This site uses cookies. Some of the cookies we use are essential for parts of the site to operate and have already been set. You may delete and block all cookies from this site, but parts of the site will not work.

 
4.jpg

 

News and events from the NALC archives

 

Notes from a busy AGM

15 May 2017

NALC welcomed researchers and engineers from Hull and Sheffield Universities who introduced a novel alternative for speech, created from previous recordings of the speaker, and paired to a smartphone app. NALC's fundraising efforts are bearing fruit, and we're looking forward to upcoming patient days in Scotland and Wales as well as the annual Cancer Focus event in Northern Ireland. 

More details on our NEWS page!

 

 

SPECIAL REPORT –

 

NALC 2014 ANNUAL LUNCH
at the Old Swan Hotel, Harrogate
7th September 2014

No sign of Agatha Christie, but a great day was had by all in any case – at the NALC Annual Lunch on Sunday 7th September, in the splendid (and sometimes mysterious) surroundings of The Old Swan Hotel, Harrogate. 

Agatha Christie used the Old Swan as her ‘retreat’ from the public gaze in 1926… and no wonder! It’s a beautiful old Hotel ‘away from the madding crowds’ in a demanding setting in Harrogate, and it proved the perfect venue for our 2014 NALC Annual lunch day


 

 NALC_Old_Swan_Hotel_Harro_SEP14.jpg

 


Around 70 Club Members and Families…  
 

Our turnout was roughly the same as last year, with Members from Clubs from all over the UK including Lothian, London, Belfast, Carlisle, Chesterfield and York. Our Dining Room was well set out, overlooking the elevated front grounds, not far from the beautiful Valley Gardens, bathed in lunchtime sunshine. 

As everyone found their designated tables, an air of excitement was building, as old friends renewed acquaintances, new friends were introduced, colleagues shook hands – and Officers greeted the various Clubs scattered around. Clubs with only a few attendees mixed well with other Clubs on their tables, exchanged names and started to feel ‘at home’.

 

NALC_Lunch_14_OFF_Table.jpg

 

Malcolm Babb, our President, started with welcoming everyone, and after a brief mention of our current Funding situation and our ‘Ribbon’ Project, handed over to our Honorary Treasurer, Alex McGuiggan, and Vivien Reed, our Association Secretary, who also welcomed everyone.

 

 NALC_2014_Lunch_Gen_Table_View.jpgNALC_2014_Lunch_Clear_Table.jpg

 

Then came Grace, and time to tuck into our starters of either Leek & Potato Soup, or Red Onion & Goat’s Cheese Tart, followed by a main course of either Pan Roast Chicken Breast with Roast Potatoes and Seasonal Vegetables, or Fillet of Halibut with New Potatoes, White Wine and Shallot & Mushroom Cream - or Wild Mushroom Stroganoff with Wild Rice! The Sweet choices consisted of Baked Lemon Tart with Raspberry Compote, Lime Cream, or Dark Chocolate Mousse with Orange Sauce and a Shortbread Finger. Delicious! 

NALC_20014_Lunch_Smile_Table.jpg  


During the meal, the room was buzzing with lots of chattering, laughing (when we could spasmodically find the ability to talk and eat at the same time)! But – judging by the general noise levels and clattering of cutlery – everyone seemed to be enjoying themselves. It was made all the nicer by seeing the view outside, and sun filtering through the large Dining Room windows.

 With the question of Fundraising now firmly set in our minds over the past few months, and with everyone together, it was a good time to talk about our ‘Ribbons’ fundraising project. (See below) Malcolm Babb explained that each Club is offered the opportunity to sell our colourful Ribbons to the public (who can donate any amount they want) and the Club can keep some of the proceeds, and return the rest to NALC. 

The whole project is linked to NALC’s Head & Neck Cancer Awareness Month, over October, and Flyers are given out to those who buy our Ribbons explaining the importance of seeing their GP if they have a persistent sore throat /cough – and demanding a referral to a specialist if things don’t improve. 

The Ribbons are supplied by NALC, in packs of 100 (kindly started by the Chesterfield Club, who worked tirelessly to get some Ribbons ready) who gave out some packs to other Clubs at their Tables. 


So – there’s still time for YOUR CLUB to ask Vivien at the Office for a pack of Ribbons, and a Leaflet explaining more. Don’t forget YOU can also benefit from part of the collection! 

The eagerly awaited NALC Raffle is a great part of the Annual Lunch, and this year was no exception! As soon as Vivien announced the sales of the Raffle Tickets, they were all duly snapped up by all and sundry, ready for the Big Draw. 

As in previous years, there were lots of interesting prizes, mainly donated by each of the attending Clubs, and many Winners, too!  

After much to-ing and fro-ing, proceedings slowly came to an end. We all said a fond farewell to Club colleagues, newly-found Members and associates, and then slowly  drifted out of the Dining Room and into the warm afternoon sunshine – either heading home, or for a quick explore around Harrogate’s many fascinating old streets, shops and beautiful Parks, to walk off our delicious lunch, and then home.

 


                              * * * * * * * * * * * * * *



All in all, another successful NALC Lunch, but maybe one with just a slight cloud hanging over the future … who knows where we’ll be next year ..?


One thing is certain: providing as many Clubs as possible dedicate some time for local Fundraising efforts, and Officers continue to work on cutting operational costs and recruiting the help of Trusts and other Funding Institutions, we all have a good chance of welcoming the future, and continuing all the great Services and Events NALC provides, all across the UK, for some time to come!                                        Andy Gage

 

Successful and well attended (over 100 Delegates) ‘Laryngectomee Day’ Events have taken place in Glasgow, Belfast, Nottingham (reported on our NEWS ARCHIVE Page) and Edinburgh. With some of these, we joined up with Countrywide Supplies, which proved to be a very successful move, in getting big numbers attending! More Events like this will be planned, hopefully starting with one in the Autumn.

