- NARA Annual Charity Report FINANCIAL YEAR ENDING 30[th] APRIL 2025
NARA - The Breathing Charity, Moulton Park Business Centre, Redhouse Road, NORTHAMPTON, NN3 6AQ Phone: 01604 494960 or 01604 497550 - Website: naratbc.org.uk - Email: info@thebreathingcharity.org.uk Registered Charity 327033
NARA Annual Report - 1st May 2024 to 30th April 2025
In 1975, American singer-songwriter, Paul Simon, penned the lyrics to a song, ‘ Still Crazy After All These Years’ . It’s tells a somewhat melancholy tale full of sentimentality and follows a seemingly lonely man who by chance meets a former lover in the street. They sit and spend the evening together, having a drink and reminiscing about old times. At the end of the evening, alone again, he’s left wondering if those nostalgic thoughts override the reality of his situation.
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Over the last few months, we’ve been looking back over the past forty years of the life of our charity, those same feelings of sentimentality and nostalgia kicked in too. Those early days were a struggle, with the organisation, the work and development of the charity, from the outset when we simply wanted to raise a few pounds to help anxious parents, now to a national charity and the first port of call for many patients, doctors, and surgeries.
So, after 40 years we ask ourselves, ‘are we still relevant?’. We believe we are, if not more so than we were in 1984 due to the technological, social and cultural world we now find ourselves in, but will let you judge for yourself.
A quote from the parent of one of our first patients in 1984, who had used a respiration monitor due to their baby daughter stopping breathing said, “ To lose a child has to be one of the worse things anyone could have to experience, that makes your work very special and on behalf of my family we wish you well with your cause for the future. ”
To lose a child has to be one of the worse things anyone could have to experience
Little did we know then that 40 years later we’d still be here helping, not only babies with respiration monitors, but a wider range of the community from birth, through to adulthood, middle age, and senior citizens who simply want to take a breath.
Moving on to 2024, a request came into the office, it was from a disabled young mother, Jenny, who has two young children. Her email read, “ Hi there, I have a friend who suggested I reach out to you. I’m a disabled wheelchair user with many chronic illnesses, one of which is severe asthma. I currently have an NHS issued nebuliser that isn’t working very well. I have bought this up with my asthma nurse and she said in order to get new equipment I would need to be referred back to my consultant (which to be honest I do need anyway) but it will take a while (maybe 6+ months as it’s not emergent urgent).
In the meantime, she has advised me to either buy another (I’m low income disabled mum of two that’s just been made homeless so it’s not currently an option) or obviously attend A&E. The main reason for being issued home nebs was to keep me out of A&E firstly for the “normal” survive asthmatic reasons (no one likes being there all the time) but also because my immune system is often compromised or suppressed. My friend said there may be something you can do to help or you might be able to point me to someone who may be able to aid me. Thank you in advance for reading this .”
To many, you’d think this was an exceptional request, but no, it’s more typical than you’d expect. Indeed, a good number of our patients have these complex issues, as problems with their health have a great impact on their financial and living conditions too.
Whilst we whilst we cannot offer financial, or monetary support, our experienced team know how to signpost those like Jenny to other bodies who can assist with cost of living and associated problems. We helped Jenny with her nebuliser, she was delighted that we stepped in and helped so quickly.
Her reaction was, “ NARA is amazing, I cannot fault them at all. They contacted my doctor for approval, then, bing, bang, bosh, my new nebuliser arrived. Amazing! ”
Jenny helped by the provision of a nebuliser
Let’s look at Jenny’s request in more detail. She first mentions a friend referred her to us. On further investigation we found her friend had been helped by us, it shows our patients are pleased enough with our help, that they’re willing to put others in touch with us for help too. Jenny’s nebuliser was broken and she had beeb
been advised to buy a replacement, but simply couldn’t afford to do that. Many of those who apply for help are on low incomes, so purchasing one, or indeed any other piece of medical equipment relative to respiratory conditions, is simply not an option.
Jenny’s need for the nebuliser was to help keep her out of hospital as she is susceptible to infection due to her immune system being suppressed. Again, most if not all of our respiratory patients due to their age, or their condition, are prone to various infections, which
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unfortunately, seem to be prevalent in hospitals, doctor’s surgeries or in public places, especially indoors, where there are a great number of people breathing in re-circulated air. Our aim is to improve the quality of life to, firstly the end user, or patient, and then their immediate family. The consequences of serious illness can, and in the main, does affect many aspects of family life.
