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20th January 2021 -
31st March 2022
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Annual report & financial statements
supporting individuals and families affected by immunodeficiency
www.immunodeficiencyuk.org
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Contents
About Immunodeficiency UK
Statement of Trustees’ responsibilities
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07 Chair of Trustee statement
Why we are needed: Currently in the UK
500,000+
people have an impaired immune system
5,000+
people have a diagnosed primary immunodeficiency
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10
14
17
22
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Our achievements at a glance
Living with immunodeficiency
Supporting the community through our helpline services
Supporting the community
Our continued response to the COVID-19 pandemic
Supporting better mental health
Plans for the next year
Our incredible fundraisers
400+
different rare conditions are recognised as primary immunodeficiencies
6,800+
people with primary and secondary immunodeficiencies rely on the lifesaving therapy immunoglobulin
Primary and secondary immunodeficiency are underdiagnosed
COVID-19 has made life extremely challenging for people who have immunodeficiency
The need for
Immunodeficiency UK’s patient support services has never been greater
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Financial statements
About Immunodeficiency UK
Immunodeficiency UK was registered as a charity on 20 January 2021 as a continuum of the work of Primary Immunodeficiency UK (PID UK) in representing and supporting individuals and families affected by primary immunodeficiency in the UK. From 2013 to the launch of Immunodeficiency UK, PID UK operated as a division of Genetic Disorders UK (company registration number 07554771 and registered charity number 1141583).
The charity officially launched on 1 April 2021 following the transfer of all assets belonging to PID UK to Immunodeficiency UK, through a Deed of Transfer agreement approved by board resolution from Genetic Disorders UK’s trustees, taking effect at 23:59 on 31 March 2021. Building on the work of PID UK, Immunodeficiency UK supports people affected by primary and secondary immunodeficiencies.
Immunodeficiency UK plays a vital role in supporting and representing people affected by primary and secondary immunodeficiencies
Primary immunodeficiencies (PIDs) are a group of over 400 different conditions that affect how the body’s immune system works because some parts are missing or not functioning. Most people with PIDs are born with the condition. PIDs are mainly genetic disorders, meaning they are inherited and can be passed on from one generation to the next. Because PIDs are rare, some people remain undiagnosed for many years, resulting in organ damage and even disability.
Secondary immunodeficiency (SID) occurs when the immune system is weakened by a treatment or another illness. There are many potential causes of SID but the most common examples are blood or bone marrow disorders, and certain drugs and treatment for cancer. Some cancers can be responsible for SID, too.
Having a PID or SID means having reduced or no natural defence against germs, such as bacteria, fungi and viruses, which surround us every day. So, people with PID and SID get infections more often than is normal; they can take longer to get better when they have antibiotic treatment and, even then, the infections can keep coming back.
A large proportion of people affected by a PID and SID have immunoglobulin replacement therapy, which is produced from donated plasma. This therapy, along with antibiotics and other antimicrobial medicines can help keep those with immunodeficiency free from infection. More specialised treatments and potential cures for PID include haematopoietic stem cell transplant, enzyme replacement therapy and gene therapy.
COVID-19 has made life extremely challenging for people with PID and SID
Due to their underlying health conditions, some people with PID and SID cannot make antibodies against COVID-19. They may have had three or more COVID-19 vaccinations but, unlike most people, these may have given them little or no protection against infection. So, they can be at the highest risk of becoming seriously ill from COVID-19. This extremely vulnerable community of patients has taken every precaution, followed the guidance, including on shielding, and at times lived away from loved ones to minimise the risk of getting COVID-19.
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About Immunodeficiency UK
Immunodeficiency UK is the voice of people affected by PID and SID
Our mission and strategy
Immunodeficiency UK’s mission is to work with patients, healthcare professionals and other relevant organisations to ensure that those affected by primary or secondary immunodeficiency have the knowledge needed to manage their condition effectively and to ensure that their health needs are understood and addressed by those involved in policy and delivery of healthcare.
To help Immunodeficiency UK in its work, we are a member of several umbrella groups, including Genetic Alliance UK, the Specialised Healthcare Alliance, Benefits and Work, The National Council for Voluntary Organisations and The Foundation for Social Improvement. Immunodeficiency UK is the UK national member of the International Patient Organisation for Primary Immunodeficiencies (IPOPI).
Our main strategic priorities are:
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To provide assistance, advice or guidance in relation to the diagnosis, management and treatments for primary and secondary immunodeficiencies, and to improve quality of life for those affected
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To promote awareness and understanding of primary and secondary immunodeficiency, and the impact on those affected, among the general public and within the medical profession To provide a helpline service, events, practical support and advice
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To encourage and support research into the causes, treatments, prevention and cures for primary and secondary immunodeficiency, and to publish the useful results of that research.
Our trustees
Dr Matthew Buckland – Chair (appointed 20-1-21) Hannah Bruce (appointed 20-1-21) Valerie Brisse-Uhlig (appointed 21-3-22)
Lisa Gagliani MBE (appointed 20.1.21) Diane Hammond (appointed 21-3-22) Jane Elizabeth Shepard (appointed 21-3-22)
Our staff
Chief Executive Officer (CEO) Dr Susan Walsh Fundraising and Marketing Jen Rush
Our Advisory Panels
Immunodeficiency UK is extremely grateful for the support of our patient representative and medical advisory panels.
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About Immunodeficiency UK
Patient representative panel
Our patient representatives are dedicated volunteers who act as advisers, ambassadors and spokespeople for Immunodeficiency UK. They are either directly affected or have a family member affected with an immunodeficiency.
Marian Armstrong , patient representative for Cumbria and Lancashire Margaret Bennett , patient representative for the West Midlands Hannah Bruce , patient representative for the south-east region Hannah Butler , patient representative for London Samuel Davis , patient representative Clare Dyer, patient representative for the south Wales area Alison Fox , patient representative for London Stacey Garrity , patient representative for the Manchester area Carolyn Grundy , patient representative for the north Wales area Michael Ingleston , patient representative for Northern Ireland Rae McNairney , patient representative for Scotland Drew Tyne , patient representative for London Fiona Watt , patient representative for Scotland
Medical advisory panel
The Medical Advisory Panel reviews the content of our patient information to make sure that it is of high quality, clinically and scientifically. The panel provides updates to the charity on advances in immunodeficiency, scrutinises new projects and ensures that Immunodeficiency UK is engaged in activities that are medically sound and based on up-to-date science.
Dr Peter Arkwright, Consultant Immunologist, Dept of Paediatric Allergy and Immunology, Royal Manchester Children’s Hospital, Manchester
Dr Claire Bethune , Consultant Immunologist, Derriford Hospital, Plymouth
Dr Matthew Buckland (Chair), Consultant Immunologist, Great Ormond Street Hospital and Barts Health NHS Trust, London
Dr Mari Campbell , Clinical Psychologist, Royal Free London NHS Foundation Trust and Honorary Associate Professor, University College London
Emily Carne , Advanced Nurse Practitioner, Dept of Immunology, University Hospital Wales, Cardiff Professor Helen Chapel, Professor of Clinical Immunology and Group Head, John Radcliffe Hospital, Oxford
Lucy Common , Immunology and Allergy Advanced Clinical Nurse Specialist, Salford Royal Hospital Dr Lisa Devlin , Consultant Immunologist, Regional Immunology Service, Belfast
Dr Tariq El-Shanawany , Consultant Clinical Immunologist, University Hospital Wales, Cardiff Dr Tomaz Garcez , Head of Service and Consultant Immunologist, Central Manchester University Hospitals, Manchester
Dr Aarn Huissoon , Consultant Immunologist, University Hospitals Birmingham
Dr Tasneem Rahman , Consultant Immunologist, Epsom & St Helier University Hospitals NHS Trust in South London and Surrey
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Statement of Trustees’ responsibilities
The trustees are responsible for preparing the trustees’ report and the financial statements in accordance with applicable law and regulations. Under company law, the trustees must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the charity and of the net incoming resources for that period.
Structure, governance and management
Governing document
Immunodeficiency UK is a registered charity and governed by its constitution dated 20 January 2021.
Trustees
The board of trustees is responsible for the overall governance, policy and strategic direction of Immunodeficiency UK. The trustees have the legal responsibility for charity operations and the use of resources in accordance with the objects of the charity.
During the period 20 January 2021 to 31 March 2022, the trustees met a total of 14 times.
The charity’s work is supported by the Patient representative panel and Medical advisory panel, which advise the charity on the provision of appropriate care and information for people with primary and secondary immunodeficiency.
Public benefit
The trustees confirm that they have complied with the duty in section 17(5) of the Charities Act 2011 to have due regard to the guidance issued by the Charity Commission on public benefit.
Executive management
The executive organisation is led by the Chief Executive Officer (CEO), who reports to the Board of Trustees. The CEO publishes reports and performance indicators for each trustee meeting which are then used by trustees to judge progress against priorities for the year.