 

Various Fundraising efforts have already been started/planned by some Clubs, including one where each Club contributes £2 a month (or a £1 a week by EVERY Member) to NALC. Others are thinking about Car Boots, Coffee mornings, Fete’s etc., etc. There's now also our online Donations Page ...

 

 

 
Further details:

 

This is an initiative where ALL Clubs can get involved, and make some money
for themselves, as well as NALC!
 


It involves selling attractive Ribbons, folded in a heart shape, to promote NALC’s services, and is to be linked to a Special NALC Head & Neck Cancer Awareness Month in OCTOBER…


 

NALC_Ribbon_s2.jpg

 


This is where we are so far:

 

  •  NALC provides ribbons - in quantities of 100, requested by a club (made up and with a safety pin).

 

  • Specially designed NALC Leaflets, raising awareness of Head and Neck cancer and some information regarding NALC are provided - to be given out when you're Fundraising, and when donations are collected. Leaflets will also include a donation Form, and space for you to put in your own Club’s details.

 

  • Clubs display and “sell” the ribbons during OCTOBER/NOVEMBER, seeking donations from friends, family, members’ social settings e.g. pub or club, local hospital or supermarket. (The Chesterfield Club will be asking local Rotarians/ Lions Club Members to help them). Clubs can decide where they choose to display ribbons. PLEASE NOTE: We will not be asking you to send us your collection monies until the END of NOVEMBER. So there's still time to do more collecting!

 

  •  Clubs may keep part of the funds raised if they wish - or pass all on to NALC.

 

  • Clubs taking part guarantee to return to NALC at least the cost of production (approx. £6 per 100 ribbons). Given average donations between 50p and £1, a profit between £40-90 can be expected per 100.

 


Advantages of participating in the NALC Head & Neck Cancer Awareness Week…

 


1.
NALC will be doing much of the work for your Club...

 


2. Clubs can contribute to the extent they feel able, by selecting how many ribbons to order, and their members can shape the activity to suit their physical capabilities – *some may not be up to standing outside a supermarket. (Ribbon Packs ordered do not have to paid for immediately - they can be paid for at the end of NOVEMBER).

 

*Indeed, some Members could just send us a donation and not do anything else… and now it's easier than ever to make a Donation to NALC - with our Online Donations Page! Click HERE for details.

 



That’s it at present, but we’ll be supplying more detailed information of how this ‘NALC Head & Neck Cancer Awareness Event’ went, after November.

 

Find out more now by contacting our NALC Office on
info@laryngectomy.org.uk
or Tel: 0207 730 8585

 


 


So please watch this space!

 

 

 

 * * * * * * * * * * * * * * * * * * *

 

Outside Events involving NALC Officers …

 

 

 

The Learn & Share Event –
Rowley Mile Conference Centre, Newmarket, Suffolk,
CBB OTF  - 11th June 2014.

 

 

 


This was really for members of Patient Support Groups & Volunteers, affected by long-term conditions, and was mainly about improving Patient care over many areas. It was packed with Clinicians, Carers and Hospital Patient Support Groups, and was extremely well organised.

 


Andy Gage
went, not only because of his recent work on the Macmillan Patient Experience Board, but also because part of the afternoon session featured Fundraising…

 

 

 

  • This session proved extremely worthwhile, because it was presented by one of the Fund Managers from the ‘Big Lottery Fund’, which give grants in various sections - from ‘Community Grants’ of £250 - £10,000 to the ‘BIG Lottery Fund which grants from £10,000 to £500,000 to organisations ranging from small local groups to major National Charities (like NALC).

  • In this presentation, the Manager gave out a lot of helpful information about ‘How To Apply’, and what they expect in Applications, and what they need. Andy had a chance to speak with him afterwards, and get his email address -  and he seemed pretty positive that we might possibly be considered for either ‘Community Funding’ or ‘National Funding’. We’ll obviously be chasing this up shortly. 

 

 

 

Other Potential Funding Areas include specialist head and neck trusts recommended to us by leading Clinicians. And we’ll be following up information on the selected main Trusts, with the help of Macmillan  –  and also those shown on an online database of Charitable Trusts we have subscribed to, in order to enable us to find one suitable for each Application we make.

 

 
* * * * * * * * * * * * * * * * * * * * * * * * * *

 

 Eastern Region Laryngectomy Conference

 

Held at Cambridge, 30th May 2014 at the Hexagon,
Frank Lee Centre, Addenbrooke’s Hospital,
Cambridge CB2 OQQ

 

 

 

 This was a big, well organised event at the sprawling Addenbrooke’s Hospital site in Cambridge, and was well attended by Clinicians, Nurses, SLT’s and Doctors from all over the region – with Speakers from the UK, Holland and Switzerland - and of course, many Laryngectomee’s!

 

 

 

Malcolm’s NALC Presentation: Our President, Malcolm Babb was invited to give a Presentation and Talk on ‘First Aid & Resuscitation for Laryngectomees’ and Andy Gage assisted on stage. Malcolm concentrated on describing the three situations that cause vulnerability for Laryngectomee’s:

 

 

 

Calling the Emergency Services (and how they give you oxygen – often making the mistake of applying to the mouth & nose - instead of the Stoma!); Admission to Hospital (in a non-ENT Ward) where Nursining staff are not experienced in treating Laryngectomee’s; and receiving ‘hit & miss’ Community Medical Services/Nursing Support, upon recovery at home.

 

 

 

The Presentation went well, and it was surprising to see the reactions of some non-ENT staff. (That shows the Talk was effective in making them realise the situation about neck-breathers!) This was highlighted by Malcolm and Andy citing many examples of events which could have been life-threatening, because of not resuscitating via the Stoma! 

