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2021-04-30-accounts

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The Breathing
Charity
Registered Charity 327033
FINANICIAL YEAR ENDING
30 [th] APRIL 2021
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NARA Annual Charity
Report
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NARA - The Breathing Charity, Moulton Park Business Centre, Redhouse Road, NORTHAMPTON, NN3 6AQ Phone: 01604 494960 - Fax: 01604 497550 - Website: naratbc.org.uk - Email: info@thebreathingcharity.org.uk Registered Charity 327033

NARA Annual Report - 1st May 2020 to 30th April 2021

Keeping Calm and Carrying On

Our new financial year began in the midst of the Covidpandemic, and lockdown in our country. According to government statistics infections were running at 10,000 new cases per day and testing capacity working flat out showing the biggest number in 24hrs with 122,347 provided over the previous 24 hours. Working toward a relaxation of lockdown restrictions the launch of a track and trace system was being rolled out. The UK government updated its coronavirus message from "stay at home, protect the NHS, save lives" to "stay alert, control the virus, save lives", with a number of plans afoot for a road back to a relative return to normality, led by the scientific analysis of the situation, being discussed. Our country, indeed, the world, was a very different place than it was just twelve months previously, and the challenges we as a charity faced, particularly as we assist with those suffering from severe respiratory conditions, were enormous. Nevertheless, this was not a time for blind panic, but working Caring for all the Family within government guidelines, providing the assistance and care to our patients we could and basically keeping calm and carrying on with our work.

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One of the biggest challenges we were up against was the total cessation of face-to-face contact with our patients, but still delivering them with the comfort and care of our support. As mentioned in our last report, the reality of the pandemic, was that the public at large, subject to lockdown regulations, were now understanding something of the situation our patients had become accustomed too for most of their lives, which enabled some to fully appreciate the loneliness, isolation and psychological traumas many of our patients endure day-to-day. The virus impacted our patients in other ways too, with Covid patients naturally given priority at GP surgeries and hospitals usual appointments for other ailments were subjected to delays and cancellations. This had a knock-on effect as the burden and support of these patients descended on other organisations and charities such as ours.

As for the charity as a whole, with some businesses closed, or many people working from home, and the chaos of the pandemic purchasing medical equipment was far from easy. Naturally, as Covid is a respiratory virus, the NHS had purchased much of the stock of nebulisers for use within the hospitals and equipping the new temporary regional ‘Nightingale’ hospitals to cope with an influx of patients. Things would obviously be very different due to the pandemic, and from the start of 2021 those difficulties would be compounded by the effects of Brexit too, but we were up for one of the most demanding 12 months in our charity’s almost 40-year history.

Monitors

Respiration Monitors

The good news to report in regard to respiration monitors during this year was the advent of the new Delta monitor, which finally gained the necessary approvals and certification to be release as a bone fide piece of medical equipment to be used to detect a baby’s respiratory movements. Largely based upon the design and working of the now defunct Graseby MR10, it was something we looked forward to being available as a credible replacement for the former stalwart respiration monitor. Of course, we firstly had to trial the new monitor alongside the existing MR10 - the monitor we had complete confidence in using through the life of the charity. The first Delta monitors were delivered during the early month of the new financial year and parents of babies suffering from apnoea were only too pleased to assist trial the new equipment.

Parents of the first baby to receive a Delta monitor lived in Tyne & Wear, their son (baby R), one of twins, was born prematurely at 24 weeks, and suffered bouts of severe apnoea attacks. After finding our charity on the website, and with the relevant approvals from

the child’s doctor, the medical equipment was provided - both an MR10 and a Delta monitor. Whilst baby R suffered breathing difficulties, thankfully his twin brother was fine. Using both monitors in tandem for around six months, baby R’s parents gave a positive report on the Delta monitor, saying they felt it ‘far superior’ than the MR10. This was great news for us indeed. Upon returning the monitors to us, and baby R now recovered, his mother messaged us the following, ‘ After worrying and struggling to get the equipment that my little boy needed, I came across NARA - The Breathing Charity where I spoke to a lovely lady who was so helpful and reassuring. The charity was literally a life saver I honestly can't thank them enough. ’

Baby R

The second baby assisted with the new Delta monitor was from Croydon, his mother had experienced a number of difficult births. This baby boy was born prematurely, so naturally the parents were very anxious for the safety of their new-born child, ‘M’. His parents were very au fait with the charity as we were also helping, and still continue to help, his older baby sister who had been born very premature and suffers severe apnoea and respiratory issues. At the time of writing this report, whilst both babies are progressing reasonably well, they still need the monitors and NARA’s support. From conversations with the parents, we learn the Delta monitor is performing very well.

