**1 |** P a g e ## **HBDCA** Annual Report and Financial Statements Year ended 31[st] March 2023 Charity Number: 1191416 1 **2 |** P a g e ## Contents ||Page| |---|---| |Administrative details|3| |Trustees’ Report|7| |Independent Examiner’s Report|28| |Statement of Financial Activities|29| |Balance Sheet|30| |Notes to the Financial Statements|31| 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 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 **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 ## **Alicia Fowkes** Psychotherapist – joined January 2023 **Patrick Browne** Associate Music Therapist **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
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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 Paul Peaty|||| ||Jacqueline Brooks|||| ||Cynthia Creavalle|||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| ## **Exemptions from disclosure** Reason for non-disclosure of key personnel details **N/A** |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
Departments at the Royal London Hospital and
Kent and Canterbury Hospital to provide| |---|---| 5 **6 |** P a g e ||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).| |---|---| |Relationship with any
related parties|HBDCA is an approved provider of
psychological support for the Royal London
Haemophilia Department, Kent and Canterbury,
the Terrence Higgins Trust Counselling Service
and the England Infected Blood Support
Scheme (EIBSS). It collaborates with The UK
Haemophilia Society, Haemosexual, the HPA,
Haemnet, the Hepatitis C Trust and the Kyrgyz
NMO.| |Other|HBDCA has had an increased involvement with
Haemnet this year which carries out research
within the bleeding disorder community.
HBDCA invited Haemnet to be a key contributor
to the Principles in Gene Therapy roundtable.
HBDCA and Haemnet have had a Non-
disclosure Agreement in place since July, 2022.
The Haemophilia Society and HBDCA are in the
process of formulating a Memorandum of
Understanding between the two organisations
with the certainty that there will be greater
collaboration in the coming years especially
around Infected Blood, Rare Disorders and
Gene Therapy.
Having such a 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. Also, it is hugely important that
HBDCA continues to provide high quality
psychotherapy, along with peer support from a
trusted source, to the Infected Blood community
during such challenging times for them ahead –
especially in the next few years.| 6 **7 |** P a g e ## **HBDCA Trustees’ Annual Report** **For the period: 1 April 2022 to 31 March 2023** **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)**
Throughout this period, HBDCA continued to support
patients and family members at the Royal London Hospital
Haemophilia Department (RLH) with the strong expectation
that the new contract (which will be renewed in August,
2023), will be for a longer-term, 5 year period and will
almost certainly include funding for a part-time child
psychologist for which a business case was provided to
support this in early 2023.
The support provided by HBDCA consisted of one-to-one
psychological counselling, quarterly, themed wellbeing
workshops, and the facilitation of a monthly peer support
group for male adults with a bleeding disorder and
facilitation of a monthly peer support group for women with
bleeding disorders. 4 women with rare bleeding disorders
from the RLH have also participated throughout this year in
the monthly Rare Peer Support Group which HBDCA runs
on a voluntary basis. There are now 10 members of this
group from across the UK.
HBDCA has been supporting 25 patients during this period,
including 6 new patients, who had all been referred by the
multidisciplinary team (MDT) at the RLH. Approximately 50| 7 **8 |** P a g e contact calls were made during this period, 6 preassessment sessions carried out and 250 psychotherapy one-to-one sessions completed. The number of patients currently being supported equates to more than 50% of those patients originally referred to HBDCA by the RLH. In addition, 4 patients have successfully concluded their psychotherapy. Any of the patients who had been referred but felt they did not require psychological support at this stage were also made aware that they could reach out for support to HBDCA at any time. They were also notified about peer support groups they might join and wellbeing workshops they might attend. A (virtual) Empowerment and Pain Management Wellbeing Workshop was held on 13 November, 2022. This workshop was well received and will be held in person next year. Three further workshops were scheduled to be held this year on the following themes: • Newly Diagnosed Families • Women with Bleeding Disorders • Gene Therapy. The Gene Therapy Wellbeing event has been delayed until the Haemophilia Department feels it is the right time in order for them to commence this new therapy first. It is anticipated the wellbeing workshop will now take place in early/mid 2024. HBDCA intends to run all its wellbeing workshops in person at the Royal London from 2023 – 2024 and beyond. This has not been possible this year whilst the Haemophilia Centre has still continued to restrict visits to the Centre in person post the Covid-19 pandemic. HBDCA has also commenced valuable conversations with the RLH to develop collaborations between the Haemophilia Department and the Obstetrics/Gynaecology Departments at the Royal London in order that HBDCA can support, psychologically, when needed, young women with bleeding disorders who might be considering pregnancy, are pregnant, have experienced fertility issues, or are now post-natal. **Continuing and new themes identified during psychotherapy sessions:** • Impact on women who have experienced issues when contemplating starting a family, whether this be infertility, miscarriage or judgement from relatives and family members. 