which is that many people were experiencing ‘Zoom’ fatigue. Now that the world is beginning to function in a pre-pandemic way once more, HBDCA will address this ‘virtual’ fatigue by holding more in-person psychotherapeutic support meetings and events in the coming year, 2022 – 2023.

HBDCA Strategic Plan 2021 - 2022

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 the second London Centre and its patients, family members and carers

HBDCA will expand its reach to a further hub in another region of the United Kingdom

Achievements against
objectives set in Strategic
Plan 2020 - 2021		 HBDCA has now fully returned to
supporting the Royal London Hospital
Haemophilia Department.
Although not formally yet present at another
London Haemophilia Centre, it has carried
out work for St George’s Haemophilia
Department, in Tooting, south London, with
the hope that this workstream will increase
in the near future.
HBDCA continues to support the Infected
Blood community across the United
Kingdom very effectively through its work
with the Terrence Higgins
Trust/MacFarlane Trust counselling service
and through the England Infected Blood
Support Scheme (EIBSS). HBDCA has also
demonstrated support for this community

19

20 | P a g e

through actively engaging with like-minded
charities such as the UK Haemophilia
Society and the HepC Trust.
It has also kept up to date with all the
outcomes of the Inquiry, attending many
evidence days in person. HBDCA
submitted essential insight and evidence
which was used to inform the Infected
Blood Compensation Framework. N.B. The
initial draft of the framework study has
stated that it recognises the need for
psychological support (point 17 in its
recommendations).
HBDCA, during this period, commenced
contractual negotiations with the Kent and
Canterbury Hospital Haemophilia
Department with its imminent presence
expected in the new financial year, April,
2022, achieving a further key objective of
the 2021–2022 Strategic Plan.
Investment performance
against objectives		 All the objectives achieved during the
period 1 April 2021 – 31 March 2022, were
carried out within the monies received by
HBDCA.

20

21 | P a g e

Financial Review

Financial Review
Review of the charity’s
financial position at the end
of the period		 HBDCA commenced the period with
£1897.69 in its account and ended the
period with £741.99 in its account. This
reduced amount was caused by a delay in
payment of fees due to HBDCA in February
and March, 2022 with a further amount of
£5,832 anticipated to be received before
the year end. In the event, these additional
monies arrived into the HBDCA account on
11 April, 2022, and will be included in next
year’s Trustees Report and the
accompanying Financial Return. Had these
monies arrived on time the balance would
have been: £6,574.00. Please note: a new
system has been agreed with the payor to
ensure a similar delay in paying HBDCA
will not occur in the future.
Throughout the year HBDCA fulfilled many
activities. The details of the financial
position and activity is contained within the
Financial Return for HBDCA for April 1,
2021–31 March, 2022.
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. And with the
security reserves offer, for HBDCA to have
the ability to maintain, continue to provide,
and also to increase this provision, the
specialised psychological support it offers
the bleeding disorder community.
Amount of reserves held None.
Reasons for holding zero
reserves		 As explained above.
In addition to the receipt of the two delayed
payments, HBDCA was also delayed by
five months in its return to the Royal
London Haemophilia Department and also
in its commencement of the Kent and
Canterbury one year pilot. This reduced
anticipated funding from these two major
sources. However, HBDCA has
nevertheless managed to remain solvent
with funds in the positive whilst increasing
the services it provides to a greater number
of people.
N.B. HBDCA has carried out a financial
forecast showing that it should be in a
position to hold two months’ reserves in the
coming financial year, 2022 – 2023, and
potentially up to one year’s reserves, in the
following financial year, 2023-2024.

21

22 | P a g e

Additional information

A description of the principal
risks facing the charity		 The principal risk for HBDCA would be lack
of, or loss 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
committed to provide. We have increased
the psychotherapeutic team by one and will
address this issue further in 2023.
In conclusion HBDCA has, despite issues such as the
delayed return to the Royal London
Hospital Haemophilia Department and the
delayed commencement of services at the
Kent and Canterbury Haemophilia
Department, continued to grow and to
thrive.
As well as client/patient numbers
increasing this year, in all areas of HBDCA
activity, HBDCA has also increased its
team numbers and put in place new
strands of support for the team itself as well
as ensuring HBDCA governance
documents and policies are fit for purpose.
HBDCA has benefitted from the election of
a new trustee in November, 2021, Cynthia
Creavalle, with her particular expertise in
financial management as well as her
experience in already having worked in the
bleeding disorder community. HBDCA is
also soon to engage a new book-keeper.
HBDCA has continued to offer a safe,
welcoming environment to all those it has
supported during the period of this report,
providing a high level of expertise from an
experienced, passionate and empathetic
team.

22

23 | P a g e

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 four trustees: the Chair,
Nina Beer, along with Joseph Peaty,
Jacqueline Brooks and Cynthia Creavalle.
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 six-fold
therapeutic team 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 the
England Infected Blood Support Scheme
(EIBSS).
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.

23

24 | P a g e

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
collaborating on wellbeing events which will

24

25 | P a g e

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) Joseph Paul Peaty Position (e.g., Secretary, Trustee Chair, etc) Date 30/01/2023

25

26 | P a g e

Independent Examiner’s Report to the Trustees For the year ended 31 March 2022

I report to the Trustees on my examination of the accounts of the charitable company for the year ended 31 March 2022.

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 30[th] January 2023

Haroon Ashfaq ACCA

26

271 Page Stit•m•nt of Flninclll Artfvhl•i Ilndudlni iummiry ol Incorn• Ind Exp•ndltur• Account) Y••r •nd•d 31 Mir¢h 2022 Nae Urrestrtrd ReStrx￿d 2022 Totsl Fundi Uwe5trKied Re5tricied 2fy21 Totsl Fundi Kthne ¥J Ch&it1￿ AthMie5 JDt5 & DcutioT 51737 23J4 1.5 29,078 13519 615 29.078 13,519 615 21,193 Zl.545 1,452 Isi 43212 796 13325 13,525 1150 I￿1& Totsl fu[wIs￿￿f￿3rd 1,898 Totsl fdgc*ried forn¥d 14273 15AZ3 1,89B 27

28 | P a g e

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 2023 and signed on their behalf by: -

Joseph Paul Peaty

Trustee

28

29 | P a g e

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.

29

30 | P a g e

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.

30