Lastly, over the years, we have the experience and knowledge of being able to help those with financial problems, by simply directing them to local groups and other bodies that can lead to positive outcomes. Many local communities, especially in this day and age, have an increasing number of people, throughout the age spectrum, surviving on charity from churches and food banks in their area.
Following our help, Jenny posted on her social media, “Let me introduce you to an incredible charity, NARA, they have completely changed my life .. I cannot recommend them enough, they are true life savers.”
Although life seems to be more complex in this day and age, it would appear our work has stood the test of time, we’ve evolved with those times and are still there to give a helping hand to those who struggle to breathe. Below are more examples of some of those assisted during this financial year.
Nebulisers
Since the pandemic, we seem to have more and more patients requiring nebulisers. Suffering from an ever-increasing list of breathing ailments from asthma through to more complicated and severe issues like bronchiectasis - a condition the NHS describe as where the airways in your lungs are damaged and produce a lot of phlegm, or mucus. It cannot usually be cured, but treatment can help manage it; and, idiopathic pulmonary fibrosis (IPS), where the lungs become scarred, which results in difficulty breathing. Whilst medication can arrest the progress of
this, it’s irreversible and in severe cases life threatening.
A cross section of some of those we’ve helped, this year by providing nebulisers and associated equipment include Annabelle, a young lady who has a number of conditions including brittle asthma, Elhers-Danlos syndrome (EDS), which is not normally associated with primary lung disease, but many associated with EDS experience debilitating respiratory symptoms. We gave her a portable nebuliser, firstly, as it is designed for ease of use and quiet operation reducing sensory overload and anxiety crucial for patients, such as Annabelle who also has autism, secondly it enables her to get out and about, enjoying the freedom of
We went the ‘extra mile’ with Zabir
nebulisers he required. We went the ‘extra mile’ with this patient too, due to his vulnerability, visiting him on a number of occasions to ensure the nebuliser is kept clean and fully functioning and able to deliver his medication.
/{ Melanie was another young lady who contacted us direct, we’d helped her previously, but her letter asked, \ “Hi, I just wanted to contact you to see if you can help me again as you provided me with a portable Nebuliser last year, Ive been making great use of it and now Im improving with my physical health and going out and about more volunteering in schools with a view to doing my teacher training in the new year - it has proved to be a vital piece of equipment. However, in light of this, I was wondering if you could provide a portable nebuliser that is able to be charged via USB - so I can charge via my power bank when out and about for the day? Ideally with a power indicator to show the charge level? It would be a massive help!”
Annabelle was delighted we could help her
movement rather than being house bound. She was delighted with our assistance, as her comment suggests, “ Wonderful, funky neb… Thank you so very much, this is going to be a game changer. I`m so happy. ”
We were delighted our previous assistance had helped her so much, giving her the freedom and independence to simply ‘get on with her life’ the epitome of our ethos.
Next is Zabir, an elderly gentleman whose first language is not English, amongst his ailments is COPD that compromises his ability to breathe. His original nebuliser broke-down, and he was not able to afford a replacement. His local respiratory team pointed him in our direction, and we were able to give him the new
Checking our suppliers, we provided her with a new lightweight portable machine, exactly what she wanted, she was delighted, saying,
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symptoms and around 4-13% of those suffering airway problems have TBM. We were asked to provide her with a nebuliser to help ease her condition, which we have.
George, a middle-aged man, was directed to us via his local respiratory team. He is a long-term asthma sufferer with the added complication of having bronchiectasis too, which
Giving additional equipment to Melaine allowed her to take up teacher training “The new nebuliser arrived today … it looks great, the USB charging feature will be perfect for me being out more doing my teacher training etc., Thank you”
Eileen, an elderly lady with a number of serious and severe respiratory issues, including
Eileen suffers from severe respiratory issues
asthma, bronchiectasis and tracheobronchomalacia (TBM) – defined as a collapse of the trachea and bronchial tubes causing breathing difficulties. It not only affects adults as research suggests that 1 in 2,100 babies have TBM
George, suffers asthma plus complications
results in mucus accumulation that can trap bacteria causing lung infections. Again, we were able to provide him with the necessary nebuliser and support he needed, even though this was short term.
Lastly, we come to Victor, and elderly man who finds himself in extreme poverty, complicated by several illnesses, including heart disease, diabetes and breathing issues due to COPD. Our team found it necessary, not only to provide him with a nebuliser following a request from his doctor, but also extra care to monitor he was using the equipment provided properly and to ensure it was clean and functioning well to deliver the medication relevant to his illness.
