METABOLIC_SUPPORT_UK - Accounts

The trustees present their annual report and financial statements for the year ended 31 March 2022.

The financial statements have been prepared in accordance with the accounting policies set out in note 1 to the financial statements and comply with the charity's governing document, the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005, the Charities Accounts (Scotland) Regulations 2006 (as amended) and "Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)".

The charity's primary aims are to:

• The relief of children, young adults, family members and carers affected by metabolic diseases in particular by means of:

1. Providing for the same group, an information, advice and support service.

2. Putting the same group into contact with each other for their mutual benefit, help and support.

3. The provision for grants and allowances for the same group and in addition to hospitals, homes or institutions, as shall from time to time be determined, for the purposes of medical treatment, care and relief from suffering.

• The relief of adults who are affected by metabolic diseases by the provision of support and services which are not otherwise provided by any other metabolic disease group in England, as the trustees think fit.

• The education of Health care professionals, other professionals and the general public about metabolic diseases.

• To provide medical research into metabolic diseases and their diagnosis.

The trustees have paid due regard to guidance issued by the Charity Commission in deciding what activities the charity should undertake.

Metabolic Support UK is an umbrella patient advocacy organisation founded in 1981, supporting and advocating for people living with Inherited Metabolic Disorders (IMDs) and their communities.

We support over 20,000 people living with one of over 500 IMDs, across the world. IMD’s are rare, lifelong genetic disorders caused by an enzyme deficiency affecting the metabolic pathway which if undiagnosed or untreated, can cause irreversible complications, or sadly even death.

Metabolic Support UK delivers a wide range of support and advocacy services to address unmet needs for all IMD communities but with a focus on those for whom there is no established patient group. Using qualitative and quantitative data generated via diverse methodologies, our small and dedicated team works to proactively identify priority needs. We develop evidence-based outputs and programmes to ensure the maximum impact for individual patients, collective patient communities and the wider IMD community.

Our vision for the future: By 2030, Metabolic Support UK wants to see advances across all care and services for the IMD community. This includes early diagnosis, informed and empowered patients, and access to the treatments and services that are available to support families living with these conditions to enjoy a better quality of life.

Organisational Development

This year our new CEO, Kirsty Hoyle, began in August 2021, building on the existing 2030 strategy to develop a programme of work that is relevant for our communities now and in the future. We broadened our focus with an increase in policy work and developed our insight arm, MSUK Insight, looking for paid opportunities for our communities to contribute to healthcare and treatment development.

Achievements and Performance

This was a year of growth and development for MSUK, against a backdrop of political and social instability. Our communities started to branch out and we saw increased interest in travel and holidays which threw up an issue around travel insurance. We launched a report into travel insurance issues and are now working with leading travel insurers to establish better options for our IMD community. Our international community was affected by the war in Ukraine and we worked with UK stakeholders to establish routes of support for Ukrainians coming to the UK, including publishing our an advice leaflet in English and Ukrainian. We hired our first Policy focused member of staff and increased our presence in relevant groups across the rare disease policy space. Our individual support remained as strong as previous years, with an increase in international enquiries reflecting our growth as the leading international organisation supporting people living with a IMD.

Strategic Implementation

By 2030, we want to see advances across all care and services for the IMD community; this includes early diagnosis, informed and empowered patients, and access to the treatments and services that are available to support families with these conditions to enjoy a better quality of life.

Our commitment to our community is to make sure that their voices are heard across all levels of decision-making and policy implementation. We work collaboratively and transparently as we strive to achieve our objectives, ensuring the best outcomes for those affected by IMDs.

In order to achieve this, we developed our long-term strategic pillars based on our evidence and insight of the needs of those we support. These four pillars are:

1. Individual Support

2. Building Communities

3. Empowerment

4. Advocacy

Individual Support

We recognise that living with a rare IMD can have added financial, practical and emotional burden. As part of our Individual Support stream of work we aim to provide first line emotional and practical support tailored to anyone who wants it via our experienced and qualified support team.

