X

Our Achievements

“Helping Hands”

For all our supporters-wherever you may be…

14/10/14

I have long been waiting to have the privilege of writing this first and most important report on where “20-20 Voice” Cancer fundraising is heading and I am absolutely delighted to pass this news on to you all.

We are in the process of purchasing our first major piece of equipment for the Leicester Royal Infirmary ENT cancer unit:

the Flexi-Video-RhinoLaryngoscope

Flexi-Video-RhinoLaryngoscopeThis be the beast of ‘throat-ectomies’

This is where it all started from and the story is short & simple folks! My surgeon, after a 21/2 hr emergency tracheotomy, sat by my bedside a couple of days later and apologised to me because he felt that the only option was to remove the entire larynx and bemoaned the fact that NHS cuts were stopping him from being able to treat ‘his patients’ as ‘he wanted to’. He pointed at a picture in a magazine he was carrying and simply said “If we had that, we could diagnose throat cancers so much quicker but we have to battle for every single thing/penny we get”.

Endoscopic tissue sample grabber
Endoscopic ’tissue sample grabber’

His quiet, laconic words hit me immediately, I felt for this brilliant medical man, who had hands like ‘hams’ but who’s touch was as gentle as a babies, and immediately uttered the immortal words, “Andy, you save my sorry ‘ass’ and I’ll make sure you get your, err, err, rhino-thingy-wotsit!” He gazed at me for a few moments, smiled and then shook my hand. The deal was done folks.

I hadn’t got a clue how I was going to carry out this promise but nearly 4 years later, £15,000 later and with the immeasurable help of hundreds of people, here we are, ready to rock ‘n’ roll with our first, much promised and much fought for:

FLEXI-VIDEO-RHINOLARYNGOSCOPE

cheque presentation Oct 2014
presenting our cheque for the Flexi-Vide-Rhinolaryngoscope to Andy Moir. (14th October 2014)

For those of you who are wondering what we are going to do now that we have achieved our goal, let me tell you this folks…… there is plenty more we need to do in this sphere, so the ‘Endoscopic Biopst Grabber’ is next on the list.  Awareness is still limited among the vast majority and we are still looking into a tele-communication system for all larys to be able to cope with.

Other hospitals need our help too as the LRI (Leicester Royal Infirmary) is not the only major Head & Neck cancer unit in the country. But, before any of that, we need to buy the ‘little brother‘ of our friend FVR (above) for he is the new ‘jewel in the crown‘.  He can sneak down, alongside the FVR tube and snick off a tiny (but correctly pinpointed) little bit of human tissue from deep inside the neck, throat, larynx etc. He can do this because WE (that’s all of us) have provided the ENT boys with the FVR which shows up the entire internal view of the larynx on a 30” full colour TV screen. Together we’ve done that! Together we’ve created this wonderful opportunity for our specialists to act fast and possibly save a sufferer what many of us have already endured: 8-10-12-14 even 16hrs of surgery to try and correct what cancer has tried to destroy. This is not to mention, of course, the horror of finding that you can no longer verbally communicate!

12/01/15:

Excellent news as we are now presenting the Kinmonth ward with an i-pad for all those unfortunate enough to lose their voice-box/larynx. This i-pad will be a gift to the ward so that all such lary’s can quickly get accustomed to communicating in a different way-by letting a machine do it for them!

This means that even the day after an operation new laryngectomees will be able to ‘talk’ with other people instead of laying their feeling totally useless. This is another major step forward for “20-20 voice” Cancer as we strive to help all head & neck cancer patients. This donation has been included in the hospital “Together” magazine:

i-Pad donated to Kinmonth Unit

Apple i-pad“In January, a local head and neck cancer charity, “20-20 Voice” Cancer, presented an i-pad to the
Kinmonth Unit at Leicester Royal Infirmary. The kind donation was made in memory of patient who had a laryngectomy (voice box removal) and removal of her tongue last year, who unfortunately passed away shortly after finishing her chemotherapy.

i-pad presentation
Phil Johnson presents Tracey Brooks with the i-pad

Tracey Brooks, Macmillan head and neck clinical nurse specialist said: “The i-pad is now being used
to help patients who have a laryngectomy or head and neck surgery which often leaves them unable
to communicate. It’s been loaded with a brilliant speak easy app and has already had a really positive effect on our patients.”