Risk management
The trustees have overall responsibility for ensuring that Immunodeficiency UK is managing risk in a professional, responsible and constructive manner. The trustees seek to ensure that all internal controls, and in particular financial controls, comply in all respects with best practice and the guidelines issued by the Charity Commission.
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Trustees’ report
The trustees present their report for the period 20 January 2021 to 31 March 2022 under the Charities Act 2011, together with the financial statements for that period. The financial statements comply with the Companies Act 2006, the charity’s governing document and the relevant Statement of Recommended Practice (the Charities SORP (FRS 102).
I am delighted to contribute to the first annual report for Immunodeficiency UK.
The transition from Primary Immunodeficiency UK, under the umbrella of Genetic Disorders UK, to an independent charity occurred during a global pandemic. Alongside the challenges of setting up a new organisation, the lives of the very patients we represent were being severely affected by COVID-19. I am proud of the way that Immunodeficiency UK led the narrative for patients and their families living with the threat of COVID-19 and helped them to understand how to live positively through the pandemic. Immunodeficiency UK advocated guidance and clarification on shielding, and made statements on vaccination and access to COVID therapies, which other organisations adopted. Immunodeficiency UK provided exceptional support during a challenging time.
The spotlight on the clinically vulnerable brought some positives. Media coverage on the reality of living with an immune deficiency was something that we were able to capitalise on. However, the pandemic meant that while Immunodeficiency UK was in its infancy, the normal activities that a charity would look to for raising funds were not possible. Nonetheless, we had amazing support from a rapidly expanding membership, and people found new and innovative ways to fundraise during lockdown. With reserves that would cover our initial costs, we planned for a negative budget in year one. But thanks to incredible support and fundraising, we improved our financial resilience. This enabled us to undertake even more activities to support our members.
This report outlines in more detail the areas in which Immunodeficiency UK has been able to fulfil its charitable aims. For a new organisation, we have made a fantastic start.
Dr Matthew Buckland Chair of Trustees
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Our achievements at a glance
400+
people were supported through our phone and email helpline service.
1964
information booklets sent to immunology centres and individuals.
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Summer Highlight
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12 monthly e-newsletters and 4 COVID-19 special editions were sent to our members keeping them updated on research, treatments, our activities and fundraising.
We gave practical and emotional support through the COVID-19 pandemic.
We sent out 190 ‘Stand back’ badges.
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mental health webinars held attracting over 100
participants
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Our achievements at a glance
We raised awareness of immunodeficiency and the impact of COVID-19 through people stories and quotes in the media with coverage in The Times, The Telegraph, Evening Standard, The Independent, Daily Mail online, BBC news, local newspapers, and radio.
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Summer Highlight
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We campaigned for access to anti-COVID-19 monoclonal antibody therapies, building alliances with other charities to highlight the needs of people who are immunodeficient or immunocompromised.
We helped fund a clinical psychology service for the immunology clinics at University Hospitals, Birmingham.
We reached 104,000 people through our Facebook page; gained new followers on Twitter bringing the total to 1,643; launched an Instagram account gaining 240 followers.
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Living with immunodeficiency
Jenna's story: about having C7 complement deficiency
My name is Jenna and I have complement C7 deficiency, which makes me susceptible to some types of bacterial infections.
When I was seven, I contracted meningitis. I then became seriously ill again with different strains of meningitis at ages 12 and 15. I received fantastic care from NHS doctors and nurses and, thankfully, made a full recovery. Doctors, however, decided to investigate further after the third episode. I was diagnosed with complement deficiency when I was 17, after about a year and a half of investigation.
At the time, I was focused on catching up with my GCSEs and starting my A-levels, so the diagnosis didn't feel like it was the centre of my life. There were lots of blood tests, but one positive to come from these is that I'm not scared of needles! However, I don't think I really understood what the blood tests might lead to or what doctors were looking for because I'd never heard of primary immune deficiencies. I was a teenager at the time, and I think it was a stressful 18 months for my mum. She was a single parent and didn't have anyone to share the worry with before I was diagnosed.
At the same time, I didn't really understand what complement deficiency was and I still worried about whether and when I might get ill again. When I was diagnosed, I was given lots of information about meningitis but there didn't seem to be any information on complement deficiency that was accessible to patients.
I last became ill at university when I was 19, but I made a full recovery. I had to take time out of university and make special arrangements to catch up with my studies, but I was well supported by the staff. Thankfully, I have remained well since then. I became a teacher and I now work in the charity sector.
I think I had a mixture of emotions following my diagnosis. I was prescribed prophylactic penicillin but, as a teenager, I didn't want to feel different.
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Living with immunodeficiency
I am lucky in that my complement deficiency has not impacted on my adult life or my ability to work. However, the COVID-19 pandemic has made me feel more anxious about becoming ill again. Because complement deficiency is rare, I really struggled to find information at the start of the pandemic about the level of risk and whether I needed to shield.
It has been hard to get information from my GPs because they do not always have specialist knowledge. In the past, this put me off asking them questions. I used to have annual appointments at an immunology clinic but was discharged because I have been well for over 10 years now.
PID UK, now Immunodeficiency UK, has helped me enormously. I came across their website when I was searching for information at the start of the pandemic. I was so excited when I saw that they had published information about complement deficiency. Finally, I understand what complement deficiency is! Having this information has given me the confidence to ask my GP questions.
I would advise someone at the start of their journey not to worry about asking questions. It's important to understand your condition properly. Although I'm really grateful for the care I received from the immunology clinic, I found that it was still difficult to get patient-friendly information from them. Now I think I would be less afraid of asking questions.
Sharing experiences
When living with or caring for a person with a primary or secondary immunodeficiency, sharing experiences can be a lifeline. We know that at diagnosis, it is common for people to struggle to come to terms with living with a lifelong condition and its implications. Thanks to our wonderful contributors, we created three new people stories giving a first-person perspective of living with the conditions adenosine deaminase (ADA) deficiency, hypogammaglobulinemia (low antibody levels) and secondary immunodeficiency.
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Omer and parents Paul with his grandchildren Jo
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Living with immunodeficiency
Eirini and Hector’s story: about having XLA
Hi, my name is Eirini. I am Hector’s mum. Hector is six years old and has X-linked agammaglobulinemia (XLA). Hector had his first ear infection at the age of six months. We spent Christmas Day in the A&E department.
From then on, Hector suffered regular ear infections. We enrolled him at a nursery when he was one, but Hector was poorly so often, after a couple of months, we decided to employ a nanny instead. When Hector was two, he was diagnosed with glue ear and had grommets inserted in his ears. We felt optimistic that this would solve it. However, soon after, Hector started coughing. He coughed, repeatedly, every night for months.
We visited the GP and the A&E department multiple times but got nowhere. Hector then got pneumonia. We felt helpless. He was prescribed mild antibiotics, which seemed to work for a while, but very soon another chest infection came. This is when we decided to go private.
We visited a paediatrician; extensive blood tests were carried out. The blood tests revealed Hector had exceptionally low immunoglobulin (antibody) levels, so we were referred to a private immunologist. He diagnosed XLA disease.
XLA disease has had an impact on our mental health. Prior to the diagnosis, we kept blaming ourselves every time Hector got ill. As a parent, it is a constant worry and stress. The disease has also had an impact on our social life and work. We had to take time off work for hospital visits and stays. We missed birthdays, parties and holidays.
Life is more settled now. We have a great routine. My husband and I were trained to give Hector his immunoglobulin transfusions at home. This has brought valuable independence. Hector has subcutaneous transfusions every two weeks. We use this time to relax and watch movies together. We are also more prepared. We always have antibacterial gels/wipes with us when we leave the house, and we have a great handwashing routine. As a family, we have far fewer colds now.
On one hand, the diagnosis was a relief. Finally, there was a reason why Hector was poorly so often. It made sense. On the other hand, we knew XLA is a serious disease with no cure. It was a lot to take in. As a mum, I felt guilty because, unbeknown to me, I was a carrier of this disease.
'The Immunodeficiency UK booklets are brilliant for passing on to teachers, nannies, and other carers. The booklets give a clear explanation of each PID condition and are a valuable resource'.
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Supporting the community through our helpline services
The demand for our online and telephone helpline services remained high. In this period, we received 402 new enquiries (compared with 370 in the previous reporting year). A large proportion of queries were related to COVID19, and we were there as a listening ear and a provider of trusted information, in addition to dealing with issues relating to diagnosis, access to treatments and care, benefit entitlement and employment.
‘The monthly newsletter is excellent and as my sole source of information, very much appreciated’
402
Number of new enquiries
24
Number of recontact enquiries
473 Emails sent
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Phone and email
Phone only
40
Support offered 55
200
Enquiry
150 method
Professional
35
100
Email
50 309
Enquirer
0
Family member/patient
365
Booklets sentEmotional Support Diagnosis TreatmentWork and lifestyle advice Signposting
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from helpline user
Thank you so, so, much for your advice and for sending the information so quickly. Just your email alone will help to indicate to my workplace that this situation is far from over. I do feel more supported already.