To improve the accessibility of our support we: provide individual and peer support through our helpline and Metabolic Connect services, produce accessible disorder information and resources, and work in collaboration with other organisations. By taking a proactive approach to addressing unmet needs based on data and signposting to other organisations we can ensure relevant and timely support is available.

MSUK Coffee Lounge    
We continued our virtual coffee lounge. Every other Wednesday all members of our community can join us for an online video chat. It provides a relaxed, confidential space where people can share experiences and seek support from one another. These sessions are continuing to provide value post-pandemic, with a regular cohort of attendees. A number of regulars were able to meet in person for the first time at our Family Fun Day held later in 2022.

Building Communities     
Living with a rare IMD can feel isolating for both the people living with the condition and their families or caregivers. We work to reduce isolation by helping to bring people together to share experiences and ask for advice.     

Anyone affected by an IMD can join our disorder specific online communities, access one-to-one introductions, or find wider peer-to-peer support. Throughout this support we are keen to remove barriers, creating spaces that are inclusive, safe, and accessible.

We aim to expand our communities, supporting harder to reach cohorts and developing a network for each community, provide individual support and resources where needed in a timely manner, and address unmet needs. Identifying and working with Community Ambassadors is vital, ensuring the work we do benefits and supports the community members.

Key Community Building Achievements 2021-2022:

1. 40 years of MSUK    
   In 2021, MSUK celebrated 40 years of innovation, support, and progress. We took the time to reflect on our story thus far and look toward the future through sharing the voices of our community and a report. It is a story of how one family made a difference for millions of others but also an insight into the rare disease sector more broadly – a sector full of passionate individuals challenging a system that leaves them out.    
   Moving forward into 2022 and beyond, we will continue to carry the spirit of our founders, delivering knowledge and power directly into the hands of people living with IMDs. Our report looked back on 40 years of change across the rare disease and IMD landscape, celebrating and sharing the progress that has been made, whilst also being critically aware of work that is still needed.

2. Contact Management    
   We implemented a new contact record management system which provides full visibility across our different community streams. This system increased our ability to connect our communities by allowing us to make connections across different areas of shared experience including geographic, interest and disease     
   

Community Support    
MSUK Communities: In 2022-2022 we supported over 45 Disease specific community groups. We developed 2 new disease specific groups across the year.

Empowerment

We want to ensure that people living with IMDs are well informed about their choices, at all stages of their life and condition. Our communities should have the means to assert their right to access care or treatment that should be available to them, as well as the ability to provide good self-management.

We aim to provide accessible resources about conditions and new developments, ensuring people are aware of the options available to them. In turn they can make informed decisions ranging from diagnostic tools, treatment options, and care pathways. Facilitating platforms and opportunities for people to share their experiences allows the community to empower each other. Enabling Community Ambassadors in these spaces elevates this, leading people to become more proactive, vocal, and confident. In turn people feel empowered to contribute to development of disorder specific toolkits and frameworks, leading on their condition and self-care.

In 2021-2022 we were part of more than 30 events, forums, groups, and committees;

Attending relevant professional events allows us to raise the flag for our community and make vital connections with sector colleagues:

• British Paediatric Neurology Association Event, Virtual Stand

• Health Technology Assessment International Conference, Online

• British Inherited Metabolic Disorder Group Conference, Newcastle

We sit on forums and groups that allow us direct opportunities to influence policy, access to treatments and on-going care:

• Rare Disease Framework Forum

• Inherited White Matter Disorder Group

• Menkes Clinical Trial Steering Group

• Metabolic Clinical Referencing Group

• Primary Hyperoxaluria Type 1 Discussion Groups and Panels

• Mustang Steering Committee

• Menkes Clinical Trial Steering Committee

• Pyruvate Kinase Deficiency Advocacy and Advisory Council

• IMD Newborn Screening Forum    

Our partnerships with academics, healthcare professionals and other patient advocacy organisations provide a unique opportunity to advocate across diverse spaces:

• PNPO Research Project

• X-Linked Hypophosphatasia with Kyowa Kirin

• Rare Bone Alliance Members

• Lysosomal Storage Disease collaborative

• Genetic Alliance

• Rare QOL

FOCUS ON: Digital Tools for Rare Diseases

Metabolic Support UK is part of the three-year Digital Tools for Rare Disease project (DT4RD) led by Aparito. This innovative project brings together multinational consortium of leading experts with the aim to develop a digital platform capable of assessing upper limb function remotely. The point between ambulant and non-ambulant is a pivotal juncture in the progression of rare disease which isn’t often accounted for in conventional methodology and tools.