Baby M and the new Delta monitor

Above: Baby M, Below: his sister

Another new baby helped with a respiration monitor was from Lincolnshire. Born to an older mum, baby I, a full-term baby, needed our assistance due to there being history of cot death in the family. Healthcare professionals felt it was entirely appropriate for the baby to be monitored during the initial months of her life. We’re pleased to report that baby has progressed well with no health issues, the monitor was simply provided to reduce parental anxiety and offer reassurance.

Baby I from Lincolnshire

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Of course, we had a good number of other children on monitors throughout this period who we continued to support, some only need support for a few months whilst others, who develop additional medical issues need more long-term assistance. For example, we first helped baby M, a little girl, from Hampshire, way back in 2015, initially due to prematurity. However, over the years, the child has developed a number of debilitating health issues concerning her breathing, which suggests a greater underlying issue - such as Ehlers-Danlos syndrome, which, to quote the National Library of Medicine, has the following respiratory issues, ‘ Persons with the Ehlers-Danlos syndromes (EDS) report a wide range of respiratory symptoms, most commonly shortness of breath, exercise limitation, and cough. Also reported are noisy breathing attributed to asthma, difficulty with deep inhalation, and inspiratory thoracic pain. ’ We have learned from our experience that; EDS is an underlying condition associated with sleep apnoea. We have a number of patients with this condition. So, even though baby ‘M’ is now six her parents still rely on the respiration monitor to detect her breathing movements, especially at night.

Other children helped during this financial year include the following

During the course of the year, all patients were regularly contacted by phone, internet, or our social media sites to make sure all was well and patient’s equipment working efficiently. Also, regular supplies of spares and accessories were sent out.

PulseGuard

In our last report we went into great detail of our using the PulseGuard monitor to assist a number of patients with respiratory complications, dwelling mostly on a little girl from Southampton with Retts Syndrome. This year, whilst we continue to help her and a number of others, we were presented with a three-year-old boy, named J from Warwickshire who had been diagnosed by healthcare professionals as suffering from floppy, unresponsive episodes of apnoea. So,

initially we were asked to provide a respiration monitor, however, on talking further with the nurse we felt that the PulseGuard would be a better solution as there was a suggestion that the boy fitted on occasions. Agreeing to using the PulseGuard, after a few months, the data downloaded from the equipment by his doctor, suggested an additional diagnosis of the boy’s condition. He was found to be suffering infantile spasms more commonly referred to as ’West’s Syndrome’. Epilepsy Action describe infantile spasms as follows, ‘ Infantile spasms are a very specific type of seizure with a characteristic age of onset (a typical age when seizures start). They are nearly always accompanied by a very characteristic pattern on the electroencephalogram (EEG). This pattern is called ‘hypsarrhythmia’. The combination of the infantile spasms, age of onset and EEG pattern defines the epilepsy syndrome called, ‘West syndrome’. It is called this after Dr William West, who first described the condition in his 4-month-old son in 1841. West syndrome happens in about one in 2,5003,000 children. This means that about 350-400 children will develop West syndrome in the UK each year. ’ Of course, the PulseGuard is the ideal piece of equipment to use in this situation as it has a dual role of observing both the boy’s breathing and fits. In this case, J is now in receipt of proper treatment for all his conditions, indeed, he has been able to attend nursery school.

Three year old J

During these initial stages of to the Covid19 variant plaguing our nation and the wider world, keeping the risk of cross contamination was at the forefront of our thoughts. Therefore, we asked parents to hold onto monitors for a longer period of time than normal, this was so we could await the relevant government advice of how to clean equipment once it was returned, so it was completely safe to resend out as and when required.