COVID-19 related enquiries
COVID-19 Vaccine / Vaccine Response
Access to COVID-19 treatments/PCR tests
COVID-19 research studies and access to clinical trials
0 25 50 75
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Supporting the immunodeficiency community
Over the last year, our work focused on six areas:
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supporting the community through authoritative information published on our website, in printed booklets and e-newsletters
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giving practical and emotional support through our email and telephone helpline service our continued response to the COVID-19 pandemic
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supporting better mental health
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raising awareness of immunodeficiency and the impact of COVID-19 through human interest stories
campaigning and advocating on behalf of individuals and families affected by immunodeficiency.
Supporting the community through authoritative information
Our website and information booklets
During this period, our website and suite of booklets were updated and rebranded to reflect our new identity as Immunodeficiency UK. In addition to constantly updating information on COVID-19 (covered on page 17), we wrote new website content on practical tips for working with your GP, the effects of ageing on the immune system and tips for getting the most out of remote consultations. The latter was written because many people in our community were unable to have face-to-face contact with their medical team owing to COVID-19.
I'd just like to say a HUGE thanks for the incredibly helpful info on the site. My partner's been struggling for 5 years now (she's 25) with an on-and-off disorder that repeated hospitalisations haven't been able to identify and diagnose, and we've been left with the feeling that the myriad symptoms (repeated infections/chronic fatigue/aching limbs etc) are always being treated separately and superficially, rather than sourcing the underlying cause of it all. It's super reassuring to see similar reports and receive advice on how to help direct doctors towards PID/SIDs, as it seems a losing battle sometimes."
We also started to design a new website with improved functionality. This project, unfortunately, had to take a back seat as staff concentrated on supporting and advocating for the immunodeficiency community through the worst of the COVID-19 pandemic.
Aware that people with immunodeficiency find it difficult to access life insurance, we added to our portfolio of 39 information booklets by launching a new title on this topic.
We distributed 112 of our booklets directly to patients, supporting them at diagnosis or during their treatment pathway, and we continued to make our booklets available to immunology centres via an on-demand ordering service. During the period, we provided immunology centres with 1,852 booklets.
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Supporting the immunodeficiency community
Our e-newsletters
Our communications are greatly valued as a source of support and trusted information. We sent out 12 monthly e-newsletters, featuring health information, research updates, community news and fundraising. On average, 52% of subscribers who received our e-newsletters opened them (range 50–60%) and the click-through rate averaged 28.8% (range 12–40%).
52% open rate 28.8% click-through rate
Supporting the development of patient friendly information
Immunodeficiency UK contributed £500 towards the publication of a booklet on thymus transplantation as a treatment for the rare immunodeficiency Complete DiGeorge syndrome. The booklet, developed by Evey Howley, Immunology Clinical Nurse Specialist, who leads nursing care for thymus transplantation at Great Ormond Street Hospital, aims to communicate complex medical information in a meaningful way, so that families feel empowered and confident when giving informed consent for their child’s thymus transplant.
The support from Immunodeficiency UK has been fundamental to completing the patient information project and has allowed me to reach many families, internationally spread. Our aim has been to develop a simple, consistent information resource bespoke to the thymus transplantation families, which we hope will help ease the burden when families begin this challenging treatment journey with their child.
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Supporting the immunodeficiency community
Campaigning and advocating on behalf of individuals and families affected by immunodeficiency
Making the voice of patients heard
During this period, Immunodeficiency UK had representation on NHS Scotland’s National Plasma Products Expert Advisory Group; the Prion Surveillance Study working group; the Scottish Parliament Cross-Party Group on Rare, Genetic and Undiagnosed Conditions; Public Health England’s Newborn Screening for SCID Pilot Oversight Group and the United Kingdom Primary Immunodeficiency Network (UKPIN) ‘COVID infection in patients with antibody deficiency’ (COV-AD) study – part of a portfolio of national studies examining the immune responses in patients considered at high risk of COVID-19.
Responding to the shortage of immunoglobulin
The COVID-19 pandemic resulted in a shortage of immunoglobulin, an essential medicine that helps provide people who cannot make antibodies with protection against infection. We highlighted the impact of the shortage on affected patients through meetings with the NHS Commercial Medicines Unit (CMU), and encouraged the NHS to create bespoke communications to keep our community informed. In addition to meetings concerning immunoglobulin procurement, we responded to the NHS consultation on immunoglobulin commissioning and the demand management plan to be implemented in times of shortage.
We provided extensive information to Genetic Alliance UK for the Human Fertilisation and Embryology Authority (HFEA) to support an application to license PGT-M (previously known as preimplantation genetic diagnosis) for CVID8 (caused by mutations in the LRBA gene). The application was successful.
Raising awareness of immunodeficiency and the issues faced by those affected
For World Primary Immunodeficiency Week, we developed and made available on our YouTube channel a video giving patient testimony on the importance of early diagnosis of primary immunodeficiencies. Posting the video on social media gave us:
reach c3,300 people
395 post clicks
221 reactions
We worked with the NHS Blood and Transplant communication team to highlight the importance of plasma donation in the UK. We ran a social media campaign and supplied case studies and quotes, which appeared in press releases.
We also ran social media campaigns during International Plasma Awareness Week, World Antimicrobial Awareness Week and Mental Health Awareness Week.
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Our continued response to the COVID-19 pandemic
Providing invaluable support in unprecedented times
The COVID-19 pandemic continued to dominate our work during this reporting period. Our priority was to be there for members of our community and their families. Many people with weakened immune systems were shielding and leading very limited lives. In spite of receiving two doses of the COVID-19 vaccine, some people had low or no protection against the virus.
We posted trusted information on our website and published special COVID-19 editions of our newsletter. We called for access to anti-COVID-19 therapies, supported the community through our helpline (we received 137 enquiries related to COVID-19), hosted mental health webinars and issued ‘Stand Back’ badges that acted as a reminder for other people to maintain social distancing.
We frequently updated our website in response to changes in government guidance brought about by the threat posed by different COVID-19 variants. For example, we provided authoritative information on:
In all cases, we endeavoured to filter the information coming from government, the JCVI and the NHS, to tailor it to the immunodeficiency community and present it in a more reader-friendly format.
Our special edition newsletters
We produced four special editions of our newsletter, to keep our members up to date with information about COVID-19.
Thank you so much for your timely and very welcome Special Edition Newsletter, giving information regarding the fourth dose of vaccine and how to access it. My fourth dose will be due shortly, and to date, I have heard nothing about it.
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Our continued response to the COVID-19 pandemic
Through our helpline, we were hearing of people who were having to choose between protecting their livelihoods and protecting their lives. As restrictions eased, there was still little understanding from employers about the risk that COVID-19 posed to some members of our community. In response, we produced an online guide for employers and work colleagues to help people with immunodeficiency return to work after shielding, and provided information for those clinically vulnerable to support their transition back to the workplace. Working in collaboration with 24 other charities representing clinically extremely vulnerable people, we made available a letter that individuals could download from our website and share with their employers.
Kerry's story
"The COVID-19 pandemic came as a real shock to me. As a person who takes immunosuppressant medication, I felt more vulnerable than I had ever felt before. I shielded at home with my daughter for 18 months and then tentatively started going out after that.
I found the Immunodeficiency UK team wonderful and supportive, and the regular COVID-19 guidance updates posted on their website were invaluable. I greatly appreciated the advice about talking to your employer about working from home and the letters they provided to support my case. This was at a time when laws and regulations were in flux owing to the impact of COVID. The webinars they organised were great and participation was so helpful.
I want to say a huge “thank you” to Immunodeficiency UK. You kept me going and sane at one of the most difficult periods in my life."
Immunodeficiency UK collaborated with the British Society for Immunology and the UK Primary Immunodeficiency Network (UKPIN; the professional body for immunologists, nurses and healthcare/academic scientists), to host a webinar to help people better understand how effective COVID-19 vaccines are in people with weakened immune systems. Based on enquiries made to our helpline, we provided a list of the most frequently asked questions that our community would value answers to. Margaret, a member of our Patient Representative Panel, talked of her experience of living with COVID-19. The webinar attracted over 460 participants.
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Our continued response to the COVID-19 pandemic
Advocacy and campaigning for access to anti-COVID-19 therapies
We campaigned for access to anti-COVID-19 monoclonal antibody therapies as a vital element of providing protection against COVID-19 for people with weakened immune systems who are unable to mount a full vaccination response due to their underlying condition. A letter from Immunodeficiency UK sent to The Times was co-signed by 19 other signatories and featured in the printed edition of the newspaper dated 11 August 2021.
As another Mab therapy was developed showing greater efficacy against the emerging COVID-19 variants, such as Omicron, we continued to press the Medicines and Healthcare products Regulatory Agency (MHRA) for speedy approval, through letters and social media campaigns, such as our ‘Do I not matter?’ video campaign. This campaign highlighted the difference that Mab therapy would make to people’s lives in enabling them to re-enter society safely, and emphasised the disparity of access in the UK compared with over 23 other countries where the therapy was already available. We provided template letters so that our community could lobby their MPs for access to this Mab therapy and for continued access to free PCR and lateral flow tests.