Our communities need access to non-invasive tools that allow them to contribute to research without increase to their everyday burden, and we were delighted to be involved from the outset, showing a real commitment to embedding lived experience or rare disease patients in this project.

We also ensure there are opportunities for our community members to directly advocate:

In February 2022 we partnered with Genetic Alliance to highlight how IMDs may affect the heart by supporting a member of our community to share their son’s story with VLCADD.

CEO Kirsty Hoyle alongside a member of our community spoke at Royal Society of Medicine’s event ‘Blue Moons are not so rare: Metabolic, Genetics and Uncommon diseases.’ The opportunity for one of our families to open such an important event in a supported way is an epitome of our advocacy work.

3. MSUK Patient Survey 2021    
In 2021 we ran a patient survey to gain greater insight into the needs of our IMD community. 97 people responded including people living with IMDs, parents and carers, and family members.
Key data from this survey told us that our community face difficulties with misdiagnosis, support following a diagnosis, accessing emergency care at their local A&E department, and accessing care and support.

“It took several years to find the diagnosis, leading to a delay in treatment and irreparable damage”

For participants, diagnosis typically took place between the ages of 0-4 with a referral to a specialist in under 3 months. Most said they find their condition easy to manage, with a large majority managing their condition via a combination of diet and medication.

“There are challenges everyday when living with a metabolic condition”

Alongside quantitative data the survey provided an abundance of qualitative data. Whilst this is harder to consolidate, it contributes tremendously to our overall awareness and comprehension of our community; their experiences, difficulties faced, and outstanding areas of support and resources. Together this helps us to centre all our work around the voice, opinions, and experiences of our community.

“General fear for the future, fear of the unknown!”

4. Consultations and Submissions    
Involvement in consultations and submissions allows us to ensure our community’s voice is heard throughout the entire process that affects them, their treatment, and their wellbeing. See below for an overview of our impact in consultations and submissions in 2021-2022:

Primary Hyperoxaluria Type 1 (PH1) NICE Consultation

• In collaboration with Oxalosis and Hyperoxaluria Foundation (OHF).

• Carried out interviews and jointly published a report entitled ‘The patient perspective of unmet need’ in collaboration with RareQOL and OHF.

X-Linked Hypophosphataemic Rickets (XLH) NICE Scoping Workshop

• In collaboration with XLH UK

Hypophosphatasia (HPP) Managed Access Agreement

• Led on the representation of patient voice during the MAA and provided updates to the community.

• 2021 was the penultimate year of the MAA however we succeed in securing an extension till February 2023 due to COVID-19.

Cystinosis Treatments working with Cystinosis Foundation UK

- Treatment 1: Cystadrops

• Ongoing collaborative work and recommendation from Clinical Priorities Advisory Group (CPAG) saw NHS England decide to routinely commission Mercaptamine hydrochloride (Cystadrops) for corneal cystine deposits in people aged older than two years.

• Success of this led to the publication of a case study ‘Delivering the Patient Voice and Collaborative Working: Cystinosis and the NHS Clinical Priorities Advisory Process’ by MSUK and and CFUK.

- Treatment 2: Procybi

• Through the SMC, MSYK and CFUK ran a patient survey and worked in collaboration on a joint submission.

At the year end, Metabolic Support UK’s accounts showed a surplus of £27,012 (2021: £101,384) made up of unrestricted funds. Last years large surplus was from the sale of a property and legacies received.

The Board of Trustees of Metabolic Support UK continue monitor the financial health of the charity.

The unrestricted reserves held by the charity is currently £623,909 higher than the policy of 6 months running costs (approximately £114,000). The Board committed to the planned investment of the funds into the development of the charity in the short to medium term, to create future suitability and increase the positive impact on the lives of those who are affected by Inherited Metabolic Disorders now and in the future.