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Nebulisers

Consumed by Covid much highlight and attention has been given to respiratory conditions, both nationally and globally. Necessary equipment, including nebulisers, have been in short supply and we have encountered a number of difficulties in obtaining certain types and brand of nebulisers usually used by the charity. As previously mentioned, cross contamination has had to be at the forefront of our minds. Helping those with long-term health issues are not included in this as they need equipment full time, so it is rarely returned. However, short term loans, including palliative care for those patients needing equipment for a limited amount of time did need reassessing. It would be ludicrous us loaning expensive equipment just for a few weeks knowing, whilst Covid was still prevalent, we would possibly have to destroy it. We were able to identify a number of cheaper, but equally efficient nebulisers for shorter loans. However, where patients had contracted Covid-19 and needed our assistance with equipment, that equipment would have to be bagged up and retained by the patient’s relatives until we received guidance on how to deal with it.

In many cases, the use of a nebuliser does not simply allow a patient to administer necessary medications but allows many to lead an independent life without constantly requiring GP appointments and Hospital admissions. With the NHS under tremendous pressure dealing with the enormity of Covid, we felt our work became more vital in trying to keep already vulnerable patients away from these hubs where the virus could be easily transmitted.

We start with a letter we received from the wife of a patient in Great Yarmouth, Norfolk. Although we made little mention of it in our last report, it does encompass the difficulties and struggles suffered by many of those we help. Working with him throughout this financial year we thought it may be useful to report what our help can do and how appreciative they are to both of us as a charity and all who donate to us.

‘ Just wanted to write to you about how important a nebuliser is to my husband. My husband was diagnosed with tongue cancer 5 years ago, he underwent vigorous and intense radiotherapy and chemo which left him with a severe burnt mouth and tongue, so bad was the treatment it damaged his saliva glandes and stopped him being able to ever swallow again and stopped the movement of his tongue.

Whilst it was great news that the cancer had gone, we never imagined what an impact on all our lives it would be. My husband can NEVER eat or drink again and he is fitted with a peg in his stomach, and it is attached to a machine that pumps a liquid prescription food

into his stomach and water is pumped in him this way too. This has had a devastating impact on all of us now, I have to cook and eat in the kitchen on my own, no longer can go out for meals or stop and have lunch or a drink and we couldn’t go out for a meal on our 41-year wedding anniversary. We all find it hard when the family come together for Sunday roast and especially Christmas dinner because my husband has to go in the bedroom because it is so hard for him to see the food and drinks knowing he cannot have any himself. It pains me with every mouthful I can taste and enjoy that this social and enjoyable thing we all do every day, my husband cannot join in and do anymore.

He also has to deal with all the saliva and mucus build up in his throat and this is where the nebuliser is a very important piece of equipment because it loosens the mucus and makes his mouth damp, this is so important to free this as it can go down on his lungs and cause pneumonia. Although my husband feels tethered to his peg and using the nebuliser four or five times per day, we all know how important this equipment is to him. My husband and all of us are so very, very, grateful for donations that charities like NARA receive and the work they do is so appreciated because this helps people like my husband to continue to have some quality of life after cancer. We thank you all so very much for making his fight much easier. ’

Despite the rigors of Covid, and those he suffers on a daily basis, this gentleman is in good spirits, and we continue to assist him month on month. The story of his daily battle to do many things we all take for granted inspired our small team even more to rise to the current challenges the pandemic has added to many of those who, due to other dreadful conditions, are now considered the most vulnerable sector of society.

Naturally, the Covid virus had significant impact on many of our patients as due to their vulnerability, despite having the regulation PPE, they didn’t feel confident of going out to get regular exercise. A particular patient, a 27-year-old young lady, S, from Bradford, needed a specialised piece of exercise equipment to help build and keep her fitness levels to assist her breathing and her on-going health issues. Although not a usual purchase, we sourced a recumbent exercise bike for her and had it delivered to her home. Her words of thanks sum everything up very well.