8 **9 |** P a g e • A heightened sense of isolation for women in the rare cohort is a common experience. Another common story is of difficulty getting diagnosed. • Invisible – patients can sometimes feel that they are invisible or not listened to. Sometimes this is a symptom of their psychological state with this sense of invisibility reducing as they acknowledge and appreciate that they are finally being heard. • Loss and adjustments to a new sense of self and identity - due possibly to a patient accessing novel therapies and having to reassess their lives and sense of self. • 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. • Limiting beliefs - Clearly having a physical disability may limit some activities however it has been noticed that it may be accompanied by limiting beliefs in one’s own potential 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. • Patients often speak more about current personal issues, family dynamics than their disorder. • It is helpful to have somewhere to say exactly how they feel as they do not want to share/burden others with these thoughts. Quote from an RLH patient being supported by HBDCA: _‘I am having counselling from HBDCA. If it wasn't for this counselling I would be in a very bad way. Especially as a medical procedure I was due to have was cancelled a number of times. They have helped me to be able to look forward to the future’._ **The Kent and Canterbury Hospital Haemophilia Department (K&C)** From April 27, 2022, HBDCA commenced, as anticipated, the one-year pilot which provides a similar level of psychological support to K&C patients to that provided to patients at the Royal London. During this time, HBDCA carried out 100 contact calls with patients/family members referred by the MDT, 16 preassessment sessions and provided 150 psychotherapeutic sessions to the 14 patients wishing to access support. 9 **10 |** P a g e Quote from a member of the K&C MDT: ‘ _Thank you for all that you and your team do for people with bleeding disorders, it is very much appreciated and lifechanging’_ . As with the RLH, any patients who decided they did not require psychotherapeutic support were notified that they could access this support at any time in the future. They were also notified of any relevant peer support groups commencing or any relevant, themed wellbeing workshops. HBDCA ran three in-person wellbeing workshops on the following themes: Newly Diagnosed Families (NDF) 19 November 22 Quote from a parent who attended the NDF workshop: ‘ _The therapists were so lovely, they really listened and were very caring. They offered support to both me and my husband. The only thing that could have been better was if more families had turned up. But, actually, it turned out fine as the event was more personal and relevant to us.’_ Women with Bleeding Disorders 25 February 23 Needle-phobia (Adults and children) 25 March, 23 Two patients at the K&C are now members of the Rare Peer Support Group. Statement from a K&C patient being supported by HBDCA: _‘I have been receiving help from HBDCA with one of your wonderful psychotherapists, Lisa. To say these sessions have improved my life would be an understatement. I have lived with haemophilia for 30 years and finding myself increasingly affected by the condition over the last decade, I can say that I was not in a good place when I was referred to your service. If I had not been offered the assistance of HBDCA, I may very well not have been around to write this email to you now. For me the assistance offered was life-saving. I now have a better outlook on life and strategies to cope. I have benefitted greatly from the services offered and have no doubt that there are other men in the same situation I found myself in, who would benefit also’._ For the first time HBDCA is supporting a couple with joint psychotherapy due to their unique circumstances. 10 **11 |** P a g e Quote from K&C couple: _‘Marion is very helpful when she calls us to talk through things’._ N.B. As well as providing one-to-one psychotherapy, HBDCA has also carried out regular check-in calls with a small cohort of patients from the RLH and the K&C, who require this, including the couple noted in this report, due to their circumstances and issues which have imposed greater isolation on them all compared to most in the bleeding disorder community. **Support beyond One-to-One Therapy** In addition to individual psychotherapeutic support, with the peer support groups and wellbeing workshops held this year HBDCA has supported a further 80 people, including parents, children, siblings, grand-parents and partners from across all cohorts within the bleeding disorder community. **St George’s Hospital Haemophilia Department** Despite not having a formal agreement with the Haemophilia Department at St George’s, Tooting, with whom HBDCA has worked informally for the past 2 years, continued to support patients there on an ad hoc basis, including providing letters for patients in order for them to apply for funding from the England Infected Blood Support Scheme (EIBSS). **Hammersmith Haemophilia Department - Imperial College Healthcare NHS Trust / Hammersmith Hospital** HBDCA was approached in early March, 2023, by the Hammersmith Haemophilia Centre to explore, in the coming months, the engagement of HBDCA to provide psychological support to its patients and what form that might take dependent on budget etc. It is anticipated, funding allowing, that this partnership will commence in early 2024. **Birmingham Hospital Haemophilia Department - Haematology - University Hospitals Birmingham NHS Foundation Trust** HBDCA was contacted by Birmingham Haemophilia Centre in late March, 2023. They had been struggling, and continue to struggle, to find a psychologist within their Trust to join their MDT. They, therefore, asked if HBDCA would consider supporting patients they have identified as having urgent need of psychological support, on a patient-bypatient basis. This is being discussed currently with the aim of commencing this support in May, 2023. 