We could go on, with many more patients helped, but we believe that the above give an adequate cross section of those seeking our
Victor is another of those patients who need extra help to ensure his equipment is working assistance throughout this financial year.
Respiration Monitors, Apnoea and Tremor Guards
We have a rapidly growing list of patients who rely on monitoring equipment that alarms should they stop breathing. Initially, we helped by providing anxious parents with respiration monitors for their babies and infant children who suffered from apnoea or stopping breathing. Today, whilst still assisting the parents, medical equipment technology has moved on and now offers devices that help older children and adults who have conditions that lead to them stopping breathing. We refer to these pieces of equipment as apnoea and tremor guards.
Over the years, NARA has helped many, many anxious parents with respiration monitors for their babies, not simply to those who’ve suffered losing a child.
Highlighting patients helped by these monitors is firstly, Chester, a sibling of a former patient who was in need of a respiration monitor, due to his mother losing another sibling to ‘cot death’. There are very few agencies within the healthcare
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Chester’s need for a monitor was due to his mother losing another sibling to ‘cot death’.
system, even today, that can help a parent, or parents with anxiety following them previously losing a baby due to ‘cot death’. A number of parents can be assisted to deal with the next born following the loss of a baby by using a respiration monitor. The comfort of knowing the monitor will alarm if their baby stops breathing gives them the benefit of time to deal with any issues. Not all, but a good number, of doctors and health visitors feel that this ‘crutch’ helps worried parents deal with such anxieties until their baby seems to have the strength to battle through the early stages of life.
Tilly’s health visitor suggested we provide her with a monitor
Another baby we’ve helped from birth, is Tilly, who following a request from her health visitor, was given a
respiration monitor. Her mother’s twin sister had died of ‘cot death’ leaving Tilly’s mother very anxious. We’d previously helped her older siblings, who are now doing fine – Tilly too.
We move on to 18-month-old Bonny who suffered severe norovirus, which according to the NHS, ‘continues to grip the NHS with the number of beds taken up by patients with the virus nearly 150% higher than last year.’ The virus is commonly known as the winter vomiting bug, it is unpleasant and not only causes sickness but diarrhoea too, which left Bonny with tonic clonic seizures -
Bonny needed an apnoea and tremor guard due to suffering tonic clonic seizures
previously referred to as grand mal epilepsy, and apnoea. Due to her seizures, which can result in sudden muscle stiffness, shaking and loss of consciousness, a normal respiration monitor would not have been appropriate in this case. A respiration monitor detects movement, seizures include much movement, so we provided her with an apnoea and tremor guard, which sensor works by using infrared light technology that detects the blood flow under the skin and transmits this wirelessly via Bluetooth to a tablet, where it is converted by software to continuously display the wearers heart rate. The tablet processes this
constant flow of data and will raise an alert if the wearer’s heart rate falls outside the normal parameters, or indeed if the patient endures a seizure.
Finally, there’s another infant, Isla, who suffers apnoea attacks - stopping breathing, and Elhers Danlos syndrome, which we’ve discussed earlier in this report and how it affects respiration. Initially, we had provided her with a respiration monitor, but as she got older, we felt that one of the apnoea and tremor guards would be more effective for her, so she was given this, initially to work in conjunction with the monitor, but ultimately for the new equipment to replace the monitor.
Paediatric Healthcare Transition
Although, you will have read in our previous reports about the issues related to long-term child patients who move into adulthood. For the last couple of years, we are increasingly helping children, their parents and carers, that have either been referred by the hospital via new Paediatric Healthcare Transition Teams, or those that seem to have fallen between the ‘cracks’ in the system. This is where, due to age, youngsters elevate into the category of adulthood. A high value is placed on autonomy and independence, but for those with severe functional limitations “independence“ may be unobtainable for those requiring substantial assistance in daily life with parents often bearing high intensity, and long term care giving.
It includes especially those children, who from an early age, have suffered from complex health conditions over a number of years, including many that were born with these ailments, diseases, or disorders. The hospital system of care and support has become like a surrogate or proxy family; such is their reliance on them.
A request along these lines is as follows, “ Hello, I was signposted to you by the Community Respiratory Team to ask about applying for a
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Nevertheless, for these vulnerable patients caught up in this situation, it’s almost like they have to start again from scratch, with new hospital teams for their future care. A very traumatic period for the patient and their family.