Congratulations on getting the approval for the Regeneron Mab treatment finally approved. Your letter to The Times seemed to give it the final push that it needed to get it off someone’s desk and into the out-tray! It was very good news indeed! Thank you for all the work you have done in pursuing this!
From Mark, whose daughter has CVID
With thanks to Lord Mendelsohn, Co-Chair of the All-Party Parliamentary Group on Vulnerable Groups to Pandemics, and his parliamentary secretariat, we were able to ask questions in the House of Lords about the government’s plans for high-risk groups and raise awareness of the problems faced by our community in accessing vaccinations and anti-COVID-19 Mabs.
We presented evidence of the pandemic’s impact on patients at the All-Party Parliamentary Group on Vulnerable Groups to Pandemics, with coverage in the British Medical Journal.
Immunodeficiency UK was a member of the Shielding and High-Risk Coalition Group, meeting regularly with the vaccine minister and NHS representatives to highlight the needs of high-risk groups.
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Our continued response to the COVID-19 pandemic
Raising awareness of the impact of COVID-19 on our community
Through our public relations work, we raised awareness of the situation of people with immunodeficiency living with the continued threat of COVID-19, using newspapers, radio and social media to make sure their voice was heard. Articles appeared in The Telegraph, the Evening Standard, the Daily Mail and the Independent newspapers, and on Upday UK, one of Europe’s biggest news apps.
Margaret and Hannah, members of our Patient Representative Panel who have the primary immunodeficiency CVID, pictured below, shared their experiences on the BBC News website, in the article ‘Covid-19: “For us it’s not freedom day, is it?” (6 July 2021).
‘Thank you for getting the stories on to BBC News yesterday. I’m sure they would have come as a complete surprise to most folk.’ Lindsay, who has an immunodeficiency
Ben's story
Ben is 46 and has the primary immunodeficiency condition CVID. Ben says: ‘The pandemic has been brutal and for the first time in the 33 years since diagnosis I felt a big distance from society, ignored by government and finding the need for a whole new set of rules to live by to stay safe.
Immunodeficiency UK has been enormously supportive, doing all they can to provide the best available information and to campaign for really important changes to the approach from government. It’s good to feel there is a group of people that’s got our back, in addition to the fantastic medical staff. Thank you, Immunodeficiency UK!’
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Our continued response to the COVID-19 pandemic
Understanding the impact of COVID-19 on the frequency and type of patient–doctor consultations
National restrictions, resulting from the COVID-19 pandemic, caused many patient–doctor interactions to move from face-to-face to remote consultations via telephone, video or email.
We conducted a survey to understand how COVID-19 was impacting patient-doctor consultations.
Through a survey, we explored the experiences of our community, the support they were given, their opinions on this change and how it had affected their healthcare. We received 117 responses. In addition to producing a full report of the findings, which we shared with medical professionals, we used the feedback to develop top tips for patients and recommended good practice for medical teams to adopt when offering these types of consultations to patients.
Thank you so much for sharing the results of your survey relating to remote consultations.
It was so useful for me to be able to present some of the findings from your survey at UKPIN in 2022, in an oral presentation about the changes to outpatient consultations in immunodeficiency clinics.
Dr Claire Bethune, Consultant Immunologist, Plymouth Hospital Trust, said:
Presenting the views of the patients that have been affected by the move away from face-to-face clinics, alongside the data from the Quality in Primary Immunodeficiency Services (QPIDS) census highlighting the scale of the changes, helped to trigger a useful discussion at the meeting.
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Supporting better mental health
The continuing threat of COVID-19
The serious health risk of COVID-19 to people with immunodeficiency or those who are immunocompromised remained throughout this reporting period. The COVID-19 vaccination programme thankfully began to reduce hospitalisation and mortality rates, but it was only in December 2021 that the safety net of access to antiviral therapies and monoclonal antibody therapies was made available to those at the highest risk who tested positive for COVID-19.
Through our helpline services, we heard first-hand that many people in our community were feeling isolated, anxious and depressed, were continuing to shield and living very restrictive lives. One day people were being told that they were classed as being extremely clinically vulnerable and the next day, not. The full lifting of restrictions with the message of ‘Freedom Day’ did not resonate within the community. As the guidance changed, people reported feeling ‘left behind’, more anxious, angry and frustrated.
What we did to provide support
Knowing that the threat of COVID-19 was having a big impact on mental health and wellbeing, we held two ‘Looking after your wellbeing’ webinars, covering topics to help with managing anxiety and uncertainty. These were delivered by Dr Mari Campbell, Clinical Psychologist at the Royal Free London NHS Foundation Trust. Over 50 people attended each webinar. The sessions gave tips on simple routines and techniques that could help, and these were made available on our website, alongside the presentations.
Of our survey respondents:
88%
found our webinar useful or very useful
82%
found our webinar left them well-equipped to handle stress
94%
felt our webinar left them feeling positive or very positive
Thank you very much for enabling and organising the wellbeing webinar. It’s such a much-needed offer to us during the pandemic, especially now, when many are tired, groups of people are stressed and angry and repercussions can be felt in the population. I was also moved by the resonance amongst the listeners last week.
It was really helpful. Lots of great tips. Also good to hear some other people's experiences. Makes you feel less alone.
One of the most useful things was hearing from other people that they are feeling what I am feeling - the anger, the frustration, the feeling of being abandoned by the Government, and the difficulties from not meeting family members and them not fully understanding why.
22
Helping fund an Immunology Psychology service at University Hospitals, Birmingham
Being diagnosed and living with a lifelong chronic condition takes both a physical and mental toll. As part of a multi-charity funding initiative recognising the need for tailored psychological support for people affected by immunodeficiency, we gave £5,000 this year to support the employment of a clinical psychologist for immunology patients across Heartlands Hospital and Queen Elizabeth Hospital Birmingham. The service began in August 2021, with the appointment of Dr Nicola Wilson, and will run for three years. The focus of therapeutic work to date has been varied, including adjustment to diagnosis, low mood and anxiety about health/future/mortality, emotional difficulties related to the impact of health on roles and responsibilities, and fatigue.
Dr Aarn Huissoon, Clinical Service Lead at Birmingham Heartlands Hospital
The first 10 months of the pilot Immunology Clinical Psychology Service provided by Dr Nicola Wilson has had an immediate impact on our patients and the clinical team. The nurses and doctors are more attuned to our patients’ concerns and needs, and feel more confident discussing these issues with the patients and at MDT meetings. From their own feedback, individual patients are clearly benefitting from their sessions. Formal reviews of outcomes over the next 2 years will help to support the case for continuing this service beyond the pilot period.
Our plans for the next year
What do we plan to do next year?
We want to build on our first year of operation by:
-
extending our patient support by making hardship grants available to members in need, continuing to campaign and advocate on issues affecting our community expanding our range of leaflets to cover more topics
-
hosting more mental health webinars and providing more tailored mental health support launching a new website
-
conducting surveys to learn more about the continuing impact of COVID-19 on our
-
community, their experience of hospital services and the support needs of patients to inform our work
-
recruiting more trustees who are directly or indirectly affected by an immunodeficiency; we need a larger board of trustees to facilitate succession planning
-
broadening our income streams to include fundraising from trusts and foundations; we will work with our community to define what needs to be done and to make the case for
-
funding.
23
Our incredible fundraisers
Yorkshire Three Peaks Challenge – in memory of Paul
In March 2021, Phil lost his friend Paul Ash, affectionately known as Pash. He was the heart and soul of every party, had an infectious laugh, and despite his struggles with his immunodeficiency he was always the guy to lift up the spirits of those around him. Paul was friend to many but also a son, brother, grandson, uncle and boyfriend.
So, In August 2021, Phil along with a large group of Paul’s friends hiked the challenging 25-mile Yorkshire Three Peaks route to raise funds for Immunodeficiency UK in Paul’s memory. The group raised a fantastic £6,825 for our work.
Phil said, “He left behind a large group of friends who are desperate to honour him and show what he meant to us, and it seemed only right to raise some money in the process for a charity he had worked closely with and advocated for in the past.”
£6,825 was raised in memory of Paul
24
Our incredible fundraisers
Chelsea’s story – the Great South Run
Chelsea Kellett ran the 10-mile Great South Run for Immunodeficiency UK after being introduced to the charity by her good friend Nigel.
“I met a gentleman 15 years ago who became a father figure to me, and the impact he’s had on my life is incredible. I will always be in awe of his strength, patience and positivity. Suffering with immunodeficiency has sadly taken away his ability to do what he loves; teaching PE, and if it wasn’t for him teaching, I’d never have met him. I couldn’t be more grateful that he came in to my life, and grateful for the many life lessons he has taught me. I had signed up to do the Great South Run in October, 2021 and when I approached Nigel to see if there was a charity, I could raise money for, of his choice, he put Immunodeficiency UK forward. I’m doing this for him .”