11 **12 |** P a g e **HBDCA Rare Peer Support Group** This monthly (virtual) peer support group which commenced in the summer of 2022, is facilitated by HBDCA on a voluntary basis. It is not aligned to any Centre and is available to any women in the UK with a rare bleeding disorder. It now has10 members ranging in ages from early twenties to mid-seventies. The rare disorders range from Glanzmann’s Thrombasthenia, Factor VII Deficiency and Bernard Soulier Disease. The women who attend this group had previously experienced a great sense of isolation as well as issues around delayed diagnosis and treatment. For some women this group has enabled them to meet others with the same rare disorder for the very first time. This group has quickly bonded and have named themselves: Blood Sisters. The intention, funding permitting, is to bring this group together in person, in the near future. HBDCA has been able to signpost this group to other Rare initiatives and also to keep them informed of any European Rare and Inhibitor Network (ERIN) activities they might like to participate in. HBDCA has encouraged the members of this group to create their own WhatsApp group so that they can keep in touch with each other in-between meetings, as an added layer of support for each other. Quote from a member of the Rare Peer Support Group: ‘ _HBDCA has provided a safe space and platform to meet other women with the same or other rare bleeding disorders who face the same daily challenges living with a rare bleeding disorder brings. It provides reassurance that you are not alone and also provides an opportunity to learn from each other about managing day to day living and bleeding episodes. I really value this group and feel it has helped develop a much-needed support network for women with rare bleeding disorders’._ **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 2022 – 2023 with HBDCA now supporting 11 people. 220 one-to-one psychotherapeutic sessions were provided to THT clients during this year. 12 **13 |** P a g e Very sadly, it must be noted that during this time one of our long-term THT clients from the Infected Blood community passed away. The impact this had on the psychotherapist and on the team itself has spurred HBDCA on to create written information on how to manage one’s own sense of bereavement as a psychotherapist. This written content will be included in the Self-Care section of the HBDCA team handbook currently being developed. HBDCA believes that this information will help to support the team, especially in anticipation that there will inevitably be more deaths in the coming months and years of people we have grown to know well. Separately, having mutually agreed and identified that there was a need for this, THT has contracted HBDCA for a twoyear period, which commenced at the end of January, 2023, to facilitate 4 peer support groups per month for the Infected Blood community. These meetings are virtual and facilitated by Christina Burgess. The meetings last on average 90 minutes each with 2 meetings per month for the Infected cohort and 2 meetings per month for the Affected cohort. 6 meetings have been held so far between 1 February, 2023 to 31 March, 2023. **England Infected Blood Support Scheme (EIBSS)** From April 2022 to March 2023 HBDCA carried out nearly 100 psychotherapeutic therapy sessions for 7 clients, as well as completing pre-assessment sessions for each one. In addition to providing this psychotherapeutic therapy, 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 the clients to be awarded funding by EIBSS. For some clients during this period more than one letter was required. The majority of HBDCA’s EIBSS clients apply for further funding beyond that provided for one year’s psychotherapeutic support. Some of our clients are now in their third year with HBDCA. This is testament to the level of trust between these very vulnerable, complex clients and our expert psychotherapists. N.B. It is important, for the recording of HBDCA’s work and output during this particular period, to note as in previous years, that each client, whether from the Haemophilia Centres, from THT or 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 13 **14 |** P a g e 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 2022 - 2023. A quote from a person supported by HBDCA through EIBSS: ‘ _Christina and her team have been like a lifeline to me. I seriously do not know how I would have coped during this time. Just being able to talk to someone and get so much off my chest without explaining myself or being scrutinised is the best medicine I could have asked for’._ **Infected Blood Inquiry and community** HBDCA Director, Christina Burgess, has continued to attend Inquiry evidence days in person. Whilst attending the Inquiry she has been able to meet with a broad section of the Infected Blood community and with counterparts at other organisations such as The UK Haemophilia Society and the Hepatitis C Trust. Christina Burgess attended the Inquiry when Sir Robert Francis, QC (now KC), shared his report on the Compensation Framework, and how he and his team see it working. HBDCA, in the previous year, had petitioned Sir Robert to include psychological support to any person who might need it, as part of any compensation package agreed by the government. Psychological support has indeed been included, thankfully, although in what form that service will look like is not yet clear at this point. HBDCA also wrote to the Chair of the Inquiry, Sir Brian Langstaff, following his first Interim Report in the summer of 2022, to ensure that he would continue to advocate for all people, infected and affected, to be provided with urgent interim payments whilst the Inquiry is still ongoing, rather than just the two cohorts he had recommended in this first Interim Report. The second Interim Report was published in March, 2023, with Sir Brian petitioning the government to do just that, to provide interim payments to all cohorts. It is not yet clear how the government will respond. 