**Annual Report 2023–24 (Covering period 1 April 2023 – 31 March 2024)**
**40 Orpington Road, Winchmore Hill, London N21 3PG**
**Helpline: 0300 772 7795**
**Annual Report 2023–24**
**1**
## **1**
## **Trustees**
## **Silvia Davey**
Chair from December 2023, Trustee
**Alan Moss** Chair until December 2023, Trustee
**Majid Hashemi FRCS** Medical Chair, Trustee
## **Jayne Fitzgerald**
**Amanda Ladell** Trustee, Head of Patient Support
**Neil Ham** Trustee
**Gavin Nash** Trustee
**Andrew Williams** Trustee
Trustee, Secretary and Treasurer
Alan Moss was Chair until December 2023, and Silvia Davey took on the role of Chair from December 2023.
As incoming Chair, Silvia shared the message below to Achalasia Action’s supporters:
“Our founding Chair, Alan Moss, has had to step down due to unforeseen personal circumstances. I’d like to take this opportunity to thank him for his tireless work over the past four years in setting up and growing Achalasia Action, and in leading us with great diligence, compassion and integrity. As a volunteer-led charity without paid staff, Alan has spent countless hours completing a whole range of governance, operational and administrative tasks. We would not be where we are as a charity were it not for Alan’s leadership and expertise.
As Achalasia Action’s newly appointed Chair, I have very big shoes to fill. But I am committed to rising to the task. I developed achalasia in my late teens and have lived with the condition for many years. I know how painful it is to have food stuck in my oesophagus that just won’t go down, or worse, to be woken up by unbearable chest spasms. I also remember how being misdiagnosed by GPs and experiencing difficulties in accessing the right care and information made me feel unheard and misunderstood.
But I also know how life-changing it is to be surrounded by a supportive community of people who are ready to share their achalasia stories alongside helpful information, tips and tricks. My personal experience of living with this rare condition inspires me to continue strengthening and growing Achalasia Action’s activities, ensuring we continue supporting and positively impacting the lives of all those affected by achalasia.”
**Annual Report 2023–24**
**2**
**2**
## **Volunteers**
Achalasia Action has no paid staff and relies entirely on the hard work and dedication of volunteers.
We would like to thank the kindness of our volunteers this year, for everything they have done to make Achalasia Action’s services and activities possible. In particular we’d like to thank:
**Christine Hollywood Kelly Andrews** Patient Support (Writing Group) Patient Support (Parents of Children with Achalasia) **Jack Eddy** Head of Policy and Campaigning **Lewis Dickinson** Patient Support **James Fitzgerald** (Young People with Achalasia)
**James Fitzgerald** Fundraising Support
We have also recently recruited a social media team consisting of AnnieRose Tate and Ian Tuddenham.
**3**
## **Medical Advisors**
We would also like to thank the kindness of our collaborators from the healthcare profession, who have supported us in our specialist meetings over the past year, and who have helped deliver key achalasia research.
In particular, we’d like to thank our Medical advisory board:
**Sacheen Kumar** Consultant in upper gastrointestinal (GI) surgery
**Anthony Hobson** Consultant GI clinical scientist
**Ahmed Albusoda**
Gastroenterologist
**Melika Kalantari** Pharmacist and achalasia researcher
**Annual Report 2023–24**
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**4**
## **Structure, Governance and Management**
Achalasia Action’s structure, governance and management arrangements remain unchanged having adopted a foundation model constitution of a Charitable Incorporated Organisation on our registration as a charity on 14 January 2020 (number 1187367 in England & Wales). We are the only UKregistered charity specialising in achalasia. We have no paid employees or advisors, and do not occupy dedicated premises.
**5**
## **Objectives and Activities**
Achalasia Action’s charitable objectives remain unchanged, and include:
- To advance education about achalasia and associated conditions.
- To preserve and protect the health of people with achalasia, including their friends and families.
- To encourage and support research into achalasia.
To achieve these objectives, our activities include:
- **Support:** providing a friendly and well-informed community, education and guidance to support those with achalasia and their loved ones.
- **Inform:** raising awareness of the disease amongst patients, their families, the medical profession, policymakers and the wider public.
- **Research:** collaborating with the medical community and encouraging achalasia-related research.
**Annual Report 2023–24**
**4**
## **6**
## **Achievements and Performance**
Achalasia Action’s activities fall under three core pillars: support, inform and research. In the past year, we have achieved several big milestones under each pillar.
## **Support**
## **Achalasia Action website**
Our new Achalasia Action website was launched in August 2023. You can see our new and upgraded look here:
achalasia-action.org.
easily accessed and navigated by patients and their loved ones, and to bring together in one place information on patient support meetings.
The website includes all the information that is in our booklets Achalasia Explained and Living with Achalasia, but we still provide paper copies of these booklets to those who do not have internet access. Our website is widely viewed as a reliable and credible information source on achalasia; for example, the NHS page on z links directly to our website.