16/07/15

*****

And moving swiftly on folks, we have just donated another i-pad, but this time to the Maxillofacial ward in the Leicester Royal Infirmary.Tracy B & Charlotte P escorted me to wherever this particular ward lives (it is easy to get lost believe me!) and introduced me to some of the staff and a consultant no less! Tracy & Charlotte explained what we were all about and they were genuinely delighted to accept the i-pad. Even Mr Avery’s stern countenance fractured into a near smile . I jest of course.

Having met some of the previous patients I was appalled that they had no communication aids apart from “pen ‘n’ paper” so the Trustees quickly agreed to help them, and now any patients (pre-op or post-op) that are struggling to ‘talk’ can now  ‘talk’ via the i-pad.

A damned fine day indeed.

*****

Feb 2017:

We also went down a different route as we decided, after a few days of unearthly silence at Christmas time, that our Speech Therapy dept needed our assistance so we purchased a brace of the Tru-Tone electro-larynx machines, with spare batteries & chargers, so that fellow sufferers can always rely on the dept in times of need – as I did. As a bonus and a nice boost to the charity we got a nice piece in the Leicester Mercury for our endeavours!

electrolarynx

     No one could possibly understand what it means to have no verbal communication, it is truly horrendous so we sincerely hope that other laryngectomees don’t have to endure a world of silence for a moment longer than can be helped!

*****

October 2017:

Clement Clarke Airmed 1000Cracking morning as the good lady & I turned up at Glenfield Hospital to donate six (6) “AirMed 1000 Nebulisers, after hearing, last month, thaty they had a shortage of such! I had warned our respiratory “REDS” leader, Clair Chebbout, that we would be arriving but not the reason why – nice surprise for Claire and her ‘minder’

*****

Feb 2018:

Clement Clarke Airmed 1000

Another donation of 6 x Air1000 nebulisers but this time to Ward 17 at Glenfield Hospital. Ward17 have taken charge of lary/respiratory admissions so they badly need as many nebulisers as they can get their hands on – and “20-20 Voice” Cancer IS, most definitely, hands on!

*****

June 2018:

Clement Clarke Airmed 1000

Another 5 nebulisers presented to Ward 17 – I think they like us! I know just how important these little machines really are so we are always happy to oblige if we can. Carry on the good work girls!

                                                                                                     *****

June 2018:

We heard that GUYS Hospital in London were struggling to purchase a couple of Tru-Tone electro electrolarynxelectrolarynxlarynx’s so we immediately ordered a couple up and sent them down there. The SLT (Claire Twinn) was delighted with her surprise package. Larys have no need to remain speechless anymore! If we can help make a larys life a little better then we will !

 

July 2018:

A “Patient Monitor” was requested by the staff on Kinmonth Ward last October (2017), it finally arrived today, Feb 18th monitorafter 9 months of ridiculous red tape and I’m glad to say that it is staying on the Kinmonth Ward and will be a great help to staff and all those patients who return there after major surgery. The nurses can simply ‘hook them up’ to this monitor when they return from theatre and press a button every 15/30 mins to get all the necessary ‘obs‘ which will then be charted as per usual. “Helping Hands” strike again folks!

June 2018:

     It may not seem much to many but when you need a three-way mini dressing mirror so as to be Image result for pictures of 3 way mirrorsable to see into all the nooks & crannies of a ‘plugged up’ stoma and you simply cxannot locate one, frustration sets in. We had such a call a couple of weeks ago and were more than happy to pop one in the post to the needy sufferer. Very happy to hear that our ‘needy sufferer’ is now a very happy bunny and now has a super clean stoma! When “Helping Hands” can help…..we help!

July/Aug 2018:

We heard of an elderly gentleman who is a little afraid to go out as he can’t take his nebuliser around with him and be guaranteed to be able to plug it in where-ever it might be. A fully Image result for pictures of Omron mini nebunderstandable situation for if you are in need of a neb at a moments notice, believe you me, you need your neb. Hence, to allay the gentleman’s fears and also to ensure that can get out & about we ordered up an “Omron Mini Neb” from our friends at Evergreen Supplies. Now I use this item myself so I know just how brilliant it is – worth every penny and we are delighted to help another lary out where needed!