 

 

 

 Other parts of the Conference programme included Talks on:

 

  • Levothyroxine: Hypothyroidism after Laryngectomy – involving problems with the Thyroid gland, and how our Thyroid Hormone Levels can be adjusted with the right amount of Levothyroxine – and also how and when to take Levothyroxine tablets: 1st thing in the morning, with water (not ½ an hour after getting up, with a cup of coffee!)

 

  •   How to get the best out of your Doctor: 6 tips that ensure you get a good ‘service, including taking your medication list with you, planning what questions you want to ask, and NOT being timid about asking them!

 

  • Smell Tests: apparently, in Holland, the Doctors/SLT’s test a patient’s strength of smell, before Laryngectomy surgery, and have treatments to aid the recovery of their smell afterwards. Their aim is to restore at least 95% of smell within around 6 weeks of recovery!

  • Singing to Improve Voice: Another help for Laryngectomee’s, and not widely publicised, is learning to breathe the way Opera singer’s do. Dr Thomas Moore, who runs Singing Training sessions at Addenbrooke’s, for H&N patients, gave a fascinating presentation on breathing the way singers do, and played some audio clips of a woman Laryngectomee talking without singing training, and then 6 weeks’ later, after singing training. The result was impressive; her voice was much louder, and clearer! The main aim of the Singing Training Sessions is not necessarily to learn to sing again, but to re-form your breathing, and therefore improve your speech.

  •  Breathe like Children: Dr Moore also said that Laryngectomee’s naturally breathe better than non-Laryngectomee’s, and their breathing becomes  similar to the way children breath (best way, apparently). And speaking: as a Laryngectomee, if you think like you’re talking to children, your voice will be clearer!

 

 

 

 Overall, the Eastern Region Conference provided much food for thought, and showed what (and how much!) Medics in other Hospitals – and those abroad – are doing to improve the Laryngectomee's daily life!

 

 
 
* * * * * * * * * * * * * * * * * * * * * * * * * *

 

Also see a brief Report on our General Committee Meeting – 7th July - at St Peter’s Eaton Square Church, London SW1W 9AL - and also our 2015 Dates for the NEXT GENERAL COMMITTEE MEETINGS – on our EVENTS’ Page.

 

-----------------------------------------------------------------------

 

For once, our President, Malcolm Babb, was not able to attend our 7th July General Committee Meeting, because he had been invited to be a Speaker at a very prestigious Event ...

 


Malcolm’s presentation at the -

 

Launch of the Global Tracheosctomy Collaborative,
at the Royal College of Surgeons
(where over 100 Doctors, Nurses, and Surgeons were attending).

 


The aim of this GTC Launch was to improve the care of Neckbreathers (like most of us) - in and out of Hospital. Malcolm was there to promote and draw attention to NALC’s Educational Programme, and the
other services NALC provides…

 

The presentation was well received, and Malcolm also had the opportunity to have a large input into a Patient and Families Session later in the day, which involved international contributions via webcams. There were over 200 present, representing around 100 institutions/trusts. All present - and indeed those watching online - will have learnt about NALC's history in patient safety (NPSA briefing 10 years ago) and the aims of our Education Programme.

 


Our cause for improvements to Laryngectomee treatment and care at NALC is very similar to the Tracheostomee Community’s cause, which is increasing in size, and we have an interest in the problems they face e.g. hospital discharge being delayed due to problems in getting suction/nebuliser equipment.

 


Another Speaker at the GTC was Stephen Hawking. His talk was a very moving experience for all present. He confined his comments (pre-recorded using the technology he employs for all communication) to his experience of needing a tracheostomy and some years later, more surgery. We learnt of the pivotal role played by one of our Patrons, David Howard, who he met on a flight from Greece. He had many problems with aspiration after eating, and David presented a solution. Subsequently David carried out a Laryngectomy.

 


The host for the day, Professor Tony Narula, is based in London and works closely with Martin Birchall. He advised Malcolm that Martin would have been present had he not been abroad, but he will learn of the events of the day and no doubt of NALC's involvement.

 


So it's good to hear that NALC's existence and services are being well promoted,
wherever and whenever possible!

 


* * * * * * * * * * * * * * * * * * * * * * * * * * *

 

SPECIAL REQUEST:

 

 Speech Valve Services Survey - Can You Help?

 

One of NALC's medical advisors, Professor Patrick Bradley, has recently had an article published detailing the results of a national survey he carried out with the assistance of colleagues from around the country.

 

 

 

The survey asked Speech Therapists or Nurse Specialists about the services they provide to Laryngectomees to maintain and replace speech valves and their opinions of the service. The findings are given below:

 

 

 

  • There is considerable variation around the country:
  • The clinicians who provide services at hospitals, which are specialised surgery centres, are happier with the service they are able to give, than those at other centres.
  • Many trusts do not have a written care pathway for dealing with emergency Laryngectomee situations. For out of hours, it is A&E rather than ENT wards that now increasingly handle the provision.
  • It is felt there is a need for more training for out of hours’ staff on issues such as leaking valves, mucus plugs and aspiration.

 

 

 

How are things for you?

 

NALC would like to hear your views on the service you get; whether it is excellent, or perhaps needing some improvement. The process of centralising services is continuing, and we are keen to find out if this is causing extra problems for Laryngectomees.

 

 

 

Please let us know, by either contacting us in writing, or telephoning our London office, at - Vivien Reed, Association Secretary, NALC, Lower Ground Floor, 152 Buckingham Palace Road, London SW1W 9TR.  Tel 020 7730 8585.

 

Alternatively you could send an email to info@laryngectomy.org.uk  - or click on the Website 'Contact Us' Page, on the right panel.