The property that formed the charity’s headquarters in Crewe was sold in the 2020/21 financial year.

At year ending March 2022, Metabolic Support UK’s funds are held in the Co-operative Bank.

The charity’s assets are considered to be adequate to fulfil our obligations in relation to future financial commitments. As the majority of our assets are liquid, no significant delays or shortfalls are anticipated in realising these assets into cash.

The trustees has assessed the major risks to which the charity is exposed, and are satisfied that systems are in place to mitigate exposure to the major risks.

The charity is a company limited by guarantee.

That charity is governed by its Memorandum and Articles of Association and the said Memorandum and Articles of Association were amended in January 2014 and the relevant amendments agreed with the Charity Commission for England and Wales and posted with Companies House.

The trustees, who are also the directors for the purpose of company law, and who served during the year and up to the date of signature of the financial statements were:

Recruitment and appointment of new trustees

New trustees are recruited and appointed by the existing trustees as vacancies arise on the Board.

Induction and training of trustees

New trustees are provided with information about the charity and its work and their role and responsibilities as trustees.

The trustees' report was approved by the Board of Trustees.

I report to the trustees on my examination of the financial statements of Metabolic Support UK (the charity) for the year ended 31 March 2022.

As the trustees of the charity (and also its directors for the purposes of company law) you are responsible for the preparation of the financial statements in accordance with the requirements of the Charities and Trustee Investment (Scotland) Act 2005 (the 2005 Act), the Charities Accounts (Scotland) Regulations 2006 (as amended) and the Companies Act 2006 (the 2006 Act). You are satisfied that the financial statements of the charity are not required by charity or company law to be audited and have chosen instead to have an independent examination.

Having satisfied myself that the financial statements of the charity 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 the charity’s financial statements carried out under section 44 (1) ( c) of the 2005 Act and section 145 of the Charities Act 2011 (the 2011 Act). In carrying out my examination I have followed the requirements of Regulation 11 of the Charities Accounts (Scotland) Regulations 2006 (as amended) and all the applicable Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act.

Since the charity is required by company law to prepare its accounts on an accruals basis and is registered as a charity in Scotland your examiner must be a member of a body listed in Regulation 11(2) of the Charities Accounts (Scotland) Regulations 2006 (as amended). I confirm that I am qualified to undertake the examination because I am a member of ICAEW, which is one of the listed bodies.

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:

accounting records were not kept in respect of the charity as required by section 386 of the 2006 Act and Regulation 4 of the 2006 Accounts Regulations; or

the financial statements do not accord with those records; or

the financial statements do not comply with the accounting requirements of Regulation 8 of the Charities Accounts (Scotland) Regulations 2006 (as amended) and do not comply with the accounting 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

the financial statements 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 in order to enable a proper understanding of the financial statements to be reached.

Michael Caputo FCA

The statement of financial activities includes all gains and losses recognised in the year.

All income and expenditure derive from continuing activities.

The company is entitled to the exemption from the audit requirement contained in section 477 of the Companies Act 2006, for the year ended 31 March 2022.

The directors acknowledge their responsibilities for complying with the requirements of the Companies Act 2006 with respect to accounting records and the preparation of financial statements.

The members have not required the company to obtain an audit of its financial statements for the year in question in accordance with section 476.

These financial statements have been prepared and delivered in accordance with the provisions applicable to companies subject to the small companies regime.

Metabolic Support UK is a private company limited by guarantee incorporated in England and Wales. The registered office is Unit 11-12 Gwenfro, Technology Park, Croesnewydd Road, Wrexham, LL13 7YP.

The financial statements have been prepared in accordance with the charity's governing document, the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005, the Charities Accounts (Scotland) Regulations 2006 (as amended) and “Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)” (as amended for accounting periods commencing from 1 January 2016). The charity is a Public Benefit Entity as defined by FRS 102.

The charity has taken advantage of the provisions in the SORP for charities applying FRS 102 Update Bulletin 1 not to prepare a Statement of Cash Flows.