2023 – 2024 will be a crucial time for the Infected Blood community and HBDCA is already aware of the impact on those it supports and the wider Infected Blood community as a whole. There are people who already are experiencing renewed isolation due to the majority of hearing days now being concluded, so that they can no longer meet other people from the Infected Blood community in person. The length of the Inquiry (nearly 5 years currently) is also taking its toll on so many who are physically and emotionally 14 **15 |** P a g e exhausted after more than 30 years of waiting. And for some, the anticipation is quite terrifying. It has been voiced to HBDCA that some people had subconsciously thought the conclusion of the Inquiry would bring them closure and bring back the loved ones they had lost, whereas they are beginning to realise that whatever outcomes there are: financial and psychological compensation, apology from government, a sense of justice being served, that their lives will not really change and the losses and sense of bereavement will not abate. In order to ensure that HBDCA will be effective and at the top of its game to support such a vulnerable group of people, HBDCA is already beginning to prepare itself and the psychotherapeutic team to ensure that, especially, the psychotherapists have support mechanisms in place to enable them not to be overwhelmed or burnt out when the Inquiry concludes and the Final Report published so that they can be as supportive as needed. The Final Report is anticipated to be published in Autumn 2023 and the Public Inquiry concluded with a government response to the findings expected soon after that. Quote from a key campaigner in the Infected Blood community: ‘ _As someone very active within the bleeding disorder community, I cannot stress enough how important HBDCA is. They not only provide the personalised support required but they start from a place of knowledge and validation. This helps to minimise further trauma and gives the team a unique approach to their clients. Offering the community a genuine opportunity to feel comfortable when recalling some of their darkest memories cannot be underestimated. It is why I feel so strongly about suggesting people speak to them.’_ **Providing information for healthcare professionals** HBDCA, was approached in early 2022 to be the lead facilitator in a CSL Behring (pharmaceutical company) funded project which will explore, at a roundtable, the inequality of healthcare provision for women and girls with bleeding disorders. The roundtable has been further delayed but is anticipated to be held in 2023 - 2024. Christina Burgess was asked to write an article for the Nursing Times, aimed at nurses and healthcare professionals, which was published in March, 2023. The article shared with nurses what they might need to be more aware of, from a psychological/psychosocial point of view, regarding the impact a bleeding disorder will have during a girl and woman’s life stages: puberty, relationships, cultural issues, their journey with pregnancy and childbirth and the menopause. 15 **16 |** P a g e **HBDCA Team-building Week-end August, 2022** HBDCA held its first team-building event. Its purpose was to bring the team together, including trustees, to learn from each other, to share knowledge and information about bleeding disorders, to consider HBDCA’s direction and focus in the coming year and, importantly, to further enhance the strong bond we all have with each other and further develop a joint sense of purpose in supporting the bleeding disorder community going forward. The event was hugely beneficial and will become an annual event, funding permitting. **Self-care Wellbeing Workshop for Parents and Carers for Local Families with Bleeding Disorders (LFwBD) charity – 11 March, 2023** HBDCA facilitated a day-long wellbeing workshop at the Royal Foundation of St Katharine’s in London for LFwBD. The day was very well-received and included sessions on mindfulness and self-care. It also allowed the participants to meet with each other and to share stories, experiences and useful tips/advice with each other, with the aim of increasing knowledge and self-awareness, reducing isolation and reinforcing the peer support network within LFwBD and publicising more widely, HBDCA and its services. There were 15 attendees. This event is to become an annual fixture between HBDCA and LFwBD. The HBDCA Director is a committee member of LFwBD, an organisation which shares a similar ethos to HBDCA around service to the bleeding disorder community and the provision of essential care initiatives, including around mental health. **HBDCA Psychology in Gene Therapy Roundtable** HBDCA was awarded a grant from CSL Behring to fund an HBDCA gene therapy initiative. Having previously been involved in the creation of European Principles of Inhibitor Management, a collaboration between the European Haemophilia Consortium (EHC) and European Association of Haemophilia and Allied Disorders (EAHAD), HBDCA had decided that it would be very beneficial for the gene therapy community if a similar set of Principles were created around access to psychology, as this is not available at every Haemophilia Centre. This grant enabled HBDCA to realise its intention to organise and facilitate a roundtable with attendees from across the UK from all disciplines within the MDT along with patient experts, a patient advocate organisation and bleeding disorder researchers. The topic discussed was how it might be possible to create a set of Principles of Psychology in Gene Therapy and what these principles 16 **17 |** P a g e should include. The roundtable members would also, at this meeting, agree a plan for the coming 18 months in order to create and finalise those principles. Gene Therapy is a new treatment which is to be made available in the coming year to those who are eligible to receive it. It will require sound psychological support at each stage of a person’s journey with it, and potentially for their family members also. The roundtable was held between 13 – 15 January, 2023, in Birmingham. 