Chelsea raised a brilliant total of £1,075.
£52,468
was raised through public donations
2 52
Thank you
Thank you to all our members, fundraisers, volunteers, staff, trustees, sponsors and members of our medical and patient representative panel for their continued support. We couldn’t do what we do without you.
www.immunodeficiencyuk.org hello@immunodeficiencyuk.org 0800 987 8986
To make a donation, please go to http://www.immunodeficiencyuk.org/donate
26
REGISTERED CIIARrrY NUMBEIL. 1193166 TrINawlal forthe Perhjd 2•21 kn31 m*ts 2•22 Tth J(kn l.imil¢d Ni8hiingg1¢ IIwR¢ Sty¢ K-I-17 lllQ
C•HtsDts of tht Flwntld Stsm forthe 20 knry 2021 ts31 m1h2o22 PA Reprt•fth¢ TnMes IJKkntE%nl*Eh Report SIBtrrthnt•fFlllwKtsI Atdvllks ¢ Shrtt Notes Finwthl Detslled Slthnxnlof FlatI Atlivili 10
Reportof the TnMtee5 forth¢0 20 211ZI to 31 Mrh2022 The tnLsiets pr¢seni Iheir with thc fmanci21 stsleMen of iht tlwi.iy r(K lh¢ PthiLNI 20 JaNJJy 2021 10 11 MarGh 2022. Tlje In¢¢5 ha odoplul the pTOViO% of A¢¢{mlIng RepodiDB by Chftrilies". Stalement of Rccoinn)ended Prnciice applicabl¢ lo charilies prepthritk8 Ihcil in ac¢orthrKe with the fIrncl41 R9xIn8 Siothrd $ppli¢oblE in thc UK Republic ofbdond (FRS 102) (etT#iivr l JHnwy2019). sTRUC1W GOVERNAi¥CE ANDMAFIAGE1yT Governlr4 ikn¢um¢J)t 'The ch8TLty 1$ controlkd by 11$ Bovemuwdo¢umcnt. tt dttd oftrum CO8111 an utiiNorymied thIlY. REFEIILYCEAND ADMtNISTrATIVE DrrAIiS R¢gl$ttAd Chlty numbEr 119.1166 PO Box l?615 Col¢hesler C07 SAN Thtell Ms11 A BM¢¢Tr1¢c {arvDinied ?0.1.21) Dr M BucklindTnJsl¢e lonjoinled 20.1.21) Mr5 L L Gugliani fvIBL TnLsiee18PPOll)d 2Q.1.21) M% rj Ilammpnd Inp[i1LYI 21.1.22) Ms V D BriM¢-Uhli8(ttpN)inied 21..1.22) Ms J E Slieparrt18t4x)illial 21.3.22) Tud(?rJokni Lilled Ni8lilui8Trlc IIou5¢ 4&48 StrE Epx)m Surrcy KT17 IHQ 23n123 AppnTrv¢d by leT ofthc ts)z of tre¢S on.-..-....................-....-.....-. its bchalfby.. Dr M. BuckLind T1¥t 8t1
Rqrt to theTnstts or In(ktemIne1$ to tr UK I repoil lo tlle chlln.iy InL8lets on my ¢x#mililon ot. the 8ccouDts of UK (the TnJ&) foT Ihe WiDd 20 January 2>] to 31 Mgr¢h 2022. R¢apDNlblllQu •Thl ofwffjrt As ihe clmriry thL81¢¢$ of the Tn1 yw are re¥Ible for the FKepmtioJ) of the #cctsunts in iccwdance with Ihe r¢quirem¥]ILofd Ch11¢$ AGI 2011 Acry l Fepon in fespeci ofmy emminaiion of Ihe Trn's accounL% carried oui w)(kr Sc¢iion 145 ofuie Aci atKi in canyin8 out my emminalion I have followed all a11¢able DiTeCtiO given by Ihe Chan"ty Commis5hon der Section 14SISXb) rJl'th¢ A¢1. I IMv¢ ¢pIC illy exanJiiiulioD. I confum thai nerial MAlk come to my 4ilenlKin in cOD[rI10n with lh¢ exttminiiion 8iVin8 Jne LXUSC to believ¢ in Y m•kni41 aixou]Iliny tLyordsWe not kepl in r¢4x¢l ofthe as ftquirrd by Scdion 130 ofthc A¢L Ihe llccounts (lo Th)1 Kcord wilh those r¢cord%: or Ihe LLcouiJts do not conwly with the appli¢abl¢ reqUits the fonn 4nd ¢(tellI of iC¢¢Xth15 sei out in the Chnriiies (Aceounis R¢p)rtJ) R¢8ukniion5 2fXJ8 other any rawimneni thii the 8LVE D tNe QTXI rairvicw which is r1 L matierc0115tdertd of an indEn¢kl uominaiion. I hDve no concenL and h•ve ¢ome 1[8$ no oiher rniter5 111 con[7 with exwninolion to which Triieniion should drnW IM Tewjrt o prowuMI¢NllDdin8 ofthe nccounts 10 b¢ r¢a¢h¢d. Hazel Day Tu&)r Jolui Limiied Nighiingale Ho 4(A8 Easl Sircel Epsom KI'17 IHQ
StnM ArtlvhleJ forthtr 20 Jwary 2021 t*31 Mwrk2022 unrestr R¢suicieAI To¢81 Donation$and legacies 92249 8201 I.450 IDVtslnxTht in¢om¢ Totsl 91250 8201 I.45] Ctharflablp ardyltie SUPPORT 103.150 19.110 122240 NET INC1)MFIITXPENDUR[J 110.880) (10.StW) (21.789) REcoNaLIATlaN OFFUNDS Tollll funds brou8hi forword 96.550 85.670 15.637 101.107
ShE¢t 3J mtl021 R¢stsieied fund5 Total fund5 nd Noks Debiws CD5h al baDk 3.962 119.041 103.404 15.637 107J(O 15.6J7 123,(X>3 AJii(>urits f4llin8 wilhirh Oll¢ y {21.6%) (21.696) 85,670 15.637 101.307 1DTALASSETS LLSS CURR&¥T LtABItJTIES 85.670 15,637 101107 NET ASSE15 85,670 15.6.17 IOIJ07 FUNDS Unro%triilvd fwidj R¢Jlri¢lLd fid5 85.(>70 101.307 2311123 The fin1]41 slol¢mcnL8 w¢r¢ mYov¢d by thE B(wd of Tne and W115¢a fw isgu¢ on ...........-....-.....................,.... WE $id on its b¢h•ifby'. Dr M. 8u¢kland Tnjswe Pa#e 4
No$ kn tht Smellts forthp Jrriod 20 kn 2021 t+ 31 Mrh 2022 ACCOUP471NG tOLKtLs BASIS OF PREPARING FINANCIAL STATEMEN15 "IhL' fina11 4¢alDentS lif Ihe ihaiily. whiih is 8 wblic ¢tsliiy FILS 10? have becn ryeP dNrdan¥t with the Lkn'iiLs )R1D ITrR% 1021 'AiY(wlinB Retxbrting by CTharilie4.' %toleiJiL'lli Iir RixiMnm¥md¢d tice I)11¢aNC to chllriiic5 [ry4n 'Ir •¢¢oiii)15 in with Ihc l."InHncial RIiKbrtin8 SianilHTd gtylicabk in Ihe IIK and RerblIC of IrdxtLd IFRS In?) {cff¥xlivc l January Ib19)'. I"'inRrKial RLyTrnill8 ¢andHrd 10? 'llJe l.'inwKial ÈnTrlirHbk in lh¢ IIK atKi RqyAJlic ol. IrLIar 8Th1 Lhan"Ii¢s Ail 2011."lThe fhThaNial %tsleThYits h&v¢ b¢¢A ih¢ h1(81 CO Lx>nvenlh(m. '11 linwKial aleIS¢onl fflliion to th¢ Clwi'ty ]y. The prts¢nwiiwl ¢urr¢Ky of ItrKs¢ is (IBP. IILe C1wity i%& pthlic knfit ¢nlity. 'lTh¢ Lhm"iy thkcn a(Ivanla8c of the followin8 disclcbwL' ¢x¢mNioNs in Ihv4 fiTwncial ¥lalem¢nls. as tnniiied by FR% 102 Tr Trinal#l RqM)rtin8 %thndard oN>li¢4ble in Ihc IIK and RiTubliL (Trfirel8NJ': lh¢ ryirrmcnb ofscctson 7 leMe o(Cash Fknbs. INCCIME All InLcMne is in Slalan1 of FinawiDI AL%ivilies L¥Ke the charity h&% ¥Thlili¢m¢ni Iv fthMk¥. il i¥ tffi)hobk Ihlli the llKom¢ will rt£¢ivI and wnNnt Lan be lIablY. LXPLYDfrnRE l.iabTrliii¢% are rn'¢wiy¢d os a5 ther¢ is i k811 iy U)nStAve Ith118giicMI Li¥nmiiiinB th¢ thaiily lo Ihoi L'xp¢NiilUf¢. il ts wd¥•bk. Ihal D Ir•nyfrr of eciJtMbmiL knfJts will in lI¢nI Ind um(iunl ol. th¢ (thliglliion . mi'aswrd rcliably. IMIlluTE. is t{jniL an l¢n cla%iificd 'adin85 IIKry knve alkK"4lrd to xli%'ili¢s on B1sis c(Xtsl¢1t with the OrrLtL. TAXATKA IILC cthariiy exeny frrth tsx on ils rhDn"tsbk aEliiitiC5. FUliD ACCY)UlWtriG lInrned fwM15 w¢d in arrdan¢t thith th¢ dwithk (&1ve$s1 the diseMNbn of tlw tnwrt%. Renth¢d fiJJ& (ffity r¢5tridvJ Thiihin I ciccts of chlrity. Reju110 arix when 4xLIf by the d(mT fuDd% foi F4rtI TtstrIdL [[5. I"urthcw cwanalion ofthe nalwc and fitsKI ts in thr ¢0 Ik fuwKi•l stal¢nKrts. %15 Af¥D (YIIIF]I EYkST.REfiRE%ILJT BU%EFTTS 'Ili¢ ihunly a &.fllJLxL Lunin111 S¢4)l C'onknlxIl yb to the trtnsim sLqKm¢ rt ¢lw¥¢d lo th¢ SthKTh7)i ofFllMncial ACU1 whKh IW r¢kni¢. FlANCIAL IYSIRUIDTS eiikn fina1#1 liahililiu wuty i1L4trvtn- I"ra& artrj othcr Tr. I] within year arbJ1k$t Mr¢
