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News update
AUTUMN 2017

Mark your calendars: Patient Day
Thursday 21 September 2017
NALC's next Patient Day will be in Edinburgh and will welcome anyone interested in the latest developments.

Join us on Thursday 21 September at the Principle Edinburgh Hotel, EH2 2PB, for a range of informative speakers and the chance to find out about the latest products. The day is free to attend.

To register, please contact NALC on 0207 730 8585 / info@laryngectomy.org.uk


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. 


Improving tracheostomy care

Tony and Maureen Hudson (Vice-President and his wife/carer) and Malcolm Babb attended a meeting of the Improving Tracheostomy Care Project, in Birmingham.

The project is organised by the Health Foundation and the Royal College of Anaesthetists the meeting was attended by a range of doctors, nurses and allied professionals with an interest in tracheostomy safety.

We gave a presentation about NALC's work around patient safety. It was well-received and we made many new contacts which will help us extend our Education Programme.

We will be continuing to provide patient input and Maureen's perspective as a carer was much appreciated by the audience.

 

NICE Quality Standards

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The NICE Quality Standards Advisory Committee for Head and Neck Cancer has published its recommendations.

It focuses on four areas of treatment, following recommendations in the latest NICE guidelines published last year. If the recommendations are fully implemented the patient experience would be enhanced. Treatment options for cancer of the larynx feature in one of the quality statements.

The full report can be found here

NALC Vice-President, Tony Smith, was part of the group that produced the NICE guidelines and President, Malcolm Babb, was a member of the Quality Standards committee.

 


 


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We're now on Twitter. Follow us now @laryngectomy75 to keep informed and up-to-date with NALC's continuing support for laryngectomees.

 


 

The Swallows

Led by Chris Curtis, The Swallows is a support group for head and neck cancer patients.  It is based in Blackpool but its reach is far wider than that.  NALC looks forward to working with The Swallows to help achieve our shared goals.  Chris is working with partners in the USA, Australia and elsewhere to launch a worldwide Head and Neck Cancer Awareness Day on July 27th 2017

 



Research Update

The new treatment of immunotherapy offers much promise for providing more success than conventional treatments but also fewer side effects.  So far, for head and neck cancer, it is only used in clinical trials.  NALC has been asked to support a project to extend its use and if this secures the necessary funding we will be contributing for some years.  NALC is also supporting a project to identify best practice for supporting patients to overcome or cope with the long-term effects of the treatment they have received.

 



Quality Standards

NALC President, Malcolm Babb, is a lay member of the NICE Quality Standards Advisory Committee for head and neck cancer.  The final recommendations of the committee will be published in February.

 


 

Andrew Staines

It was with great sadness that we received the news in October 2016 that Andrew Staines, CLAN’s first regular cartoonist had died. Andrew belonged to one of NALC’s oldest clubs, The Popinjays at Charing Cross Hospital. Andrew was an excellent artist and had a wicked sense of humour which made him an ideal cartoonist.

Andrew had a fascinating career as an actor, zoo-keeper and house-sitter, specialising in crazy dogs, amongst other things.

His father was Geoffrey Staines, a director at the Theatre Royal York. Andrew, having decided that he had ‘seen too much of the underside of acting’ to want to become an actor instead joined the army.

After 3 years and feeling homesick for the theatre, with some help from his father, he became an Assistant Stage Manager in the Northampton Repertory company. From there he went on to become a Stage Manager in Sheffield and eventually started to Act in a variety of supporting roles. His acting highlights included the first modern production of the York Mystery Plays in 1951.

When a dear friend, Ruth, fell ill with throat cancer, Andrew gave up the acting and went to London to look after her. After 4 years working in a department store and with the recovery of Ruth he went back to acting, starring in a few episodes of Dr Who until finally in 1993 decided not to renew his Equity card.

Andrew went on to become an animal sitter, staying in people’s homes while they were away on holiday and looking after their pets. Andrew became very involved with the Popinjay Club in the 70’s through his friendship with Ruth and then with NALC through his friendship with Joe Block, NALC’s then President. And he was soon a key member of the CLAN team with his regular literary and artistic contributions.