18 experts participated, including MDT members, the HBDCA team itself and psychologist colleagues who work in the NHS represented by the HPA (Haemophilia Psychologists Association). There was also additional written content shared at the meeting from healthcare professionals and academics working in gene therapy who were unable to attend the meeting in person but who wished to help inform the principles. A short film by a patient expert who had already undergone gene therapy was also shared with attendees, along with a Zoom discussion with Professor Emeritus, Ted Tuddenham, one of the pioneering haematologists who was instrumental in developing gene therapy treatment. The roundtable was very successful with everyone agreeing on the need for principles and what they should look like. A 20-page report was then created by HBDCA post the roundtable which was disseminated to all interested parties in February, 2023, with a view to progressing this project over the coming 18 months. **European Association of Haemophilia and Allied Disorders (EAHAD)** In her role as Vice-Chair of the EAHAD Psychosocial Committee, Christina had been asked to report back on the gene therapy roundtable to the Psychosocial Committee. The committee had stated it was very interested in this HBDCA topic. During the EAHAD Congress 2023 which was held in Manchester in early February, meetings were held between Christina Burgess and healthcare professionals who had attended the HBDCA roundtable. There was also an EAHAD Psychosocial Committee meeting following this. The outcome of all these meetings was that the EAHAD Psychosocial Committee, supported by EAHAD itself, decided that it would like to take the original HBDCA project which was to create UK Principles even further with the intention, during 2023 – 2024, to creae European Principles of Psychology in Novel Therapies (Gene Therapy) instead. These Principles would, of course, also apply to the UK. It was therefore agreed that the EAHAD Psychosocial Committee would adopt this project as their key piece of work in the coming 18 months, with Christina Burgess, representing HBDCA, as the lead, with the intention of 17 **18 |** P a g e holding a similar European roundtable at the next EAHAD Congress in Frankfurt in February, 2024. The finalised European Principles of Psychology in Novel Therapies (Gene Therapy) will be launched at the EAHAD Congress in February, 2025. The aim is that these European Principles will be something all Haemophilia Centres involved in gene therapy and other novel therapies will aspire to, with the potential that Centres who sign up to these principles would attain a kite mark of excellence in doing so. HBDCA is extremely proud to have been the instigator of this important project with the hope that it will bring enormous benefit from a psychological/psychosocial perspective to all patients undergoing gene therapy, enabling each one of them to have equitable access to high quality psychological provision, across Europe. In addition to this, at the February, 2023, Congress, Christina Burgess presented a session at the Allied Health Professionals’ Day Psychosocial conference on the topic, ‘The benefit of running peer support groups’. Two academic papers by the EAHAD Psychosocial Committee, which had both been in the review process last year, have now been published in the academic journal, _Haemophilia_ . One paper addressed the need for increased psychological support at Haemophilia Centres across Europe, the other paper, of which Christina was lead author, was on the impact of Covid-19 on healthcare professionals and patients and what has been learnt from this experience to help inform psychological/psychosocial care during future pandemics. **European Haemophilia Consortium (EHC)** Christina Burgess continued in her role as a long-standing member of the EHC Inhibitor Working Group (IWG), facilitating peer support groups for the partners of people with an inhibitor. During this period, Christina Burgess 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. Christina Burgess, representing HBDCA, attended the EHC Conference in Copenhagen in October, 2022, where she helped facilitate inhibitor sessions and was a guest speaker at a symposium on psychological benefits as an outcome of Covid-19. She shared that the main benefit was that mental health and wellbeing had become much more widely 18 **19 |** P a g e spoken about during the pandemic with people, including now, thankfully, many healthcare professionals and organisations, realising how essential it is to support people to have good mental health. This is especially relevant for the bleeding disorder community as physical and mental health go hand in hand and impact greatly on each other. At this time, the Inhibitor Working Group was merged into a new committee, ERIN (European Rare and Inhibitor Network) in order to provide people with rare bleeding disorders similar support to that which is now standard for the majority of people with inhibitors. Due to this change, the EHC Summit in December, 2022, at Barretstown, Ireland, was for the ERIN community. Christina Burgess facilitated a self-care wellbeing event as well as holding peer to peer support meetings for partners from both cohorts. As Christina Burgess’s IWG term came to an end in December, 2022, she had to reapply for the new committee along with all the other members of the IWG. Christina Burgess was elected as a member of the new committee with a further three-year term. In 2022 Christina Burgess, again representing HBDCA, was invited to become a member of the EHC Think Tank which is made up of a group of experts and healthcare professionals to inform a long-term study on: _The unmet needs of mental health support across all areas in the bleeding disorder community._ This project is ongoing. The involvement of HBDCA, represented by Christina Burgess, in EAHAD and the EHC, has enabled the HBDCA psychotherapy team to have continued access to up-todate information and current teachings. Either from a medical or treatment perspective through EAHAD, or through patient advocacy initiatives it might be asked to contribute to from a psychosocial