 

Thanks for your help.   Malcolm Babb, President. 

 

* * * * * * * * * * * * * * * * * 

 

For Latest News from the Clubs …

 

Please see the latest edition of our CLAN Newsletter - on our 'Newsletter' Page - or click here.

 

 

 

* * * * *  * * * * * * * * * * * * * * * * * * * * * * *

 

Club Feedback Request

 

We’d love to hear any news/updates about your club activities, what you’ve done recently and what you’re planning for this Autumn, and Winter/Spring 2015! Any pictures would also be welcomed!

 

If you send us your news you WILL be mentioned!

 

Please email us your news to our Head Office in the first instance – at  info@laryngectomy.org.uk 

 

AND - THANK YOU - to all the Clubs who recently sent us updates on activities, and some with Photos... Much appreciated!  (See the latest issue of CLAN for details).

 

 

 

* * * * * * * * * * * * * * * * * * * * * * * * * * * *



Continuing News: The Throat Cancer Foundation

 

With our NALC Website our aim is always to provide useful, relevant and interesting information of benefit to all Laryngectomees, far and wide, and also to foster links and exchange information with other like-minded online services. Because of this, we’re pleased to add a link to the Throat Cancer Foundation, at http://www.throatcancerfoundation.org/ - and provide a brief introduction as to what they’re doing…

 

 

 

Support …

 

The Throat Cancer Foundation (TCF) was founded in 2012 by Jamie Rae, a Scottish businessman and oropharyngeal cancer survivor. Jamie was concerned at the lack of resources and support available to people affected by cancers of the throat and set up the Foundation to address this problem.

 

Today, TCF is dedicated to providing this support, and offers information, support and community to all those who are affected: patients and their loved ones, and wants to ensure everyone has access to the most up to date information about their illness, their treatment and their recovery, as possible.

 

 

 

Research into reducing future throat cancer cases…

 

Jamie has recruited a team of leading cancer experts to guide and support our work. Have a look at our team page to see some of our supporters. In addition to this, TCF is working to reduce future cases of throat cancer. This includes funding research into prevention and cure, advocating healthier lifestyles and campaigning for universal HPV vaccination.

 

 

 

HPV – its threats and how they could be eradicated …

 

‘HPV’ stands for Human Papillomavirus Virus, which lives in the skin, and can be treated with a vaccine. Currently, this is mainly given to protect girls against cervical cancer, but it has recently been discovered that HPV can also affect the throat, notably with Oropharyngeal cancer. And – if current trends continue, experts say that the number of Oropharyngeal cancer cases could exceed cervical cancer by 2020…

 

Have a look at TCF’s  HPV and campaigning sections for more information about their work to try and prevent cases of throat cancer.

 

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

 The NALC & Countrywide Supplie
Laryngectomee Day in Nottingham
-  26th February 2014 -

  … was a Merry Day indeed!

 
No sign of Robin Hood on the Registration list, but non-the-less, we had a terrific turn-out of over 135 guests at the Crowne Plaza Hotel, Wollaton Street, Nottingham on Wednesday 26th February 2014, for the East Midlands Laryngectomee Day gathering.



Welcome all


Welcoming us all to the event, our President, Malcolm Babb opened the proceedings, by expressing his pleasure at seeing such a large turnout.



Malcolm hoped all those present who did not have the benefit of a local Larygnectomee support group would be able to get all the information they wanted, during the day, and talked briefly about the benefits of joining a Laryngectomee Club, and the great help and support they can provide.  Then, Countrywide Supplies were thanked for their support for the event, and last but certainly not least, Vivien and Kerry for all their work in organising the programme, and working tirelessly in the London Office.



Head and Neck services

Following Malcolm, Marie Rogers, a Head & Neck Nurse Specialist gave a very interesting and informative presentation about Laryngectomy surgery, the changes most Laryngectomees go through after the operation, various ways to cope with this ‘change of life,’ with specialist  aids and helpful equipment, that can make things more bearable. Marie also touched on some of the current and new equipment available to help with stoma cleaning, looking after voice-valves, and gave some useful tips on generally keeping as healthy as possible, and leading as full a life as possible.

 

Benefits, PIP and Form-Filling …

Next up was Chris Bissett, a Benefits Advisor, who really has his work cut out at present, with all the Government changes involving people with disabilities! Chris talked at length about the work of the various Maggie’s Centres spread across the UK: https://www.maggiescentres.org/ including the Centre in Nottingham, and the excellent work they do in helping people claim the benefits they need and deserve.

 

S
tand up for your rights

Chris explained in detail all the new ‘PIP’ legislation, taking over from the DLA for many people. Part of the PIP application process is very unfair to Laryngectomees, as it’s based on a telephone interview, so Chris explained the many ways one can get through this, what to understand about the questions, and how to answer. A Laryngectectomee with difficulties using the telephone can insist on a home visit by a Government Benefits Advisor, but even that can catch you unawares.



Cover everything

It’s important to remember everything that you have even the slightest difficulty with, from problems getting up, dressing, ‘fixing’ your voice for the day (Stoma cleaning, etc.,) to having (or recently had) chemo and/or radiotherapy (where you should be in a support group in any case) to get over. Any mobility problems, restricting how far you can comfortably walk, and breathlessness - all should be reported. 



Chris also explained that the new PIP legislation affects everyone up to age 65. For those over 65, the old DLA system still holds, and this is unlikely to be changed in the foreseeable future.



A SLT from ‘over the border’...  

Next up was Eryl Evans, a ‘semi-retired’ Speech and Language Therapist, who originally trained at the Cardiff School of Speech Therapy, and then practised at Swansea University Hospital, after a spell at the Mayo Clinic in America, after which she ‘never looked back.’  Eryl became one of the first Welsh SLT’s in 2001.