Aug 2018:

     We heard tell of a hospital ENT Dept that had a brace of laryngectomee examination rooms, which

Stoma Lamp
Stoma Lamp

made it relatively easy to cope with the growing numbers that we are. However, earlier this year one of the  high powered, mobile spotlights was unfortunately smashed and, seemingly, not to be replaced for whatever reason/s. We were approached, asked the question and a new special, intense beam, mobile lamp is on its way to the hospital. “HELPING HANDS” strikes again as we ensure that our fellow larys do not miss out! (The hospital only has the somewhat dubious task of replacing spent bulbs when the need arises!)

Sept 2018:

     We were absolutely delighted to provide St Johns Hospital, Livingston with 4 Electronic Boogie Boards so that troubled patients can communicate with each other on the ward. This is our first venture north of the border and we hope that it is the first of many for it matters not what part of the country it may be, we know that larys are lurking there! If we can possibly be of help to  them or the hospitals then we will endeavour to help. Stop Press: we have just sent up another 4, making 8 Boogie Boards altogether!

*****

Nov 2018:

Well folks, I think we have  created a first with this one! Our girls in the SLT Dept beseeched, beseeched I say, me for IOPI 2a newly created ‘tongue pressures’ gizmo as it would be of great use to all those Head & Neck sufferers that had difficulties with eating, drinking, swallowing, talking etc. Sceptical? yes I was but I was invited along to a talk/demonstation by the lady from IOPI Medical and I must admit that I was quite impressed by it all – and then the girls got me all to themselves: weren’t they lucky (?)! Their enthusiasm for this product was boundless so I promised them that I would put the matter in front of the Trustees & Jill Thorne (wife of our patron) who herself is a fully qualified SLT.

     Once Jill had launched into the benefits of this ‘tongue pressures’ gizmo the decision was unanimous, the deal done and the pricing stucture to be sorted out. Now these ‘gizmos’ are not cheap but at just under £5,000 we purchased a full set for our SLT girls and I do know for a fact that today (1st Nov) is the maidenIOPI 1 voyage. This is a weird request for a seemingly weird piece of equipment so we have asked the girls to keep records of performances by patients using this TP gizmo.

     Yet again folks I thank you sincerely for without all of you, out there where-ever you are, we could not continue this wonderful work of giving Head & neck cancer sufferers hope ! Thank you.

*****

We have an ongoing relationship with “super-soft” toothbrushes for patients suffering badly, post surgery, from oral surgery and other oral problems – 280 packs thus far!

                                                                                                     *****

Dec 2018:

     Probably not a matter that would concern many but some hospitals have wards where men are Image result for pictures of Wilkinsons sword edge razor packsbrought in with little or no toiletries, especially razors etc. Having been made aware of this situation we promptly ordered up 30 packs of Wilkinsons Sword Edge disposable razors and despatched them to the hospital ward in question. It’s one thing feeling unwell it’s completely another thing feeling unwell, unkempt & scruffy. Usually it is the staff themselves that dig deep and provide these little luxuries, so we just had to help them out with 30 packs 🙂

 

March 2019:

 A plea from Vanessa (Ward 17) at Glenfield Hospital as it seems that their supply of nebuliser’s is running short, so, could we provide them with another ‘half-

Clement Clarke Airmed 1000

dozen’ please? Well I assure you folks that the decision took less than 3 minutes from the Trustees – an emphatic YES Sireeeeee! They have been ordered, paid for and we simply await delivery of said equipment and I must say that we are delighted to be able to help the hospital out again! 🙂

 

June 2019:

We had contact from a lovely lady in the Midlands whose father is due a laryngectomy and was extremely worried about his pending loss of communication so we promptly ordered up a ‘Boogie Board’ and sent it over so that the gentleman could get used to using it BEFORE his operation!

August 2019:

Clement Clarke Airmed 1000

We have some great news as our friends in St John’s Hospital, Livingston have asked for help with nebulisers? Without further ado we contacted our supplier and ten (10) “AIR 1,000” nebulisers will be on their merry way to Scotland. What is most pleasing about this purchase is that St Johns cared for our dear departed friend Leo Thomson; he and his consultant Guy Vernham became great friends before the end. Therefore it is only fitting that Leo’s wife (Annie) and daughter (Jo-Ann) will be presenting all ten nebulisers to Guy Vernham and the ENT care nurses on behalf of 20-20 Voice Cancer.org. What more could we wish for eh ?