‘ I cannot thank you enough for getting this bike for me, I’m thrilled. I can’t tell you how grateful I am. It allows me to get out of breath in a safe and controlled way which means I can work on building my fitness which is something I’ve not been able to do for a long time. And now, I can exercise meters away from nebuliser machines and steroid injections and where nobody will stare at me or ask me invasive questions about my medical devices and conditions. The ability to exercise

regularly in a way that is safe for me is something that I know is going to have a huge impact on my quality of life. It gives me hope, an element of control, and will mean I can enjoy more things with my family without struggling to breathe. I’m just so happy. Thank-you again, so, so, much. ’

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Another young lady, in her late teens, ‘H’, from Hampshire, an existing long-term patient of ours needed a more powerful and quieter nebuliser to administer necessary medication. As a college student and part-time worker, she needed something that drew minimal attention when in use. We provided her with a portable, sonic unit that more than adequately suited her needs. Again, a letter from her mother summed up her thanks.

‘ Thank you so much to NARA - The Breathing Charity for the new stronger improved silent nebuliser for H, it will make an enormous difference to her life allowing her more independence and privacy without a noisy neb going on during classes at college and work. Everyone deserves the right to breathe. ’

H from Hampshire

We follow the above with a resume of just a few examples of those new patients helped during this financial year.

During this financial year we kept up our support for those who needed palliative care. Those patients in the closing weeks, days and hours of their lives who wished to depart this world with dignity in their own environment, be it home, or care home, surrounded by close family and friends.

Support

Our work not only concerns the number of new patients we assist, but the ongoing support and assistance we offer to our list of long-term patients situated in the four corners of the UK, be they in England, Scotland, Wales, or Northern Ireland.

Despite COVID-19 lockdowns and government travel restrictions, in the last

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Holly, always says,
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Long-term patient A from Hertfordshire ‘ You are my family .’

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financial year we made, as essential workers, 164 visits to patients. Although these were much restricted to dropping equipment on their doorstep and watching them, or their carers retrieve it. We would then contact the patient by phone and talk them through setting up the equipment while parked outside their house. In some circumstances we also collected medication for them from their chemist or surgery.

At all times our deliveries were done using the recommended PPE including face masks, gloves and antiseptic gel. Our team also took

Typical delivery of equipment

precautions of having regular Covid tests and the necessary vaccinations as they became available, making sure they and the wider public stayed safe. Thankfully, through this period none were affected by the virus. Deliveries of equipment further afield was done by third party couriers, overnight stays in hotels were not something we considered as we felt it put those helping us at risk. Nevertheless, despite all restrictions we managed to get the relevant equipment and consumables delivered efficiently and effectively.

We made in excess of 2,000 telephone calls and spent almost the same number of hours on social media to assist and support our patients, a significant increase on last year as we sought new ways of simply keeping in regular communication and dealing with any issues patients encountered as they arose. Our helpline continued to be monitored 24hours-a-day, with many who called it thanking us for picking up, as they said many helplines offered by other organisations were just answer-phone messages, or obviously left unattended and merely rang and rang. On top of this our regular respiration monitor patients were sent out necessary disposable sensors, and our regular nebuliser patients were sent year packs and necessary disposable accessories. With Covid-19 prevalent, our total of other callers who were concerned about their own breathing conditions, Covid or that of a relative, or friend increased by almost 50% on the previous year. As you may appreciate, this was a ‘full on’ year of necessary work completed under very difficult circumstances.

Financial

Unlike many of our previous financial years throughout the almost 40-year history

of our charity, we entered this year with complete uncertainty, indeed it was quite daunting knowing that Covid, a respiratory virus, could put immense pressure on our small organisation. An unprecedented time, for sure, therefore we put a number of mechanisms in force to ensure we could negotiate our way through the challenging months ahead. We had looked at the opportunities of applying for government and local authority loans to ‘see us through’ but decided they would be an almost last-ditch option. Instead, we set some up some internal initiatives to survive including capping our spending month on month alongside a temporary Covid savings fund which proved very successful in our ability to cope with fluctuating income, along with our leaning on those bodies offering donations and grants we had built strong relationships with over our many years of existence. Our working with the band of suppliers who again we have forged great alliances with throughout our history, also bore much fruit in tackling the situation, although occasionally interrupted by the staccato of periods of local and national lockdowns. Of course, supply of equipment, much imported from our European neighbours, was affected not only by Covid, but by Brexit. Usual transit lines of goods since the UK’s divorce from the EU community has put a somewhat ‘spanner in the works’ of the free flow of goods in. It’s a question of time being a great healer before the raw politics of the situation will quell, which should lead to these lines returning to normal once again.