Our aim for the website was to ensure that our patient support information could be
Since our website was launched, it has been accessed by 17,283 new users.
New Achalasia Action website homepage
**Annual Report 2023–24**
**5**
## **Patient support meetings**
We also continue providing our core support services, including patient support meetings, patient meetings with healthcare specialists, and individual support sessions via email or the phone. The number of people we support continues to grow.
60 new people with achalasia have contacted us this year for help, either through our website, our helpline, or email.
In total, we have directly supported 342 people with achalasia; to put our reach into context, that equals approximately 5% of all people diagnosed with achalasia in the UK.
For example, in the past year:
## **Other support services**
## **We held two patient meetings with healthcare specialists, attended by**
**150 people:**
- May 2023 - Keeping your Oesophagus as Healthy as Possible
- November 2023 - Achalasia Research Priorities and Patient Q&A
- **We held the following support meetings:** • 13x monthly support meetings attended by a total of 180 people
- 7x meetings for parents of children with achalasia attended by a total of 48 people
- 8x Writing Group meetings attended by a total of 47
We also held several small online meetings for people with specific achalasia problems and experiences who want to talk to others in a similar situation, or prefer a one-to-one or one-to-two meeting.
We also continue to provide information and support to people with achalasia on our social media platforms including Facebook and our recently launched Instagram page. For example, we regularly monitor and provide support on the Achalasia Action Facebook Group, which has grown by over 200 members in the past year, to a total of 715 members.
- 2x Young People (18-35) with achalasia meeting attended by a total of 8 people
**Annual Report 2023–24**
**6**
## **Inform**
## **Rare Disease Day campaign**
Achalasia Action was founded through the support groups that we continue to organise today. Those with achalasia can often experience feelings of isolation, frustration and discouragement when interacting with acquaintances, medical professionals, and even friends and family. We believe that sharing stories and experiences can be a powerful remedy to these problems, and a way to build confidence, wellbeing and knowledge.
We launched our “Shine a light on achalasia” campaign in February 2024, to raise awareness of achalasia and to offer support and community to patients with achalasia in the UK and around the world. Our objective was to build contact and momentum in the run up to Rare Disease Day, to maximise exposure and awareness.
We published and shared nine stories of people with achalasia and their loved ones, which you can read on our website: achalasia-action.org/news-and-blog/.
The stories focused on the impact that finding support, community and understanding had on people with achalasia.
These stories were widely read and shared, including by snooker player Ronnie O’Sullivan and actor Annie-Rose Tate. The stories also helped many people with achalasia feel less alone. For example, one person with achalasia commented: “Thank you for sharing your stories and informing people about the disease! This is really helpful”.
Nine achalasia stories for our Rare Disease Campaign.
**Annual Report 2023–24**
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## **Attendance at the British Society of Paediatric Gastroenterology, Hepatology and Nutrition**
Continuing our efforts to raise awareness of achalasia amongst medical professionals, our trustee Amanda and volunteer Kelly attended the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) 2024 meeting in Bristol.
The meeting gave them a great opportunity to meet many paediatric gastroenterologists and to distribute Achalasia Action literature, as well as information about the Achalasia Action website. Attendees were very interested to hear more about achalasia, especially from the perspective of living with the condition and the problems encountered by patients. After talking to us, one trainee is now very interested in making achalasia a specialism of his!
Kelly at BSPGHAN 2024
## **Achalasia Action’s Prospective Parliamentary Candidates Campaign**
The quality of care that people with achalasia receive is often very poor, with high rates of misdiagnoses, late intervention and inadequate aftercare. We believe that representation within the health system requires increased awareness and activity among policymakers. We are keen to raise the profile of achalasia amongst politicians, to ensure that people with achalasia are included in conversations and decisions on the future of the health and care system.
To achieve this, we have been targeting prospective parliamentary candidates (PPCs) in the run up to the General Election. This has involved providing a briefing, introducing the disease to PPCs, as well as highlighting issues experienced by people with achalasia and key asks for Parliament.
**Annual Report 2023–24**
**8**
## **Research**
Achalasia Action has helped support several research projects over the past year, by shaping the research focus and providing a network of people with achalasia who were willing to take part in the research. Below are two research projects which we supported in the past year.
## **Dr Kalantari’s research on achalasia**
We would like to congratulate Melika Kalantari on completing her PhD research project focused on understanding people’s experiences of living with achalasia. Our medical chair Majid Hashemi was one of Melika’s supervisors, and has noted that it is a rare achievement for a doctorate to focus solely on achalasia. Achalasia Action especially welcomes Melika’s research, which directly helps people with achalasia to live better lives.