NO t+ tht StrtrTr- fortht 20 2021 31 Mwrh 21122 Fll¥ANCIAL ]NSTrU,MENTS 'I'h()se thal art receivable all¥Y mw¢ thn on¢ Y ow ¢(lItU1¢ a fJnwKin8 ar¢ initially al tair vulu¢1¢%s ITRn5aL'lbLMJ C¢1$d sth(pJ¥iily ul •m()[li5 rtyL%. n¢1 i)firryoirmeni. Cash equiYaleNs L'ash and Losh LXtuival¢mts cash It bk on horf (kM0Th14ki'ts banks aTMI other highly 1¥4uid invements wilh lSinkI mthiuriii of IhTtt mijnths less overth•lls. In Ihe bularKe Shed. iwjk i)v¢rdralls arL' withirb or curTLIA 118biliilL. Trade other cmlil 'I'r&(k' ond cr¥11(11 w¢ Ini11 al Frf¢ •ThJ are th¢rfi sl•id it WnMJrtifATrd c(ksi usin8 ik effe¢iive ini¢rtsl Me ¢ffeei of di$¢TrI18 wttjld be inwn1ll11. in 1¢h ease thry tre Aated al cthl. INVESThIENT TRUSTfFS' RFMUliEPAIKk% AND BE¥EFTTS "IIL'rt WLn' rm? In151. rrmuneralK¥L or oikn tk athj I l Marrh 2022. TrUSTEES' LXPE]¥SES 'nKr¢ wer¢ in¢41. pid th¢ Jxriod eThled.11 Mu¢h 2022. START UPCth15 lrtlth within Chritabk KIiVliits*T¢ UP in reil lo the fLThouon Chaft"ry unMwnlin8 10 £1260. FVNDEILS .Iow 154 vf r¢¢o8lli¥LxI iti finuKiol .11#1 Mot¥h 2022." BIL1 Atnl)cl M¢diE41 L Shcwyby 4.151 950 8201 Pa8e 6
Notej kn th¢ CO1d ftrrtht 20 kn 21121 kn 31 mrh 2022 DEBTOILS: AMOUN75 FAiif4G DUE IIThIIN OWE YE4R Tra<k. &4)tors 1250 2,712 1.962 CREDrro1. AMOUNTS FAIIINC DUE wfiHll¥ (AYE YFAR ¢rediiory 'I110n a1 wciDI s<curity (hhu crulilnr¥ 4.457 1,598 15,641 21.696 MOVFMEI¥T IN FUNDS Nd At20.1.21 in limds Al.11.1.22 (iuKYal fund .550 {10.B¥oi 85,670 lJ(Nikk.ts IlvlpliM TrniniD8 Wilisil¢ 1hy11 i•i8n rLTrinl ul'lN)PI MDILYWI MLyilnl htthlth wch"r Munihty ¢-Kvsldi¢r PalitDI and 8ron 1.412 2.012 415 {5.4.151 415 -1.3.12 8.767 1212 5.454 (2.1441 (.i.(wi 1891 4.081 26.S46 15.617 TOTAL FiINiIS 12.1.096 12I.7N91 101.IU7
No$ th the stten>t- tonlljry rortht 20 kn 2021 kn 31 Mxrch 2022 NL41 movLYN'ni in in oFx)v¢ rt * follow5: lThximin8 RLwurcL ex Mov¥Inl in fwids CiiTrial fund 92.250 (10.i.i.wi (lo.8) lkn)kk 14yLholiryy pnyed IILIpli Ifainin8 11.8191 {25[) 2.012 2.5¢M) 415 {5.415) 15.4.151 l)IBithl Lanyi8n and reprinl orip() nwlLYia1s MLtil#l heMIth weh'r•rs Monihly (k.11¢r 12.(KAI 12.1441 14.5(Kll {2.{8) (2.144) (Y9) 8201 (lo,9) ALFUNDS I1.451 11222401 121.789) 'IthL lunth br(wghi fmvard rL.flLI kn. aLXiwiUla by ilK. l¥imAry ImmwMMk.fKi¢Ky IPII)) IIK Kxlipri pr IriJK' Pe(yli (firIY (penelii l)iwKdLYY LIKI wbLih w¢fe trwfLYr¢d inlu ImmvNKkfiinaKy IIK il ils Liwn LY)lily ¢lTeLlive fftyn IA Aryil 2021. Thiv whth w¢r¢ 41 Ihi dw1¢ knv¢ IiHThifaT¢¢J inlo Ilieir IAvn futhti% wthin lkn>klets- lo ihe ¢as1 ¥1¢5 orrivr diif¢rthi ¢(KKliIilMI.57f]L inr0rnwli Ixx?kkii. PsYL.hol proJc¢l . Fth8 4pxI. of A owlirflwity Iniiwiiv¢. f(r • rlilliul Jwhiik)8y w111 fot iiL¥rtSDtitThbnB the cliiic * De1 ofimmwlogy. Bimimglwm H¢•nlwwh IlryiWI. H¢lplin¢'frninl. Fun0 io tk traini of Y(knILY io mao the InutwAxkficietry UK 1p]i. mthlY ¢-ncwsldia . . the rAthhCl0Q of a nmmthty e-Nk11Ly for Immuthfi¢imry UK lyi . M8r¢h 21172 Tht neIe15 llr¢ of ¢mnnM4Wti(m with men11%hip 11¢ up kn d alxwji ImmuM¥kfKi¢no. nM)knl¥ tsbk. 1h hi8hty seoxc Di8ithl canv1 rqYtt of tP(PPl m¥trnth . •xl TyintrJ8 of I)P] edw•tiThJ•l nthia]s fur * di81kn1 mxtkL"ll8 TA.{ld Pl NILiJthJ Ikxlth . Surqxffj for the <svuy ot iniewityt W.¢[5 m)prnw 01 ]lih otthe Immr1 cthrtmuniry amn8 the cov[tl9[Ac. lienl ¢WMS 8r8nts. forwAiK*I 9nd ptlthi W Bt¥nts
rorthe 20kn•ry 2021 kn 31 Mrh2o12 EMPU)YEE BENETrTT OBUCATKIYS The taol omoynl re¢oBnis¢d as iu the year for to d¢fll)ed ¢OnthUl10ts pensAoD schr¢5 was L3.922. io. Th¢r¢ war relalcd wty c1¢4 31 2022. ¢9
REGTERED CHARTTY NUMBE. 1193166 ]MMUNODEF]C]ENCY UK Un1d FInal Sthnnts fortht Period 20 knu*y 2021 to 31 Mwh 2D22 T10[ J(th> l.imil¢d Nigi)iingalc I1 4fv48 ¥¢ K-I'17 IHQ
Contents Dr Ststejnents fortho 20 2021 to3] 2022 RertOr thp TnL¥tce5 1DdyThIentKT81es Rert StatpmentofRnoDtlal Aedvlllt% Bdance Sknt Notc8 ID tht FJnawl81 StsthnK] De¢ StskmentofFiwlal A¢lh4ttp5 10
IMMUNODEFICIENCY UK Roport ofthe TNtst¢e$ forthe 20 Jonwry 2021 to 31 fvlw¢h 2022 'The tru51ecs prcseiil their report wilh Ihc finuncilll 1¢m¢nts of the charily lor IhL' peiicml 20 J4ny#ry 2021 10 11 Morcli 2022. The trusiees Iv¢ udopled the piY>visioL4 of Accoiyitine and R¢poNing by Ckniilies-. Stalunent ol. Rccolntlldtd Prgciitt opplicoble io ¢hariiieb preporin8 i11L accouiits in JccordArtce willi Ilie finoncial RqM)rlirt8 Standard appliL'al)le ui le UK R4Jubli¢ oltrclaJMI IFRS 102) (etTLYtive l JaJJUY 20191. STRUCTURQGOVERNANCEAND MANAGFMENT GDvcnhlry (kbcument The eharily is conirellcd by 115 8ov¢rnin8 dttwn¢ni. a deal of irusi eonsllftl1 uttincorpTrJaled ¢horily. RekIstedCharfty 1193106 Prfnclpal athS PO 12635 Colche51¢r Ess¢x C07 SAN Tntst¢¢ Ms11 A Bruce'lnL%l¥e laiwoijiled ?0.1.21) Dr M Buckland TnL%iee1liPPI)initd 20.l.21) Mr% L E fJasliaiJi MBE TnL%i¢e Iippoinl¢d2O.1.21) Ms D 14skmmond (appoinied 21.3.L?) b(% V D Bri55c-Uhli8 (appoiThl¢d 21.32) Ms J E Shppard {awKJiJJkd 21.3.22) TudL)r JohJJ Lzy]iied Nig]ilin8ale House 48 Easl StrL% Ep50m Suffcy KT17 IHQ 2311123 Appmved by nrdcrof thc knard o1.tru515 on.......................................... and si8nLd on its IbalbY.' Dr M. Buckland Tru51ee P$8e I