Our income from this financial year was on a par with that of the previous year, a fine testimony to the loyalty of our many supporters. Whilst we offer thanks to them all, we would like to express a special thank you to the following, The Lynn Foundation, Charlotte Marshall Charitable Trust, NEXT Plc and Persimmon Homes.

During the last weeks of this financial year we were awarded a substantial grant from Nationwide Building Society, which we will expand upon in our next report - 2021-2022. Suffice to say, it ensures a great start to the following year, giving us a firm foundation to work upon. We offer our sincere thanks to all concerned at Nationwide.

Logo of Nationwide

Two businesses that have been stalwart donors to us for over 25 years, also come in for a special mention they are, Plato Estates Limited and Marsh Labels Limited.

The pandemic put paid to the fundraising plans we had planned for 2020-2021, it was more of a case of putting events ‘on ice’, until it was more practical and safer to do so. Having said that, many of our patients and supporters found novel ways of raising awareness of our work and funds for our charity. Many thanks to one such retired lady and her helpers from Bristol, who produced some handmade novelty key rings, which not only championed NARA’s cause, but that of the NHS workers too. Promoting these on the internet using various social media sites, including our own their hard work raised £630.25.

During the year, we were also fortunate to have been given a legacy from the estate of the late Emma Hollands, from Hampshire, which amounted to £2,242.45.

Conclusion

As we ended our year, the beginning of the rollout of vaccines was underway, there was a sense of fragile optimism that life was returning to a partial normality with the relaxation of restrictions. However, it was abundantly clear, from all the scientific evidence that a return to the freedoms enjoyed of pre-pandemic world was an almost impossible reality. The best we had on offer was living alongside Covid and the limitations of its gravity for the foreseeable future. Despite the doom and gloom, it was refreshing to look back and realise that, as a charity, we had survived and weathered the storms and obstacles we had been subjected to. Thanks to our prudence and careful financial planning we had proved the robustness and sustainability of our charity,

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which had survived one of its’ greatest tests. We had delivered a restrictive but positive service to our patients, and in the face of all their frailties and vulnerabilities almost all of them had survived. We know the next few years will offer similar complexities and strains, but we have a firm foundation to move forward positively. As the title of this report mentions, during this tumultuous year, our busy little charity kept calm and carried on.

Anita Simmons 1953-2021

We leave you with some quotes from some of those we’ve helped during the year.

Palliative Care Clinical Nurse Specialist MacMillan Woodlands Centre Hinchingbrooke Hospital Huntingdon

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Cambridge Respiratory Team

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Arthur Rank Hospice

Parents of Baby A from Manchester

‘ ’ Parents of A from Northern Ireland

Mr & Mrs P from Middlesex

A friend of 11-year-old J from Liverpool

Patient A from Stevenage

In early February 2021, the trustees, staff and many of the patients of NARA – The Breathing Charity were saddened at the news of the passing of Anita, especially, Ann Jiggle, and her husband, Mike. It was around the end of 1983, that although living not too far from each other, Anita’s and the Jiggle’s paths crossed, but by the end of that year, through almost tragic circumstances they got to know each other. The Jiggle’s daughter, Kary, who was born in April 1983, suffered from a condition called apnoea, when for no apparent reason she would stop breathing. Despite all medical interventions there wasn’t much that could be done other than monitor her every breath 24hrs a day. This was done via a respiration monitor that would alarm should she stop, that cost over £300, which they had to buy themselves.

Just before Christmas of 1983, a knock came at the Jiggle’s door where they were met by Anita and her friend. They were collecting for a respiration monitor for her son Iain, who was in hospital after having suffered similar apnoea attacks to Kary Jiggle. Iain was not allowed to leave hospital for his first Christmas without one. Also, sadly, Anita had already lost two other children.

From that point, Anita and the Jiggle family joined forces and helped with fundraising, firstly to purchasing a machine for Iain and later to provide further machines for parents with children suffering similar medical conditions. Eventually, the charity was set up, registered and very soon, thanks to generous giving, had provided around 100 respiration monitors to others suffering from apnoea.