Laryngectomee progress through the decades

During a terrific up-beat presentation on ‘Laryngectomy and its issues’ through the ages, from 1982, when the first speech valves were tried out and used, to the year 2000, when chemotherapy and radiotherapy became a regular treatment option, Eryl made her presentation even more interesting by relating the years where Laryngectomee issues progressed, with what was happening in the UK at the time.

 

From Beatle mania to platform heels, and the first Moon landing to Punk Rockers (and dodgy fashions) there was a lot to connect to.

 

To the future – and beyond …

Then talking about today – and the future – Eryl ended by reminding us that there are a lot of new speech valves coming out, but only one is right for the individual. Also, Wales is leading the way by already offering treatment and advice via videoconferencing. And yes, Larynx transplants and stem-cell treatments are the future, but we have a way to go yet, before they become fully feasible.

 

Fire!

Then it was the turn of Andrew Williams from the Nottinghamshire Fire & Rescue Service. An experienced Fireman, Andrew gave us the startling news that in Nottingham alone, there are on average 700 call-outs for fires, every year.  He then gave us an extremely useful presentation on the main reasons (or devices) that can cause fires. Apparently, battery chargers, toasters, mobile-phone chargers, and ‘tea-lights’ (because the metal bases get too hot) are some of the main things that cause household fires.

 

Good advice  

Andrew then said that most fires are likely to happen at night, and 10% of fires are caused by cigarette smoking, and these also cause 75% of all fire deaths. So –

  •  ensure all cigarettes are put out properly (water in ash trays helps)
  • electric plugs are taken out of wall sockets, after being turned off

  • all internal doors are closed, when you’re out of the home, and/or at night

  • have a smoke alarm on each floor of your home.

 

 Daunting stuff, but it could save your home, and yours and your family’s  life!

 

A Laryngectomee journey …

Next up, Malcolm Babb (with his Chesterfield Laryngectomee Club hat on) and Ray Mountain (Chair) talked about ‘A Laryngectomee Journey’ – starting with their early Laryngectomee experiences. Ray said that in his experience, most GP’s don’t understand a Laryngectomee’s situation, and in any case only allow about ten minutes consultation in their surgeries. His GP also didn’t realise that he breathed through his neck!

 

The importance of our Clubs

Other points included: in both Ray and Malcolm’s experiences, people generally didn’t want to listen to Laryngectomees (either through ignorance, impatience or embarrassment). That’s why our support groups and Clubs are so vital in strengthening our cause, and giving members the chance to practice speaking, and feel together in furthering the cause, and having the chance of leading a better life.

 
Both Ray and Malcolm ended on a positive note that we all should practice being assertive, and creative in the way we solve our problems, and live life – to the full!

 

Club News

As time was running out, there was then a brief update from the Doncaster Laryngectomee Club, and then the Central London Laryngectomee Club. Both spokespeople spoke briefly about progress, events and plans.

 

Then it was the turn of our Suppliers and Manufacturers to present their products/news, including some from Kapitex, Independence Products, Spirotect, Platon Medical, Inhealth, and of course, Countrywide Supplies.

 

Tell us what you’re doing …

Our Webmaster, Andy Gage, also reminded everyone that we’d welcome news from all of the Clubs out there, and can write up your news on this Website, and also advertise a special event or national project you’re involved in. So get emailing Andy at andy.gage18@btinternet.com or Vivien at info@laryngectomy.org.uk !


Finally, what Laryngectomee Day would be complete without our Association Secretary, Vivien Reed’s now famous ‘end of day’ Raffle..? As usual, many prizes were on offer, and not many people went home empty-handed!

 
* * * * * * * * * * * * * * * * * * * *

 
DECEMBER 2013

We’d like to wish all our Club Members, their Families, and all Visitors to our Website -

 Best Wishes for a Happy & Healthy New Year!

 

In true seasonal NALC-style, our Officer’s Christmas Lunch went ahead recently in a London restaurant near our offices, and we all raised a glass in memory of a busy 2013, and to what’s going to be an even busier year to come, in 2014.

 

                                   

 

Again, in true traditional style, we all pulled our crackers, and found some quite good jokes inside. Here are just a few:


‘Where do cows go on Saturday Night..?      
 The moo-vies’

Q: A cowboy rides into town on Friday, stays 3 days and leaves on Friday. How did he do it?           
A: 
His horse is called Friday!

‘What do you get if you cross a snowman with a vampire..?     Frostbite!’

‘What seven letter word has hundreds of letters in it?      A postbox’

‘What’s brown and creeps around the house..?     Mince Spies!’

‘What do you call two happy mushrooms..?     Fun guys!’

 

-----------------------------------------------------

Meanwhile, take a look at our December edition of CLAN - available NOW, on our 'Newsletter' page! It’s got lots of important news to find out about, and has already been posted out, but it can also be read, downloaded, and printed - straight from our ‘Newsletter’ Page - right now!

 -----------------------------------------------------

REPORT

SEPTEMBER 2013 (1)

A Good Turnout for the Belfast Laryngectomy Support & Information Day  

Wed 25th September 2013, at the Malone Golf Club, Belfast  

 

The Belfast Laryngectomee day was held jointly by Cancer Focus and NALC in the Malone Golf Club on the outskirts of Belfast on September 25 2013.

 

In total over 40 laryngectomees including their carers attended this event.  The venue was superb and very picturesque.

 

We had valuable inputs, including:

  • A talk from an ENT surgeon on issues affecting laryngectomees
  • CNS nurses gave a revealing talk on refreshing, and how to use the suction pump
  • Patient Client Council talked on how they represent and campaign on patient concerns, plus -
  • Citizen’s Advice Bureau on welfare reforms, and -
  • Laryngectomee supplies representatives presented the latest devices and equipment.