Achalasia Action supported Melika to recruit volunteers for her research project, and helped her shape the project. The project aimed to understand the most difficult eating behaviour for people living with achalasia and co-design a workbook to help people with achalasia when eating in a social or unfamiliar setting.
You can read a publication on the research project here:
https://www.frontiersin.org/ articles/10.3389/fmed.2024.1216209/full
## **Management of painful symptoms of achalasia**
Achalasia Action are keen to support projects looking at chest spasms, and how the pain can be managed and treated. Chest spasms are one of the most recurrent themes raised in our patient meetings, and appear to be one of the most difficult symptoms to live with, and to diagnose and treat.
Achalasia Action shaped Stefan Antonowic’s and Solange Bramer’s research looking into chest pains in people with achalasia. Informed by an Achalasia Action survey of 57 people who experienced chest spasms, which identified that chest spasms are common and difficult to manage, the researchers systematically reviewed all the written and published material on achalasia pain. They concluded that there was not much recent or relevant information available on chest spasms and achalasia, nor information on how to treat the pain.
The researchers also recommended the introduction of an international achalasia registry, from which appropriate clinical trials can be performed to expand our understanding of achalasia and chest spasms. We are currently working with the researchers to understand how we can make such a recommendation a reality.
You can read the researchers’ full review here:
https://academic.oup.com/dote/ article/37/5/doae005/7590533?login=false.
**Annual Report 2023–24**
**9**
**7**
## **Donations**
Thanks to all those who have fundraised for us this year!
Our fundraisers have done walks, half marathons, marathons and even boxing matches to raise funds for us.
With special thanks to:
- Bonaventura Pacileo
- Claire Miller
- Gavin Nash
- Kenneth Boyle
- Tracey Bentley
**Annual Report 2023–24**
**10**
**8**
## **Financial Review:**
## **Accounts for the period 1 April 2023 to 31st March 2024 (based on payments and receipts)**
||**Notes**
**Unrestricted**
**£**
**Restricted**
**£**
**Total**
**£**|
|---|---|
|**Income:**
Donations
Interest||
||1
10,549.03
10,549.03|
||240.16
240.16|
|**Total**|10,789.19
0.00
10,789.19|
|**Expenses:**
Website
Conference fees
Helpline
Meeting Expenses
Postage & Packaging
Insurance
Subscriptions
Bank charges
Information Commissioner fees||
|||
||2
657.26
657.26|
||3
254.34
254.34|
||4
77.96
77.96|
||5
143.88
143.88|
||6
75.13
75.13|
||7
212.80
212.80|
||8
60.00
60.00|
||60.00
60.00|
||40.00
40.00|
|**Total**|1,581.37
0.00
1,581.37|
|Net Surplus / (Deficit)
Opening Balance 1st Apr 2023
Cash Movement
Closing Balance 31st March 2024||
||9,207.82
0.00
9,207.82|
||11,360.89
0.00
11,360.89|
||9,207.82
0.00
9,207.82|
||20,568.71
0.00
20,568.71|
## **Bank Balances as at 31 March 2024:**
## **Bank Balances as at 1st April 2023:**
||**Total**
**£**|||**Total**
**£**|
|---|---|---|---|---|
|CAF Gold Account
CAF Cash Account|15,708.52||CAF Gold Account|8,895.63|
||4,860.19||CAF Cash Account|2,465.26|
|**Total**|20,568.71||**Total**|11,360.89|
**Annual Report 2023–24**
**11**
## **Notes to Accounts**
1. Donations include individual fundraising initiatives and money received from online platforms that also collect gift aid on the charity’s behalf.
2. Website maintenance and hosting costs
3. Attendance at BSPGHAN conference March 2024
4. The helpline is currently staffed by volunteers with costs limited to payment for telecom
5. Zoom fees for the Meetup patient meetings which have been held on Zoom since the Covid pandemic
6. For distribution of information and fundraising materials
7. Liability Insurance provided by Markel International Insurance Company Ltd
There were no items of income or expenditure outside the United Kingdom.
All financial transactions have taken place through the regulated banking system. The Trustees are satisfied that the Treasurer has established and kept under review the financial controls and systems appropriate for the size of the Charitable Incorporated Organisation we represent.
No Trustee has received any payment other than reimbursement for proper expenses authorised by at least two signatories.
Our long term reserves policy is to accumulate sufficient funds to allow for a reasonable period of operation during periods of financial uncertainty.
We are very grateful for the fundraising efforts and donations made by so many people to support our charity.
8. Subscription to Association of Chairs
## **Authorised:**
**Jayne Fitzgerald** Treasurer
**Silvia Davey** Chair
**Annual Report 2023–24**
**12**
**9**
## **Declaration**
The trustees declare that they have approved the trustees’ report above.
Signed, on behalf of the charity’s trustees:
## **Signed:**
**Silvia Davey** Chair 21 June 2024
**Annual Report 2023–24**
**13**
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