Anita had played a major role in that success, not only by helping to raise funds, but also assisting in delivering equipment and offering advice to worried parents. Although

quite private, Anita was a happy-go-lucky kind of person who thought the world of her children and was the life and soul of many fundraising events.

Over the years, we lost touch, until about five years ago when she moved back to the area. By that time, Anita said she wasn’t in the best of health and was moving to Wellingborough. Her son, Iain, had become a chef and was in Central America.

Summing up, it’s a shame that the charity lost touch with Anita, as she couldn’t enjoy the fruits of her initial labours, seeing many smiling faces of the children helped in those embryonic years of the charity.

Today, her legacy lives on through the work and success of NARA – The Breathing Charity, that has given many hundreds of people a quality of life they could not have achieved without its’ intervention. A charity which would have never come to fruition had Anita not knocked the Jiggle’s door almost 40 years ago. RIP Anita.

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The Breathing
Charity
Registered Charity 327033
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FINANICIAL YEAR ENDING 30[th] APRIL 2021

- NARA Annual Charity Accounts

NARA - The Breathing Charity, Moulton Park Business Centre, Redhouse Road, NORTHAMPTON, NN3 6AQ Phone: 01604 494960 - Fax: 01604 497550 - Website: naratbc.org.uk - Email: info@thebreathingcharity.org.uk Registered Charity 327033

NATIONAL ASSOCIATION F R THE RELIEF OF APNOEA Charity Information Trustees A Jiggle E Atkins K Jiggle Charity Number 327033 Charlty Offices Moulton Park Business Centre Redhouse Road Moulton Park Northampton NN3 6AQ Examlner Andrew Nottingham Taxwright 65 Moss Street Keith Banffshire AB55 SHE Bankors Barclays Bank PIC 267 Wellingborough Road Northampton NN14YD

NATIONAL ASSOCIATION FOR THE RELIEF OF APNOEA

I report on the accounts of the Trust for the year ended 30 April 2021 which are set out on pages 3 and 6

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NATIONAL ASSOCIATION FOR THE RELIEF OF APNOEA

The notes on pages 5 and 6 form part of these accounts

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NATIONAL ASSOCIATION FOR THE RELIEF OF APNOEA

The notes on pages 5 and 6 form part of these accounts

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NATIONAL ASSOCIATION F R THE RELIEF OF APNOEA Notes to the Accounts For the Year Ended 30 A ril 2021 Accounting Policies Basis of Preparation of Accounts The accounts are prepared under the historical cost convention and include the results of the charity's operations which are described in the Trustees, Report and all of which are continuing. The accounts have been prepared in accordance with the Statement of Recommended Practice for charity accounts. The charity has taken advantage of the exemption in Financial Reporting Standard No 1 from the requirement to produce a cashfiow statement on the grounds that it qualifies as a small charity. Income Voluntary income and donations are accounted for as received by the charity. The income from fundraising ventures is included gross, with the associated costs included in fundraising costs. No pemianent endowments have been re￿iVed in the period. Value Added Tax Value Added Tax is not recoverable by the charity, and as such is included in the relevant costs in the Statement of Financial Activities. Fundraising Costs Fundraising expenditure comprises cosls incurred in inducing people and organisations to contribute financially to the charity's work. This includes the cost of advertising for donations and the staging of special fundraising events. Management and Administratlon Expenditure Expenditure on management and administration of the charity includes all expenditure not directly related to the charitable activity or fundraising ventures. This includes costs of renting and running office premises, staff salaries for administrative staff and fees of an independent examination.

NATIONAL ASSOCIATION F R THE RELIEF OF APNOEA Income 2021 2020 Net transfer from savings Donations Medical Contributions 2,000 118,635 790 119,563 121425 Admlnlstration Expenditure 2021 2020 Office Rent and Services Administration Staff Independent Examination 6,081 4,080 486 5,567 5,943 468 Staff Costs No remuneration was paid to trustees in the year, nor were any trustees, expenses reimbursed. The staff costs were.. 2021 2020 Wages and Salaries The average weekly number of staff employed by the charity during the year was as follows= 2021 2020 Administrative Current Liabilities 2021 2020 Accrual 486