Ex•mlJth Reprtts the Thfee5 or lJnmunDdeficlew UK cxami¢S to the Inlet5 of ImnwNidetlelÈD¢y UK I rq)ort lo IIK cligrily tru51ee5 oll iny exaJniii•lion ol- thr accounts of lJi)munodeficiaicy UK IilJ¢ -rn1) ftsr Ihe 1] 20Joniillry 2021 to 31 March 2022. Resl1bsI1 Iwls of ihe charity Iruslee5 of the Trnsl you ar¥ r<%yonsible for the preporntion of th¢ a¢¢ounts in a¢¢ordance wilh the requirenjetils oftsje Charities A¢1 2011 ('thc AFI). I rq)ort in respect ofn)y oxminTrlion of the T[,5 u¢¢ounts ¢&Ied out under Seciion 145 of thL A¢1 in ¢ill8 Oilt my examit141ioii I have folloKYed all applicable DLf¢¢iioiisgiven by Uie Ckarity Con)mi%8ion under Serli] 145151(b) ol'th¢ Aci. lThIeN]entcX1mi1 statement I hllvc winplcicd my exaniinolion. l ¢tsAfinn that matcrial inalle Iwve com¢ lo my atlejilion in Lollnwtion willi the exfjminaiion gtving m¢ ¢ous¢10 beli¢ve Ihoi in nny material respect.. a¥eouiilin¥ iLo¥d% ivere Th)tkepl in 5cl ofthv Tn1 as r¢quited by SLKlion 130 ollhc ACL or Iljt hceo)this do noi sttord iviih lh¢ fecords. (Trr Ili¢ llccounis do J>ol cornply 111] th¢ appliLa¥tle requireJneJJts ty7nceEniThg the lonn ond conle1 of accoLmls set out in ie Charilies (Accounts Repo.) Re8ulotion$ 21X)8 tsther ih4n any requircmenl ihai the accounts give 2 trne 4rL¢J fair vIV ivhich is t)01 a m•i1¢r¢s7der¢ll 05 Ikirl ol'jkn indeptndeni txsmin&iion. I have no tDn¢erns knve corne acros5 no Olher mniiers in conrteelion wilh Uic ekwjinalion lo which otlention should drawji in This ryEI in oidcr io cnable a pro]xr uJJdersiandiD8 01'll)L Ctoullts lo wuched. Hazel Day Tudorjohii Limite Nightingole HOL 4(p48 E&sl Sircei Ep501T] Surrey KI'17 IHQ Pllge 2
Ststemontof Acll%ll5¢J rorthe 20 2021 to 31 Mwrh 2022 Unt¢Stsicied nd R¢sttided funds Total fund5 Nol¢s r4COME Af4D ENDOIYhfEK15 FROM th)wdUonsavd lega¢i¢s 92249 8201 I.450 lrtvestnl Éncome 91250 8201 100.451 LXPENDtruREON Ch#rftaN¢a¢dvilieJ SUPPORT 101.130 19.110 122240 r4ETINCOMFJ(EXPUIDifuR {10,880} (10,909) (21.789) Tolal lund8 brouglii fojward 96.550 26.546 123.(W6 iiyrAL FUNDS CARRIED FORIVARD 85.670 15.637 101107 lThc ftoics ff)nD parf of1hc fmaftci3] stslemcnts
IMMuf4oDEFICIFNCY UK Btdunce ShEct 31 Mh 2022 UtutSUi¢led tiij R¢Sle1¢d fimds Tolal runds Noles CURREf4T ASS Deblots C$] At bank -1,962 IU3.404 3.962 119.041 15.637 107.366 15.637 123.IM)3 Anjounls falling due witliin oJJe year 121,696) (21.696) NET CURRENT ASSETS 85.670 IS.6.37 101.307 T(wfAL ASSETS LESS CURRENT 85,670 15.637 101.307 IYET ASSETS 85,670 15.637 11)IJ07 UnRstsicted funds RL7lTicid funds 85.670 15,637 TOTAL FUNDS 101,307 'Ilie fm3nrial slftlcm¢nL% I%.c approvd by the Board ol. I'nLsIs alld 8uttioris¢d fur i&8U¢ Oli ivcrr 3i8EJcd on ilE b¢hallby'. 2311123 Dr M. Bu¢kland TnLst¢e 11i¢nole5 (]D ofthes¢ fm8nciaJ atementS Pa1¢ 4
IMMUNODEFlCtFJ¥CY UK the F]nthl Slxtenw ri0 20 2021 ts 31 M¢h 2022 ACCOUlqTiNC KILICILS BASIS OF PREPARf4G IHE FINANCIAL STAIEMEN15 'I'he 1111gn¢ial 51al¢inLnls (If IliL Lharily. whjih a publiL b¢n¢fil ¢nlily ut)d¢T IO• Imve been prLp#red in acrdniC with Ihi LTharillL% %()Rl' 11.-R% IQ21 'AccounlinB and RLwilins by CTraJiiiL'%'. RccoThmLndcd Prllclicc applicable to charitlL¥ preparing ttK'ir arcovnl% in Ordanc¢ with Ihc I'inancial Rcporling -Siandaid applicable lli Ihe UK 8nd RLI)ubliL ()r Ireland (FR% 10?) {effLxlive l January !019)'. Fimncisl RLll)(Jrtin¥ latldard 10? '1IJL l.-indiJLial EiLV()ll¥ng %tandaid alICable in th¢ IIK an(1 kcpublic ol. trLldnd' and the Lhan"li¢s A¢1 2011.'The finartci81 SllllLnents IN%v¢ ptrpare(l under Ihl hislorical c051 Lonveniion. Ibcse ljnonciol sl8i¢JNmis¢onthin it)fomiali(KJ in rclation kn Ihe Lhan'ty only. The pr¢wl8lion81 ru[ncY of Ih¢sc flnancial sialemenis is CIHP. The Chllrity i4 # public 1)er11 cnlity. 'lTh< rharily hus laken advan198e uf thL rolltswn¥ disLIuswe ¥xemMions in pr¢pati]ig thes¢ rjnanciul 51alemLmts, permillLd by l-.RS 102.lhe l.inanLial RLyortlft8 Siandard appliLablL in Ihe IJK Ènd RLpubliL ul-lreland,: the iwuitrm¢nls of Section 7 Sthicmem ofcthsh Flows. INC(IME All IllLVltie js Irr()Bnixd in ihe Sialemenl of 1--inatla1 ALiiviiies onte the Lhlrity ]ws ¥nIiil¢l lu Ihe fun&%", il is ptDbabl¢ Ihai the incoine will rLYiivL.d atjd the amouni Lao be lI81}ly. EXPEYDllilRE 1.jabililie Jte rwised as L¥nditUre 85 S4x)n djere is a lebial i)r Lonsinjilive Éknligalii)n fOUUT)illiiJg lh¢ charsiy to Ihat L¥pcndiluT¢. il is probabli thai a transfer vl. CLonumiL' bcnclits wjll bc requJT¥Trd in _%eiiI¢nnI lh¢ J>U11l ol-Ih¢ nbligalion cwj bc mLasured ts.liably Ipet)d]lrL, IS Rcci>iiJ)led for on 8n u¢¢ruals l¥i.%is IJiL4 cla55ified uThJLY headlji% thal aggnylc 411 relalcd lo thi colc80ry. II'IILfL COS15 CS¢)lli)I IK, IJJrLYily 3IWibui Io lIcUlar hrMs. IhLy have been ull(Kal¢d to &¢livilits on a b8s.is consisiLni with IhL Ik, uf res(we5. TAXAIIIThY The ch8riiy is txtmpt frffln tax on ils chaiitable acliviiies. FUND ACCDUNIIYG lJnT¢511irid furKlscan b¢ used in aLrordun¢e with the thlabl< IA)jecliv¢5 al th¢ th"s¢tIon nf Klntil%1 fLLn(b Lati otily be u1 for PlIrtLcular [LrIctL within IhL objL15 of Iht cl]an"iy. Re¥liidion5 arise whejj 4)eLified by ¢he d10[ nt M'bLn fwids are for restriLied purrffj5L%. l.urther cxplanaiion of1. nanjre snd wtptJ%c nf¢8ch fwKI 1$ iTKlu(kd in Ihe n(Me5 10 Ihc til¢&1 %thitllKXMS. PEYSI(IN {75 AI%D OIIIER P(AST.RETIREMLIT BENEFTtS '1IIL Lliarsiy a deliJiLYi wnlnl)iilJ(N) iieJJ4JoJJ 5LIKJnL'. LoiLtri11I1)1S payable li) WLSiffl) 5¢1)EJn¢ c chllrgcd lo thc tLMLy11 of FiJJanLial Aclil"i¢i¢5 in th¢ io 'hICh lte. FtYANC14L tYSTRUML15 I"inarKMI in%tDThts clas5ifLuI and [MInIe fw. aL4x)8 lo th¢ 5wlYAarLC¢ of lh¢ Lntr8l1l ¥jruLrnLnl. iihLT financ]31 &%4eL¥. financkwl liabililiL% or equiry ilL¥iruinLLs- I'rs(k s1 IklK(Ks "rra(k oil]ei <(}15 Ihal rgible within (w year aThl do nc?I ci>JkslihJle a firJarKiiw ore rec(ynlL¥J ui the und1(KIn1ed WIMIWII EXpted T1VL. nel of aiiv iiniMinJ]eni. Pa8¢ 5 nliw¢d...