Palliative Care
© Alamy —_—
For those journeying from childhood to adulthood, who suffer from disabilities, their path can become difficult and confusing for both them and their families and carers
disabilities for many years, had been taken away, it was like ‘a rug being pulled beneath our feet’, as she described it. Whilst many of those who have given that care was sensitive to their predicament, the bureaucracy halted any further assistance, treatment, or help. In the above case NARA has stepped in to help with new equipment to replace that taken away, indeed we’ve helped to provide equipment to several young people referred to us by these new Paediatric Transition Health Care Teams, during this financial year. They not only suffer from respiratory conditions, but many other complex issues including a 17-year-old young boy, spastic quadriplegic cerebral palsy, profound learning difficulties, epilepsy, gastrostomy fed, scoliosis, bilateral optic atrophy and astigmatism (registered blind), hyper salivation, intermittent muscle spasm, non-verbal. Also, an 18-yearold young man, suffering epilepsy, four limb cerebral palsy, scoliosis, gastrostomy fed, an 18-year-old young lady, suffering recurrent respiratory infections, thick secretions, cerebral palsy, gastric reflux, and a 17-year-old young lady suffering asthma, bronchiectasis, anaemia, and hearing loss. So, we hope we’ve able to provide some comfort for them there.
home nebuliser for a young person about to turn 18 years in the community that requires a home nebuliser and suction machine. If you could advise with how I apply for this, I would appreciate your support. ”
Whilst there are plenty of guidelines on paper which state the contrary, unfortunately, the harsh reality is that once a child turns 18, they become an adult and cannot be afforded the same help and support they have been used to. Age catches up on all of us, but to a child entering adulthood, suffering from a number of illnesses or conditions over a protracted period of time, see that care, help and support simply withdrawn, many at a moment’s notice. It’s not only unsettling and confusing for the patient, but their parents and carers too. For the patient, it’s like the loss of their ‘second family’. A mother of a ‘new adult’ caught up in this anomaly, told us her son’s care had been withdraw, and the nebuliser and other medical equipment was to be handed back immediately. There was no warning given, nor smooth transition from childhood to adulthood. Her son, couldn’t understand why those medical professionals at the hospital who’d given him much support through some dark periods of his life with both his physical and mental
When one thinks of palliative care, it’s normally associated with the more elderly people in society, or those who have at least had some sort of life, however, our first is fouryear-old Felix, who has suffered respiratory failure, along with quadriplegic cerebral palsy, and a genetic disorder that causes serious lung and liver disease. He needed a portable nebuliser so he could be taken out to make memories. So, this was more for palliative care rather than long-term assistance with recovery as the outcome. Whilst it is difficult to deal with cases of palliative care it’s much easier to accept than when the patient has not experienced those things that most of us take for granted. At such a young age, Felix has only taken the first few steps along his pathway.
Offering equipment and dignity for those needing palliative care
During this year, we’ve said farewell to several patients who wished to pass from this world to the next with a degree of dignity that has
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been afforded to them. Many wish to be surrounded by family and friends, in their own environment rather than the confines of a hospital, or hospice. Unfortunately, not all of us have that option, but where it does, we’re more than happy to lend a hand to family and carers by providing whatever medical equipment they need relating to their respiratory conditions, until the inevitable happens.
So, amongst others, we said goodbye to Patrick, Eric, Carole, Bani, Jon, and Harry – may they rest in peace.
Financial
Financially speaking, similar to many others, whether charity, business, or personal, this year has been a relatively difficult year. This is mainly due to the current global and national financial landscape, which has resulted in there not being as much disposable income available as in previous years, so we find ourselves around £10,000 short of our total income for the previous year. Nevertheless, despite this shortfall, and as mentioned in many previous reports, we are very fortunate over our history to have formed great relationships with many trusts, business, and individuals who have supported us financially, and this year has been no exception. We rise to this challenge and simply carry on. Indeed, on a positive note, we still have exceeded our aim to raise £100,000 per year by some £15,000. And still maintain above 80p in every £1 spent on the main objectives of our charity – this year almost 90p in the pound. Like last year, due to our minimal financial obligations, outgoing costs and commitments, we again feel we’re in a very positive position.
Expenditure wise, due to our ongoing programme of replacing worn out, broken, irreparable, or pieces of medical equipment that may cause cross contamination, with brand new items, our fixed assets have not changed; due to the fact
that this financial year has seen us purchase the same number of items as we have had to dispose of.