The financial statements are prepared in sterling, which is the functional currency of the charity. Monetary amounts in these financial statements are rounded to the nearest £.

The financial statements have been prepared under the historical cost convention. The principal accounting policies adopted are set out below.

At the time of approving the financial statements, the trustees have a reasonable expectation that the charity has adequate resources to continue in operational existence for the foreseeable future. Thus the trustees continue to adopt the going concern basis of accounting in preparing the financial statements.

Unrestricted funds are available for use at the discretion of the trustees in furtherance of their charitable objectives.

Restricted funds are subject to specific conditions by donors as to how they may be used. The purposes and uses of the restricted funds are set out in the notes to the financial statements.

Cash donations are recognised on receipt. Other donations are recognised once the charity has been notified of the donation, unless performance conditions require deferral of the amount. Income tax recoverable in relation to donations received under Gift Aid or deeds of covenant is recognised at the time of the donation.

Expenditure is recognised once there is a legal or constructive obligation to transfer economic benefit to a third party, it is probable that a transfer of economic benefits will be required in settlement, and the amount of the obligation can be measured reliably.

Expenditure is classified by activity. The costs of each activity are made up of the total of direct costs and shared costs, including support costs involved in undertaking each activity. Direct costs attributable to a single activity are allocated directly to that activity. Shared costs which contribute to more than one activity and support costs which are not attributable to a single activity are apportioned between those activities on a basis consistent with the use of resources. Central staff costs are allocated on the basis of time spent, and depreciation charges are allocated on the portion of the asset’s use.

Tangible fixed assets are initially measured at cost and subsequently measured at cost or valuation, net of depreciation and any impairment losses.

Depreciation is recognised so as to write off the cost or valuation of assets less their residual values over their useful lives on the following bases:

The gain or loss arising on the disposal of an asset is determined as the difference between the sale proceeds and the carrying value of the asset, and is recognised in the statement of financial activities.

Cash and cash equivalents include cash in hand, deposits held at call with banks, other short-term liquid investments with original maturities of three months or less, and bank overdrafts. Bank overdrafts are shown within borrowings in current liabilities.

Basic financial assets, which include debtors and cash and bank balances, are initially measured at transaction price including transaction costs and are subsequently carried at amortised cost using the effective interest method unless the arrangement constitutes a financing transaction, where the transaction is measured at the present value of the future receipts discounted at a market rate of interest. Financial assets classified as receivable within one year are not amortised.

Basic financial liabilities, including creditors and bank loans are initially recognised at transaction price unless the arrangement constitutes a financing transaction, where the debt instrument is measured at the present value of the future payments discounted at a market rate of interest. Financial liabilities classified as payable within one year are not amortised.

Debt instruments are subsequently carried at amortised cost, using the effective interest rate method.

Trade creditors are obligations to pay for goods or services that have been acquired in the ordinary course of operations from suppliers. Amounts payable are classified as current liabilities if payment is due within one year or less. If not, they are presented as non-current liabilities. Trade creditors are recognised initially at transaction price and subsequently measured at amortised cost using the effective interest method.

Financial liabilities are derecognised when the charity’s contractual obligations expire or are discharged or cancelled.

The cost of any unused holiday entitlement is recognised in the period in which the employee’s services are received.

Termination benefits are recognised immediately as an expense when the charity is demonstrably committed to terminate the employment of an employee or to provide termination benefits.

Fundraising income

Fundraising income

Coronavirus job retention scheme

National Lottery Coronavirus grant

Direct charitable activities

Direct charitable activities

Rent, rates and cleaning

Insurance

Light & heat

Repairs & maintenance

Printing, postages and stationery

Telephone and IT costs

Meetings travel & accommodation

Sundries

Recruitment fees

Bank charges

Projects

Equipment hire

Marketing

Professional fees

Human resource fees

Independent examination

Accountancy

The average monthly number of employees during the year was: 4

Total remuneration for the key management personnel of the charity was £90,462 (2021: £88,677).

Unrestricted

Restricted

Unrestricted

Restricted

There were no disclosable related party transactions during the year (2021 - none).