perspective for the EHC. Information on new treatments and medical innovations ensures that the HBDCA team can be more knowledgeable when supporting patients who may be undergoing these new treatments. By HBDCA making a long-term contribution to the work of these organisations and having a physical presence at key events such as their annual conferences HBDCA’s profile continues to increase along with its reputation as an expert provider of psychological services in the United Kingdom. Quote from Lisa Fowler, HBDCA Deputy Director and Governance Lead: ‘ _I feel that the involvement in both the EHC and EAHAD has been to a degree integral in continued development and awareness of haemophilia provision and care. The multi -disciplinary perspective has continued to offer a deepening understanding of the intricacies of patients’_ 19 **20 |** P a g e _experiences alongside the advancement of care through EAHAD’s research projects which offer further recognition of protocols which may inform how we attend to clients in the room.’_ **HBDCA website** HBDCA is currently undergoing a major overhaul of its website to bring it completely up-to-date. Further content to its website will reflect the different and diverse cohorts it works with and areas of work it carries out, such as Women with Bleeding Disorders, Newly Diagnosed, Rare Bleeding disorders, Novel Therapies (Gene Therapy), and work on behalf of the LGBTQ community. It will also highlight HBDCA’s voluntary work and recognise further the team and the value they bring to HBDCA. HBDCA intends, at a time in the future, post the conclusion of the Infected Blood Public Inquiry, possibly in 2024 - 2025, to create a special legacy section on its website for the Infected Blood community so that the immense impact on this community is never forgotten and in order to demonstrate how important psychological support has been for this community, and how needed, and how HBDCA has been able to participate in this provision. The HBDCA website, which is an extension of the team and the work being carried out, as well as a source for signposting to external organisations and partners, is a useful resource for the community. **HBDCA Governance and Team Support** HBDCA continues to provide its psychotherapeutic team with monthly supervision sessions. 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 also continues to hold 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** HBDCA has now fully commenced the volunteer project with the Haemophilia and Bleeding Disorders community in Kyrgyzstan which began with a workshop in March, 2022. Up until this project there had been no psychological support available at all to this vulnerable community. 20 **21 |** P a g e Since then, HBDCA has been facilitating monthly peer support groups for three different groups: Single Mums, Parents of Newly Diagnosed Children and Young Adult Men with Haemophilia, all on a voluntary basis. Three members of the HBDCA team have also volunteered some hours per month each to support three very vulnerable people within the Kyrgyz community with (virtual) one-toone psychotherapy. HBDCA is extremely grateful to these team members for giving up their time and for providing such excellent, much-needed support. We are also very grateful to our contact in Kyrgyzstan who acts as an interpreter for all our sessions. Without her, HBDCA would not be able to communicate with these clients. Initially, HBDCA was concerned that there would be a barrier to this work both due to language and the fact that it is remotely carried out, but this has proved to not be the case at all, with strong bonds and trust being forged with these groups. Funding permitting, the intention will be, in the next year or so, for HBDCA to visit Kyrgyzstan in person with its small team of volunteers to run three in-person psychological wellbeing events. During this visit HBDCA would also hope to seek out and meet with sympathetic psychologists from Kyrgyzstan who may be interested in becoming involved in bleeding disorder support there. HBDCA would continue to act as a trainer and mentor but with the aim that the Kyrgyz community will eventually take ownership of this project, itself. HBDCA believed when it originally commenced this project that it was important to give back to a country where there was no psychological support. In doing so, the hope had been that not only would the participants from Kyrgyzstan benefit, but that so too would the HBDCA team itself. This has proved to be correct with those in the HBDCA team who are involved in this initiative developing further skills and increased psychological insight through supporting these vulnerable cohorts. HBDCA hopes that the important work it has done so far will, in 2024 - 2025, gain the recognition of the World Federation of Hemophilia, with HBDCA’s aspiration that the model it has created might then be used to provide effective, much-needed psychosocial support to other countries where there is an absence of this support also. Quote from Lisa Fowler, HBDCA Deputy Director and Governance Lead: _‘Having the opportunity to support individuals in the Kyrgyzstan project has been instrumental in deepening my awareness of the profound sense of loss that particularly mothers have faced in the haemophilia community. This piece of work has centred largely around complex trauma and grief that has almost certainly been compounding of the work I have been involved in with the contaminated_ 21 **22 |** P a g e ||_blood community who also present with such complex_
_issues.’_| |---|---| |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.| ## **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**
HBDCA’s provision of psychotherapeutic support at the
Royal London has seen the patient numbers grow and the
relationship with the multidisciplinary team continue to
develop very positively. This work will benefit from the
addition of a part-time child psychologist once the funding
for this is approved, which is anticipated to be in the next
financial year.