Due to increasing workload, we have increased the hours of our employed worker whilst in the main involved in admin duties, we found we needed extra help both on the medical side of things and fundraising too. With the medical side of things, delivering equipment to patients and co-ordination with healthcare professionals, especially with the new Paediatric Healthcare Transition programme (as mentioned earlier in the report), there is much more work involved with various agencies and the patients. Also, on the fundraising side of things, as well as providing assistance to those who wish to hold events for us, we’ve found it more challenging today, than it has been previously to try and raise historically similar amounts. Hence our fundraising costs have risen too, but although maybe not significantly assisting income this year, we’re sure this will increase our funds over the following years.
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We would like to express our gratitude from those who have donated or fundraised for us this year. Whilst many of those who support us wish to remain anonymous, those below have given us permission to use their details.
The Persula Foundation has recurrently helped us financially with our children and young persons projects.
Special thanks too to both The James Wise Charitable Trust and F B Coales (no 4 Family) Trust, again for their longevity of support
The following represent just a handful of the businesses who have been there for us for 30 years, or more – thank you.
The Paint & Bodyshop, Beckenham; A Abbott & Sons Funeral Directors, Rushden; Priory Press, Rushden; Wroughton Building Contractors, Swindon.
Finally, we once again received significant funding from, The Sporting Bears. NARA would like to express sincere thanks and gratitude to all who have helped financially.
Conclusion
We began this report by paraphrasing the Paul Simon song, ‘ Still crazy after all these years’ , changing the word crazy for relevant. We hope through this report and by the longevity of our charity we’ve been able to prove that we’re still, not only very relevant in this day and age, but have moved with the times to offer new technology and embrace those who suffer many complex problems as well as significant respiratory issues in today’s world.
To sum up, this is what we’ve achieved this year. We’ve continued to service over 1,200 of our core long-term patients with various types of equipment, replacing over 30 pieces of equipment for existing patients due to fair wear and tear, or simply just worn out due to continued use, and those that could cause crosscontamination. We’ve visited around 400 patients, many of them who make up our core long-term list and the remainder being new patients taken on this year. Our 24/7 helpline has kept us busy throughout the year with new requests for monitoring equipment, mains and portable nebulisers, constant requests for accessories and spares to deal with breakdowns, to ensure equipment
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gives peak performance for another year. Again, we dealt with around 2,500 calls, both incoming and outgoing, some involved those needing new equipment, others simply wanting advice, whilst some of our lonely patients just wanted to chat, having a talk with someone who had time to listen. Our total patient numbers increased by almost 20 per month, in the main for nebulisers, but also includes respiration monitors and apnoea and tremor guards too.
We’ve kept in touch with and offered advice to many patients and other people via our various social media sites. Many patients are members of our online community
and have been so for many years. They find it a safe space where they can openly share feelings, be vocal about their condition(s), express support for other group members and receive support from those with similar issues.
Unfortunately, due to age, illness, or being one of our palliative patients, we lost several of our ‘family’ throughout the year. We trust our intervention, however great or small, improved their quality of life, or gave them an opportunity to spend their last days with dignity. All in all, we’ve been kept incredibly busy.
We’d like to finish our report by rewording another song title, this
time the classic Motown single by the Four Tops, ‘ Reach out I’ll be there’ , to ‘reach out we’ll be there’. Indeed, over the years, as we’ve mentioned we have become the first ‘port of call’ for many respiratory teams the length and breadth of the UK. Clearly, we’ve been able to help many of those requesting our support.
However, we’ve only been able to help with the continued financial support from many donors, be they trusts, businesses, groups, or individuals - we would like to take this opportunity to thank each and everyone. We trust you’ll continue, just see what we can do with a little help from you - our friends.
We got by, thanks to a little help from our friends at
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THE PROCESS OF HELPING OUR PATIENTS
Prospective patients read what we offer either through our website, or reading our information leaflet, or via their GP or health professional
We’re then contacted by phone, Email, or letter. Our staff take full details to determine how and if we can help.
Once we agree on a course of action, we ask the GP or healthcare professional responsible for the patient to sign an authorisation form. Once complete we can pack the equipment ready to deliver
Delivery of the equipment is usually a via courier, Royal Mail, or our own representatives. We offer a 24 hour helpline to assist patients set up and enable them to keep their equipment in good working order
Once the equipment is received, our patients are called regularly to ensure all is working well
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- NARA Annual Charity Accounts
FINANCIAL YEAR ENDING 30[th] APRIL 2025 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
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