 


 

Swimming Update

NALC is now aware of another location, Northampton, which along with Exeter offers training to laryngectomees wishing to return to swimming. 

 

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Swimming

NALC is pleased to support a new project to assist laryngectomees wishing to return to swimming. The Royal Devon and Exeter NHS Trust have introduced a programme to train patients to learn to swim again using a device called an aquather. They can also assist by providing training for professionals who wish to introduce a similar service in their own area. There is more information on page 11 of the edition of our newsletter, CLAN, published in March 2016, which can be downloaded from this website.




Patient Days

NALC will be taking part in two laryngectomee patient and carer events in the autumn, working with Countrywide Supplies. 




Research

Last year members of NALC’s clubs assisted a research study by Lizz Summers, an SLT from Cambridge. The project successfully recruited sufficient patients and the findings, about experiences of using valve speech, will be published in the next edition of CLAN. Lizz is also talking about the study at the Eastern Region Laryngectomy Conference, in Cambridge in May (see events page).

Lizz is now planning her next study and will be asking, in the autumn, for help from laryngectomees from London and the south-east. Details will be shown on this website and in CLAN.





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Generous Donation From Belfast

On October 1 Ward 29 (ENT) of the Royal Victoria Hospital, Belfast organised a Coffee Morning to raise funds for NALC. Shown in the photograph is Alex McGuiggan, NALC Treasurer, receiving a cheque for £800 from CNS Daphne Riddell and Mr Barry Devlin, ENT Surgeon.

NALC is very grateful for this tremendous support and thanks all involved for their hard work and generosity.



Head and Neck Cancer Research

NALC’s core activity is to provide information to patients facing a laryngectomy and, through its affiliated clubs, to support them before and after the operation. However for many years NALC and its members have made a contribution to the whole range of patient and carer activity in support of the delivery of head and neck cancer treatment.

From its inception, the NCRI Head and Neck Cancer Clinical Studies Group has included patients or carers from NALC. Every year NALC is asked to support many proposals for studies or clinical trials that are seeking funding. Additionally, our members get involved in the running of these trials or studies.

Last year we helped a project based at University College, London, aiming to develop a synthetic robotic larynx, in its application for funding. This autumn we have given further support by recruiting laryngectomees to assist in a sub-study to look at the use of electromyographic signals in detecting basic functions such as breathing and coughing.

NALC is very grateful to the members of its clubs in London and surrounding areas that have volunteered to assist with this project.



 

Funding Update

NALC has been an associated charity of Macmillan since its formation in 1975, receiving financial support for all of its activities. In 2013 NALC learned that Macmillan wished to phase out its support over a three-year period, by the end of 2016.

A joint action plan was agreed to assist NALC develop its fundraising activities and this enabled NALC to continue to provide its full range of services in the current year, 2015. I am pleased to report that we will be able to do the same in 2016, despite a further reduction in Macmillan funding. This is because we have managed to meet our fundraising targets for the year.

We are very grateful to the clubs and individuals that have made this possible, by their hard work and generosity.

Looking further ahead, it will be essential to continue to develop our fundraising work. However NALC’s officers have every confidence that our work to assist patients, carers and clinicians will continue for many years ahead.






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Andy Gage

It was with great sadness we learnt in early May that one of our Vice-Presidents, Andy Gage, had passed away. He shared news of his illness last December and he showed a lot of spirit and determination to achieve a favourable outcome, which sadly was not to be.

His background made him the ideal webmaster for the new NALC website when it was launched in late 2012. His experience in copywriting made him a great asset not just to NALC but to other groups such as Macmillan. Andy became a NALC Vice-President in May 2013. He was prepared to help with anything and embraced the challenge of making NALC self-sufficient as Macmillan funding was being phased out. We will greatly miss his friendship and support; he was an enthusiast and a very valuable member of our team.

He played a large part in the revival of Central London Laryngectomee Group and enthusiastically supported a stem-cell research project. He wrote an account of his life in CLAN, our newsletter, in September 2013, which is still available on our website.

 

Malcolm Babb

NALC President