 

The event ended with a lovely hot lunch at the golf club.  Everyone in attendance were very complimentary of the content of the event and were looking forward to the next one.  

 

* * * * * * * * * * * * * * * ** 

REPORT:

 SEPTEMBER 2013 (2)

A ‘Right Royal’ Afternoon in York

 - September 1st – at the NALC 2013 Annual Lunch at the
Royal York Hotel

 

Where better to enjoy a splendid 3-course lunch, on a beautiful sunny day, in an amazing historic City, and in the sumptuous surroundings of the Royal York Hotel…

 

As we all greeted each other, and gathered in excited anticipation in the Hotel lobby, drinks in hand, and then in our Dining Room’s reception area, we could just see the finishing touches to our tables being laid out by a small army of  extremely busy Dining staff, who were checking diligently to see that everything was in order.

 

 A Good Turnout …

Then, given the word, around 70 of our NALC Club Members and some of their families, were gently ushered to their designated tables, all tastefully arranged around the grand Dining Hall, overlooking the ‘best side’ of the Hotel, and its beautifully kept gardens.  

 

 The atmosphere built slowly, as old friends renewed acquaintances, new friends were introduced, and colleagues shook hands – and Officers greeted the various Clubs scattered around. Club Members had come from all over the UK, including Amersham, Belfast Calderdale, Carlisle, Chesterfield, Harrow, Lothian, York (whose Members didn’t have far to come!) and London.

 

 A Delicious Meal …

After a brief ‘Welcome’ and introductions from our President, Malcolm Babb, and then from our Honorary Treasurer, Alex McGuiggan, and from Vivien Reed, our Association Secretary, we said Grace, and then tucked into our starters of either Leek & Potato Soup, or Chicken Liver Parfait, followed by a main course of either large slices of Roast Topside of Beef, with honey-glazed root vegetables (and Yorkshires, of course!) or delicious Baked Salmon, or Wild Mushroom Risotto.

 

 By this time, the room was buzzing with lots of chattering, laughing, and smiling faces of Club Members, all tucking in and spasmodically finding the ability to talk and eat at the same time (as is our want) but – judging by the general noise levels and rising heat – everyone seemed to be enjoying themselves (and not to mention, for some of us, the drinks) very much.

 

 Room For Sweets – And Time For The Raffle …

The Sweets choices of either Strawberry Ice Cream Parfait or Baked Apple Delice Tart were whisked in as we finished our ‘mains’, and then, after a few pauses for breath, Vivien announced the sales of the Raffle Tickets, which were duly snapped up by all and sundry, ready for the Big Draw.

 

 I would think by now these after-event Raffles are now a famous – and eagerly-awaited – event in any NALC Club’s gathering. As in previous times, there were lots of interesting prizes, mainly donated by each of the attending Clubs, and many Winners, too!

 

Until Next Time ...

As the proceedings slowly came to an end, we all said many fond goodbye’s to Club colleagues, newly-found Members and associates, and then gently drifted out of the Dining Room and into the Hotel Reception – either heading home, or for a quick explore around York’s many fascinating old streets and buildings, to walk off that delicious lunch, or for a quick nap somewhere!

 

All in all, another successful NALC Lunch event! I think most of us went home with many happy memories of the afternoon, a promise to keep up with new friends met there, and with a resolve to definitely attend next year’s event – wherever it takes place!

 

Andy Gage.                                                                                                            

* * * * * * * * * * * * * * * * * *  

(Photos of the lunch should appear in CLAN).

 

 * * * * * * * * * * * * * * * * 

JUNE 2013

A Great Day ‘North of The Border’ - 

at the NALC Scottish & Northern Meeting, Glasgow - 25th June 2013 

 

Anyone walking in from Glasgow’s Grand Central Station into the Grand Central Hotel’s foyer on the morning of the 25th June could have been forgiven for thinking that the hotel had been taken over by Laryngectomees!

 

And they’d be partially right. For this years’ Scottish & Northern Laryngectomee Clubs Meeting was taking place in one of the hotel’s many Conference suites, and with ‘standing room only’ for part of the time.

 

New Products …

Taking time to visit the many Supplier’s Stands was well worth it at the start, as reps from many of the major Laryngectomee Equipment companies were there, including Forth Medical, Kapitex, Platon, Insight Medical Products and Insight Technologies, with new products to show, like the new Blom-Singer Dual Valve, and the Provox Vega voice prostheses, and other advanced equipment.

 

Busy Agenda  

The main proceedings started with a Welcome from Ivor Smith, a Vice President of NALC, and then Andy Gage, another Vice President, and also NALC’s Webmaster, talked about how the Website (currently getting over 100 visits a week) is the online ‘voice’ of NALC, for news and announcements. One of these – to be published shortly – could herald a major breakthrough in Laryngectomy surgery and treatment, and change the outcome of newly-diagnosed Larynx cancer patients with a ‘new dawn’ of advanced treatments.

 

Potential Laryngectomy Breakthrough…

This has all come about through a 2.8million Award granted to one of NALC’s most respected Patrons, Professor Martin Birchall, chair of Laryngology, and his research team at the UCL Ear Institute, and the Royal National Throat, Nose and Ear Hospital. The Award will go towards a research project called RegenVOX, involving the preparation of a reconstructed Larynx, made from the patient’s own stem cells, plus a donor Larynx. Chemicals will remove the cells from the donor Larynx, leaving a ‘shell’ on which the stem cells from the recipient can be grafted, thus bi-passing the common rejection problems normally associated with other transplants – and enabling the formation of a new Larynx.

 

Instead of the current Laryngectomy post-op problems - which generally involve speech, breathing and swallowing problems, and little taste and/or smell left – these could be a thing of the past. The possibility of giving newly-diagnosed Laryngectomee patients their voice, smell and other functions back, and re-convene their pre-op quality of life, is extremely exciting. And it could be done on the NHS too!