Notey b) the Flnwlal StstrMe- contin
fortht 20 2021 b) 31 Mwrh 2022
ACCOUliTING POUCIES.
FINANCIAL INSTRUMENrs
'IILI)sL' Iljal llrL' reLeivabl¢ Hniy iiii)T¢ thaJ] year or conslilule a tiiitiiicing irJnsarlioR rccordcd ini12olly ai lair
Val ILSS lJxnsaLIithi Ic)51& 4llid 5uligU11lY ?1 aiii1)rt15L'J LUStS'. EJL'I ufiiniidimiL'lhl.
Cash and cash equivaleni%
Cdth tnd Lash E4uiv4l¢nls COlnWL¥e cash al bGnk nd on W
IWMUNODEFICIFI4CY UK Notes ty the Ststsme- con11n forthc 20 January 2021 to 31 Mwrh 2022 DEBTOILS: AMOUN15 FALLINC DUE I*TfHIN ONE YR Trdd¢ d¥btors Qiher dcmor 1250 2,712 1.962 CREDrroKs: AMOUN75 FAtItNG DUE ThYE YEAR 'rtH£k CT¢dilor5 .1 allon and s18] smriiy (MI) creditor 4.457 1.598 15.1)41 21,696 MovFMENf IN FUNDS NL movement iii fun& AI20.1.21 Ai31122 UnRs¢thted Icr81 tilnd 9(1.550 I IU,8110) 85.C)70 Restskted lJ(Kthlc15 Ilelpline TTainin8 iYLbsile Di¥i181 lan1]Bn and rLVrilli of IK)PI ILYial% M¢111 h1th wcbirws Nqvnihly c-llCW51etlcr PaiiLmi events #Ni 5iaiiKvi grants 1,412 2.012 415 15.415) 415 8.767 12,Q68) 12,1441 1,164 -1.110 5.454 4.081 89} 26.546 (lo.9}) TufAL FUNDS 12_1.1196 {21.7891 101107 Pa8L 7
tMMUNODEFKI&¥CY UK
Notry b) the ststVrn- ¢n1
ftsr 20 knuaTY 2021 to 31 M2Trh 2022
MOI'EhlENf IN FUNDS_ co]IlThKyl
Nd mov¢nky)i in fund8. inrlu(knl irb Ihc alK)Yc arc 85 lollows..
ljicoining
rL'5011fLLS
Res()U]Les
L'xExtMiLd
Mi)v¢imeni
IJJ fund$
UAJEslrl¢ted fu
tienctal lund
92.250
110.3.1.10)
{10.880)
Rutiicted fu
I5)kI¢l$
PsyLho108y [ojeCt
IILlplinL' Training
W¢'11C
I)181[ campi8th nnd ttprini ol'lN)PI
1.851
2,500
)50
(1.8191
2.5001
15.751
5.415)
2.012
415
(5.4151
(2,0681
12,1441
{4,5001
1891
(2.(kn81
12.1441
M¢nial heolih M'¢bin4t5
Mc)tithly e-Iiewsl¢iier
Paiieni events 8JMI 8ranls
189)
8201
I10.)9)
TOTAL FIJNDS
100.451
{1222401
(21.7891
limds hrou8hi fotivard llect Ih(L%¢ arruniulal¢d by th¢ I'ritnary Immun(xJ¢licLeiKy II'II)I IIK K'ctioii ot. (ie
PLwpIL IfL)rmerly GenL"iiL Diwrd¢ LIKI th1¢h W¢T¢ Iran¥fLYrcd into ItEJtnuntyJcfiLicrK>' UK wliLll Ll bLKoniL' iLs'
eniiiy etfeclJv¢ friwi IrA Aptil 2021. Those fvnds whicli w¢ i¢suicl¢d al Ihal dale havL trans(red inlo their
Vwti fLtstrlLl funds within lh¢ aLcounl3.
Ddcrftdlon offuTh
BcMJklets- Fut•8 l(> th¢ c(1 of i?Iii)luig )pieS vrriv¢ dilTeriuJl LIMmJiligXLIfjl infOrntiOn IMx)klths.
Psycholo8y prvjeci 5t44M)n. OS Poll of H tmil11
No¢s to th¢ Stst¢m¢nts-ton1ind fortht n(MI 20 2021 to 31 Mwrli 2022 EMPIA)YEE BENETrTfoBIJGAIIONS The lolal amouni rnYognis¢d as ali pense in Ille for pay]TMts jnllde lo dered conlTikniiiou pe>t} s¢hEm¢5 wa5 E3.922. io. Ther¢ wer¥ Jjo r¢lai¢d p)rty traTtsHCIiL% for IhE pcriod cn(kd 31 Marclj 2022. P)g¢ 9
Ilependent ExamineF5 Rert to the Trustees of Immunodeficiency UK Independent examineffs Trport to the tnLSteL¥s of Immunocleficiency UK I repoit to Ilie cliarily tnl¢eS 011 niy e.¥ainiiiation ot" the accounts of Iiiiinunod¢ficieiicy UK (tlie -J"iust) foi" the pci.iod ?0 January 2021 to 31 March 2022. Rosponsibllities and basis of report s Ihe cli<lrity trustees of tlie Trust you arL responsible for tlie pieparatioii of Ilie qcccounls in accordance Ivitli the reqiiiTemeiits of Ilie charitie.s Acl 2011 ('t]Ic Acl). I report in respect of niy ex<1minc2tioii ot" Ihe Tnist's iqccounts carried out under Section 145 of t]ie Acl ¢2nd in carrying oul Ins, exaiiiinatioij I have lolloived all ai)plicable Directioiis given by tlie Charity Conimission under Seclioi) 145(5)(b) ol.the Acl. Independent examinerfs statement l J)ave ¢oinpl¢ted Iny exaiiillialion. I coiifllin Iliat no Iiiatcrial Inatte l)ave coine to Iny atteiilion iii Lonncction 1s.itli tli¢ examination giving Ine Lause to believe thal in £my material respect: accouiiting TLCOI-ds iyere not kepl in respect of the Trusl as requu.ed by Seclioi) 130 of tlie Acl. or tlie accounts clo not iiccorcl Ivith those records. or Ilie aLCOUllts do nol coiiiply M'itli tl)e applicable requirei]]ents canceniing the I'om] ond conteiit of accoill)ts set out in tlie Cliarilies (Accounls and Reporls) Regulalions 2008 oiher Ihqc n an)1 requiremenl llial t]ie accounts give a Inie Llnd rair vieiir Ivhich is not ¢q n)atler considered as part ol'an independent exumination. I have 110 concerns and Iiave coine <qcross no olher m2tlers in coiiiieclion Iiritli tlie eXnIn(lion lo 11,hicli attenlioii should bc draivji iii Iliis report in order to enable a proper under5landing ot" tlie 1ccounLs to be rcached. Hazel Day Tudor Johji Limited Nig]Ilingale HoSe 4648 Easl Street Epsoin SuiTey KI'17 IHQ Dale: .Paoe ?