Christina Burgess continues to have an NHS Smart Card,
along with remote access to the RLH system.
The Empowerment and Pain Management Wellbeing
Workshop (virtual) was very well-received. So much so that
an in-person wellbeing event on the same theme is intended
to be held in the coming year. The two peer support groups:
Adults with a Bleeding Disorder, and Women with Bleeding
Disorders which commenced in March, 2022 continue to be
facilitated on a monthly basis. As with the rare peer support
group, HBDCA’s intention is to bring these two cohorts
together at least once a year at in-person meetings next
year. Attendees in both groups have developed a
camaraderie with each other and have all found a
welcoming space to be with other people experiencing
similar lives and issues.
**Comment from a senior member of the MDT at the RLH:**
_‘This is brilliant work! I have finally had a chance to read_
_your report and it highlights the amazing work you and the_
_team have done over the last year._
_I look forward to continuing to work with you and the_
_HBDCA team over the next five years’._
**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| |---|---| 22 **23 |** P a g e 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, longawaited, effective psychotherapeutic support to this vulnerable group. With the anticipated Final Report and conclusion of the Infected Blood Inquiry due in Autumn, 2023, the coming two years, post these, will see this support needed more than ever. **England Infected Blood Support Scheme (EIBSS)** During the period 2022 - 2023 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. **Education and Information** Through effective communication and by developing relationships with like-minded healthcare colleagues and organisations such as Haemnet, the HPA, Haemosexual, The UK Haemophilia Society, the Hepatitis C Trust, the Terrence Higgins Trust, Local Families with Bleeding Disorders, and the Kyrgyz National Member Organisation (NMO), along with listening to individuals within the community itself, HBDCA has been able to reach out to, and inform, not only those in the Infected Blood community but also the wider bleeding disorder community, including women with bleeding disorders and with rare disorders, those undergoing gene therapy trials, and also our healthcare professional colleagues across the MDT, about the psychological issues people with bleeding disorders and their family members experience. HBDCA has been able to share this psychotherapeutic knowledge and insight with 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. 23 **24 |** P a g e **Team Meetings post Covid-19** HBDCA continues to hold a weekly Zoom meeting with its therapy team, and regular Zoom meetings with the Trustees. This is an ongoing and important part of HBDCA culture, which started at the beginning of the Covid-19 pandemic, with the belief that supporting one’s team and colleagues and maintaining excellent channels of communication will ensure improved support for clients and patients. Now that Covid-19 has diminished in its impact, HBDCA is working towards ALL wellbeing workshops in the coming year being in-person events. ## **HBDCA Strategic Plan 2022 - 2023** 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 Kin dom g |Achievements against
objectives set in Strategic
Plan 2022 - 2023|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 continued to carry out work for
St George’s Haemophilia Department, in Tooting, south
London, with an expectation also of supporting patients at
the Hammersmith Haemophilia Centre in the near future.
HBDCA, has now commenced support for patients at the
Kent and Canterbury Hospital Haemophilia Department
with a one-year pilot due to conclude at the end of April,
2023.
Should the additional Centre, Birmingham, engage HBDCA
to support its patients and family members, which is
anticipated to commence in May, 2023, HBDCA will have
fulfilled that element of its 2022–2023 Strategic Plan.| |---|---| 24 **25 |** P a g e ||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 continued to
demonstrate committed, expert support for this community
as well as actively engaging with like-minded charities such
as the UK Haemophilia Society and the Hepatitis C Trust in
advocating for the Infected Blood community. HBDCA has
also, during this period, provided key knowledge, insight
and information to the Infected Blood Inquiry itself on
psychological issues and themes in order to positively
inform decisions which will affect this vulnerable group
when the Inquiry concludes.