“Helping Hands”

(on a personal basis)

Dec 2017: Home health checking kit for a fellow laryngectomee, consisting of 1 x (finger) Oximeter & 1 x Digital thermometer. Image result for Pictures of an OximeterYou might smile at this gift but when you are home, and possibly alone, these two items are essential health monitor devices to spot any signs of decline…..and if doing so it gives the lary time to ring the emergency services and get help.

 

April 2017: Another small but simple & vital piece of equipment needed by an elderly laryngectomy Vicks Vapoursufferer was a ‘Vickes’ Warm Steam Vapouriser which compensated for extremely dry air and helped him regain a proper sleeping pattern. Being a laryngectomee ans having breathing problems is no fun at all and when this gentleman’s daughter emailed me for help…..well folks, we just couldn’t say no!

 

 

Sept: 2019

oximeterAgain we rise to the challenge as a lary find themselves without the proper checking kit; ie, the all important finger Oximiter & Digital digital-thermometerThermometer. We bang the drum continually that all Larys must have the checking tools for Oxygen levels & Temperature levels. As we all know, the first signs of infection need to be spotted for any ‘downhill slide’ needs to be averted as quickly as possible lest a stay in hospital beckons.

 

Oct: 2019

Another call for help from a lary struggling to remove  thick ‘gungy’ mucus from the lungs and bronchial tubes. Despite regular nebs etc the No photo description available.situation did not resolve itself so we sent an air humidifier/steamer so that the ‘long suffering’ could get some warm air into his stoma & lungs which will almost certainly release the recalcitrant mucus. It really is amazing what some warm steam will do in such situations for it not only helps to release the mucus but also lubricates the stoma & bronchial tubes as well. This, of course, makes further secretions easy to remove!

Oct: 2019

 A request for help from a lary struggling to communicate as her hospital can no longer provide the means/equipment. The lady had never electrolarynxheard of us but after a few ‘chat messages’ we assured her that we could provide her with a voice. So sad that this poor lady has been a recluse for the past 3 months as In our bookshe simply dare not go out without a voice-and believe you me when I tell you that I know exactly how that feels as people simply think you are either barmy, diseased or up to something or other when you cannot speak like normal people! Oh yes indeedy folks, it is not a pleasant experience at all. I have advised that this lady talks to her daughter as much as possible so as to get used to her ‘Tru-Tone’ and also communicating generally. It can be a bit daunting to start with but confidence soon grows with use.

Nov: 2019

Another request for a speaking device and this time from a nurse working within the medical profession who has seen what we do and

electrolarynx

sent in a request for one of her patients. Of course, all personal details are NOT made public, nor the hospital concerned, but we are concerned at the growing number of hospitals that are no longer able to provide a ‘voice’ once they have removed the cancer sufferers larynx for a person without that vital means of communication is, basically, a lost soul. In our book, everyone has the right to speech – even though cancer might decree otherwise on occasion! Good luck ‘X’, I am sure you will soon get the hang of being a Dalek!

Dec: 2019

Clement Clarke Airmed 1000

Looks like we are going to finish of 2019 with a bang as we have 2 hospitals crying out for nebulisers, so what do we do? We contact our suppliers immediately and send 6 ‘up north’ and 6 to a Midlands hospital. I’ll bet with this horrible cold, damp weather the respiratory wards are quickly filling up-hence the shortage of nebulisers.

electrolarynx

We have also had an enquiry from a member of the nursing fraternity asking if we could provide a patient with ‘a voice’ so we will be

No photo description available.

satisfying that ‘wish’ just as soon as we can my friends so a big thank you goes out to all of you out there for supporting this charity and ensuring that these lary sufferers are getting what they need to live as near normal a life as is possible. We have also sent a ‘steamer’ to another lary struggling to clear the airways so all in all it has been a busy old month for ‘Helping Hands’….. but this is exactly what this charity was set up to do!

Happy Christmas everyone!