 

Watch www.laryngectomy.org.uk for further news…

Professor Birchall plans to start the first transplants in a years’ time, with 10 new patients, and these will be monitored over 2 years to prove the safety of the work. More details coming shortly – to be published on our Website.

 

More Agenda News …

Following the above announcement, it was Macmillan’s turn, with Alan Gow, Macmillan’s Involvement Coordinator, talking about the work Macmillan is involved in at present, including helping cancer patients experience better treatment, and clinicians a greater understanding of an individual’s care and wellbeing needs, in hospitals across the UK. Other projects involve enabling patients to have ‘a greater say’ in their treatment in general, by expanding the Patient Experience Committee groups in many areas, and helping with research projects, where possible.

 

The Benefits Question, and Fire & Safety…

Amanda Gallagher, an experienced Benefits advisor, spoke about the new UK Government legislation affecting many of us at present, with the changes to the Disability allowance, and the new ‘PIPS’ coming in, with new criteria for the under 65’s (different rules apply in Scotland). Amanda explained some of the ins and outs of the new system, how and where to get help, and what one might expect to happen, and afterwards arranged to speak with individual delegates wanting more info.

Fire and Safety was handled by some great Scottish Fire Officers, including their Leader, Ian Thomson, who together told some hair-raising – and some hilarious – stories involving how fires can start, and what can happen in fires, and how to be extra vigilant in your home, with electric and gas appliances (and barbecues, etc.,) and gave some valuable advice that could save lives in an emergency. 

 

The Throat Cancer Association…

Next, Ewan Lumsden, Digital Content Manager gave us an update on the Throat Cancer Foundation (TCF) which was founded in 2012 by Jamie Rae, a Scottish businessman and oropharyngeal cancer survivor, who was concerned at the lack of resources and support available to people affected by cancers of the throat. Today, TCF is dedicated to continuing to provide this support, and offers information, support and community to all those who are affected, both patients and their loved ones.

 

Research into reducing future throat cancer cases…

Jamie has recruited a team of leading cancer experts to guide and support our work. Have a look at our team page to see some of our supporters. This includes funding research into prevention and cure, advocating healthier lifestyles and campaigning for universal HPV vaccination. ‘HPV’ stands for Human Papillomavirus Virus, which lives in the skin, and can be treated with a vaccine. Have a look at TCF’s  HPV and campaigning sections for more information about their work to try and prevent cases of throat cancer.

 

The turn of the Clubs

Brief presentations from attending NALC Club Committee Members included one from Ann Muir, Information & Support Officer at the Speak Easy Cancer Support Group. This Lanarkshire Club represents Laryngectomees and various different cancer patients, and is involved with helping to inform people about getting benefits and allowances; also research into patient care, and Laryngectomee issues. The Club is also involved with Macmillan Cancer Support, dealing with Insurance for Laryngectomees, and has also succeeded in gaining many Fundraising Awards to help with their work. Visit their Website at www.speakeasylaryngectomee.co.uk for further details.

Other Clubs reporting included the Central London Laryngectomee Club, Chaired by Andy GageSee latest issue of CLAN for further details…

 

Manufacturers, Lunch & Raffle…

Finalising a very busy but productive morning, the various Laryngectomee Equipment companies gave brief presentations of their products (see ‘New Products’ above) which were all available to study and get further details on, in the well-stocked display stands in the Supplier’s area.

 

There followed a fantastic spread of lunch sandwiches, salads and other goodies, and the Grand Raffle, organised by Vivien and Kerry from NALC's Head Office, which – as usual – offered a glittering array of useful Prizes to win.

 

All in all, a busy, well attended day, with lots to take in, learn from, and enjoy. As we all slowly departed from the palatial surroundings of the Grand Central Hotel, the nearby Rail Station was filling up with Police and Security Guards – I thought, there to give us all a ‘Grand’ send-off - but no; they were awaiting the imminent arrival of Robby Williams!

 

Oh well, at least we took over part of a Rock-Star Hotel for a while!

 

 

*************************************************

MAY 2013

Great To See You – At our 

NALC AGM

- held on 20th May 2013 at St Peter’s Eaton Square Church, London SW1W 9AL

 

For all those who attended our 2013 Annual General Meeting – a big ‘Thank You’ for coming! We hope you enjoyed the afternoon, caught up with old friends and colleagues, met some new faces, discovered what’s going on with other Clubs, and NALC News in general. AND hope you enjoyed the great lunch, thanks to Vivien and Kerry (and Kerry’s Mum) and other helpers! A total of 31 Laryngectomee Club Members attended.

 

For those who were not able to attend…

Sorry you missed a very enjoyable and rewarding afternoon, but hopefully we’ll see you next time… Meanwhile, here’s a quick run-down on what happened, starting with President Ivor Smith’s Introductory Welcome:

 

President’s Report: Requests keep coming …

Ivor was pleased to announce that requests from Hospitals and other Clinical Institutions for NALC Presentations continue to come in at quite a pace, with Northern Ireland showing a particular interest. Many enquirers also request to visit a local Laryngectomee Club in their area, to find out more about Laryngectomee issues, and how the Club is helping to improve the lives of its Members.

Ivor then thanked all the current NALC Officers for all their hard work throughout the past year, including Alex McGuiggan, our Honorary Treasurer, Malcolm Babb, Tony Smith and Bert Culling, our Vice Presidents, and also Ian Honeysett, our tireless CLAN Newsletter Editor, who has now been contributing his publishing and editing expertise for over 30 years!