HBDCA has continued to keep up to date with all the
outcomes of the Inquiry, attending many evidence days in
person, including being in attendance on the day the
Compensation Framework was presented.| |---|---| |Investment performance
against objectives|All the objectives achieved during the period 1 April 2022 –
31 March 2023, were carried out within the monies received
by HBDCA.| ## **Financial Review** |Review of the charity’s
financial position at the end
of the period|HBDCA commenced 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. As
mentioned in the 2021 – 2022 Report, a new system was
agreed with the payor to ensure a similar delay in paying
HBDCA would not occur in the future. At 31 March, 2023,
HBDCA closed the period with a balance of £12,487.00 in
its account.
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, 2022 –
31 March, 2023.| |---|---| |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 of specialised psychological support it offers the
bleeding disorder community.| |Amount of reserves held|Reserves as of March 2023 amounting to £10,795.00 in
total.| |Reserves|HBDCA has carried out a financial forecast showing that it
should be able to hold 6 months’ reserves in the coming
financial year, 2023 – 2024, and potentially up to 12
months’reserves in the following financial year.| 25 **26 |** 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, and the benefit of the psychological care it
provides being recognised more widely, 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. HBDCA now has seven
psychotherapists in its team and will address this issue
further in 2023 – 2024, including with the anticipated
addition of a part-time child psychologist.| |---|---| |In conclusion|HBDCA has continued to grow and to thrive.
As well as client/patient numbers increasing this year, in all
areas of HBDCA activity, including at new centres it has
provided psychotherapeutic support to, HBDCA has also
increased its team and put in place new strands of support
for the team itself, including during the team-building week-
end, as well as continuing to ensure that HBDCA
governance documents and policies are fit for purpose.
HBDCA benefits from a committed, supportive and
engaged group of Trustees who ensure HBDCA achieves
its aims and objectives, and aspires always to enact its
vision, whilst ensuring these are always carried out within
HBDCA’s means in order to ensure its future is protected
and the services it provides have longevity.
HBDCA has engaged an accountant, EBJ Accounting,
during this year which has been very beneficial in ensuring
HBDCA remains in good financial shape.
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.
HBDCA has also continued to support the team itself and
provide more opportunities for learning and supervision.| 26 **27 |** P a g e ## **Structure, Governance and Management** |**Structure, Governance**|**and Management**| |---|---| |Description of charity’s
trusts:|| |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**| ## **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)**
**Position (e.g., Secretary,**
**Chair, etc)**
**Date**||| |---|---|---| ||**Nina Janine Beer**|| ||
Trustee|| ||25/01/2024|| ||25/01/2024|| 27 **28 |** P a g e ## **Independent Examiner’s Report to the Trustees For the year ended 31 March 2023** I report to the Trustees on my examination of the accounts of the charitable company for the year ended 31 March 2023. ## **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 25[th] January 2024 ## **Haroon Ashfaq FCCA** 28 291 Page staternent of FinancialPANitie51irthi￿5u￿￿aryOfkn)meaTrd EMpenditureAux>untl Year ended 31 Marth 2023 U¢L￿tn¢tQd Resincl Fut 21rJ TotJl Fund5 2022 Tot& F￿Thd$ Otattts&tN)rdb 30,( 9S.115 56.737 56,737 6iJiS 12.los i23 77989 76.245 20,975 523 29J)78 13.519 615 Other 97.74J 43.212 10246 13,525 Total fLmdsbrntsgbt f4n¥*d 14273 ISA28 I￿98 TOta1fi5Dth￿jEJ1on￿￿d {￿1) liJ96 10.795 15823 29 **30 |** P a g e The charity was entitled to exemption from audit under Charities Act 2011 and trustees have not required the charity to obtain an audit in accordance with Charities Act 2011. Trustees acknowledge their responsibilities for complying with the requirements of the Charities Act with respect to accounting records and the preparation of accounts. These accounts have been prepared in accordance with the provisions applicable to charities under audit exemption regime and in accordance with FRS102 SORP. The accounts were approved by the Trustees on 25[th] January 2024 and signed on their behalf by: - ## **Nina Janine Beer** ## **Trustee** 30 **31 |** 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 Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) issued on 16 July 2014 (the Charities SORP); and - the Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland (FRS 102); - the Charities Act 2011. 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. 31 **32 |** 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 made to therapists. None of the trustees have been paid any remuneration or received any other benefits from employment with this charity or a related entity. 32