History
The National Association of Laryngectomee Clubs (NALC) was set up in 1975 by laryngectomee groups in London, Bristol, Nottingham and Birmingham. Its purpose was to promote the rehabilitation of laryngectomees after their operation, providing them with the information and support that was needed. It also sought to promote public understanding of the needs of laryngectomees, their carers and families. It became a registered charity in 1976.
For many years, NALC was an associated charity of Macmillan Cancer Support. It had clubs all around the UK, who provided the sort of non-medical help and information that can only come from experience of living as a laryngectomee. In recent years the number of clubs has fallen, as has the number of hospitals performing laryngectomies, and NALC is no longer connected to Macmillan. However our aims and purposes remain the same as they were in 1975.
Services provided by NALC
Information for patients
We provide leaflets and DVDs to help and inform patients before and after their surgery. Many hospital trusts give their patients our information packs.
Online support
We have a website from which all our leaflets can be downloaded, along with news of laryngectomee developments and events. We have a Youtube channel with many videos available and we are active on Twitter.
Telephone advice
Our phoneline provides a nationwide resource for laryngectomees and their families when they need support and advice. We also support professionals in a variety of settings who work with laryngectomees, especially those unfamiliar with our needs, such as care home staff.
CLAN
Our quarterly newsletter keeps members up to date with laryngectomee news, new prescription items and laryngectomee activities.
Zoom Meetings
Online meetings, using the Zoom platform, are organised throughout the year. We invite guest speakers, often clinicians who are experienced in working with laryngectomees.
Supporting local groups
We support local groups in a variety of ways and are keen to help new or changing groups.
Assisting Clinicians
We contribute to events at hospitals and universities to advise about the needs of laryngectomees, providing a valuable patient perspective, especially around patient safety. We also have training resources to assist clinicians who may be unfamiliar with our needs, such as community nurses.
Providing a patient voice
For many years, NALC has provided a patient voice on relevant national groups and committees, including NICE guideline and quality standard committees. We are involved with the UK Head and Neck Cancer Coalition, which was formed in 2022.
Research
NALC supports research projects and studies in many ways, including reporting experiences, reviewing patient materials or joining patient advisory groups.
Our Team
Malcolm had a laryngectomy in 2002 but was able to return to his work as a school teacher. After early retirement in 2007 he became involved with NALC. In 2013 he was elected NALC President. A particular interest of Malcolm’s is the involvement of patients in cancer research and he is currently involved in several studies, including the ground-breaking PETNECK2.
He has been a member of many national committees, including the head and neck audit DAHNO and NICE Guideline and Quality Standards Committees.
His first priority is working with patients and carers to ensure they receive the information and support needed to assist them through the life-changing process of a laryngectomy.
Sadly Tony passed away recently. He will be missed greatly.
Tony is the longest-serving member of NALC’s Executive Group. He has been a Vice-President and is currently Treasurer. As well as leading NALC’s Harrow Club, Tony has played a vital role in NALC’s Education Programme, delivering presentations, concerning laryngectomee vulnerabilities and safety to clinicians and students. He is a member of the Shout At Cancer choir.
Trevor’s involvement with NALC began in 2017, after having a laryngectomy a couple of years earlier. Along with his wife Sally, he had previously been working in his locality to raise awareness of laryngectomee safety issues and to provide peer support. In May 2020 he and Sally were featured in a Channel 4 television programme – Old, Alone and Stuck at Home, which showed the experiences of cancer patients coping with the lockdown.
Sally provides a vital contribution to NALC by sharing her experience as caregiver for Trevor. Like Trevor, she is very keen to promote awareness of laryngectomee vulnerabilities and this is a strong motivation for her involvement with NALC. Whilst filming for the Channel 4 television programme she was seen experiencing her own cancer journey.
Vivien Reed
Secretary
Kerry Ruff
Assistant Secretary
Martin is Professor of Laryngology at University College London and a consultant ENT surgeon at UCLH. He was part of a team that carried out a larynx transplant in 2010, in California. He has been involved with NALC for over 25 years.
Ian Honeysett was an HR Manager with the GLC when, one day in 1982, his wife, Jan, who was an ENT Sister at Charing Cross Hospital, told him that NALC wanted to have a newsletter and that she had proposed him as editor. This was on the basis that he quite enjoyed writing. As they were fairly recently married (and still are), he had little option but to agree. As he knew nothing of editing, a meeting was arranged with Nick Moll of Ludo Press to learn what editing actually involved. This was pre-computers and involved typing, cutting out and pasting items onto special sheets of paper. The newsletter needed a name and Ian, being fond of wordplay, tried reversing NALC to create CLAN. It seemed to describe the family feel of NALC. 40 years on, Ian is still editing CLAN – but now using a computer! The newsletter has expanded from 4 pages to 8 to 12 and is now in full colour and in pdf format too. He still enjoys being Editor and has worked with so many wonderful people over those 40 years. It’s been great fun being part of the CLAN!