The Thank-You’s certainly wouldn’t be complete without a big vote of appreciation for all the hard work of our Secretary, Vivien Reed, and Kerry, her Assistant in the NALC London office. Meanwhile, Ivor confirmed that he was stepping down as President for this new term (but certainly not leaving the Committee – see ‘Secretary's Report’ below)…

 

Secretary’s Report: Lots going on …

Vivien also reported lots of interest in NALC’s Powerpoint Presentations around the country; also NALC’s Literature and free DVD’s are being well received. And – relatively new - is the NALC Video (You-Tube) channel, and our new Website.

Work involving NALC becoming part of a new Constitution, following guidelines from the Charity Commission, is one of the key items on this year’s Agenda. This will give us more protection as a Charity, and other benefits, but will not in any way affect the aims of NALC. (Further details to follow later).

Meanwhile, other well-deserved ‘Thanks’ went to Ethel Culling and Jean Fraser, who amongst other things, have dedicated so much of their time to providing extremely valuable information to individual Laryngectomees and Institutions on the Government’s new Benefits system, which is impacting many people’s lives at present. Without Ethel and Jean’s hard work, many people would not know where to go to get essential information on their rights.

Thanks were also expressed again to Ian Honeysett, our CLAN Editor and Producer, and alsoAndy Gage, who worked on the content copy – and helped in the setting up – of our new NALC Website. Andy continues to write, edit and update the site.

And – last but by no means least – heartfelt Thanks to Bert Culling, who is ‘semi-retiring’ from NALC’s Committee, after many years of hard work and great service. But we’re not letting Bert off lightly and, with his vast experience of Laryngectomee issues, and endless trips around the UK spreading the NALC word, Bert’s agreed to still be ‘on-hand’ for various Presentations and visits where possible.

 

New Committee Election Results for 2013 

Following Voting papers being sent out in March, and seconding taking place at the last General Meeting, the following Members were voted onto the Committee of Officers:

 

Malcolm Babb is now our new President., Alex McGuiggan was re-elected as our Honorary Treasurer.,

Ivor Smith becomes a Vice President., Tony Smith (no relation!) is also re-elected as a Vice President (his 4th Year)

and Andy Gage becomes a new Vice President, as well as continuing as Webmaster.

 

New President’s Report: an Exciting Year ahead…

Our new President, Malcolm Babb (who was a Vice President last year) has been involved with many Laryngectomee causes and programmes over the past years, and is currently representing NALC at a variety of National Groups – increasing the awareness of Laryngectomee issues, and being involved with various cancer Charities and research initiatives in the NCIN group, which looks into details collected from various Hospitals.

 

The Leading Head & Neck Group in Laryngeal cancer issues …

Malcolm was pleased to report that NALC is leading the way in supporting H&N research and improving treatments, and is well respected in the medical profession. NALC’s status will also improve with the NALC You-Tube channel which Malcolm set up himself, and also the Website, which he worked on in the building process.

 

Good news is that the Website currently attracts over 100 visits a week, from all over the world,

and the You-Tube Video clips are getting 50 downloads a week, reaching more people than ever before!

We also have a lively Facebook Page too!

 

Malcolm has also been working tirelessly on setting up a more beneficial *‘Establishment of Constitution’ for NALC and its Members, as touched on by Vivien. Another initiative is to secure a workable (and affordable) Insurance Policy for all neck-breathing and Laryngectomee Swimmers.

 

Honorary Treasurer’s Report:

Next up, our Honorary Treasurer Alex McGuiggan reported on NALC’s finances for the year, which can be found in the NALC Annual Report 2012. As well as handling all NALC’s Accounts, Alex continues in his ‘semi-retired’ state, as a Maths and IT Lecturer, also as a NICaN Board Member, involving attending meetings with the Department of Health, discussing priorities for the future of cancer care and prevention. This is as well as regularly presenting NALC’s Education Programme to University of Ulster, and Canterbury Christ Church students, and trainee paramedics in the Ambulance Service in N. Ireland.

Another ‘job well done’ for Alex is that through his involvement with the N. Ireland Cancer Network, and setting up a Tumour Group, which is now part of a Cancer Focus Group, he’s been invited as a guest Speaker to present the Laryngectomee cause to the Northern Ireland Government at Stormont. A well-deserved accolade for all his hard work..!

 

Vice President’s work …

Tony Smith, now in his 4th year as a VP, spoke briefly of his recent work involving giving talks at Charing Cross Hospital, also Mount Vernon, and at UCLH – talking to Patients, SLT’s and Clinicians about the effects of Laryngectomy, and understanding Laryngectomee’s  issues and needs. Tony also attends monthly meetings with a London Head & Neck Group, helping to find ways of halting Head & Neck cancers, speaking with Surgeons and Clinicians, and is involved with a Mouth Cancer Awareness Event, later in the year. In his ‘spare time’ Tony is also a cricket Umpire, and on the Committee of the Harrow Laryngectomee Club!

Bert Culling: after many years also as a VP, Bert announced his retirement from NALCs executive team, but said he ‘know(s) that the younger team taking over are as fully committed to the welfare of Laryngectomees and to NALC as I have been, and have a wealth of experience to develop NALC to its full potential’.

Bert is still committed to the cause and particularly the work he does in his own region. The educational programme especially. His last year has been a busy one, with 18 trips around the country, and around a dozen educational presentations to the local Ambulance service and at nursing seminars and training sessions.

Sadly, Bert’s local Laryngectomee group (SLC) in Sunderland is dwindling, due to the age of many Members, who are not as energetic as they were and, indeed, the situation seems to be affecting many of other Groups. Meanwhile, Bert’s wife Ethel – his ‘right and left hand’ - has also been committed to the full and he thanked her for her great support and work she undertakes. To conclude, Bert thanked us all for the support he’s received and been offered over the years.

More Archives to be added, when main pages full.

******************************************