News Updates
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AUGUST 2020
Much of NALC's work is being affected by the coronavirus pandemic. We, and our clubs, have been unable to hold face to face meetings. Meeting patients on the ward or in a clinic is impossible.
We are looking to use Zoom for our postponed AGM and some patients have been supported before an operation in the same way. Clubs are trying new ways to meet such using an outdoor venue, with social distancing employed.
It is vital we adapt to the new circumstances which may last for some time ahead.
MAY 2020
Webinars for Laryngectomees
Severn Healthcare are excited to confirm that their trio of Clinical Specialist Speech and Language Therapists, Andy Plumpton, Fiona Robinson and Paula Barnes, together with Mr Malcolm Babb, the President of the National Association of Laryngectomee Clubs (NALC), will be providing their first series of webinars, designed to support the laryngectomee community during this difficult time. The webinars are titled:
‘Your Questions Answered – Laryngectomy Specific Information During COVID-19’ and are scheduled to take place on:
- Thursday 28th May (2-3pm)
- Thursday 18th June (2-3pm)
The panel are going to address the common concerns connected to Corona Virus and the scheduled easing of lockdown, as suggested by members of the laryngectomee community. In addition to a question and answer section, the topics to be covered will include:
- The latest guidance on the management of a leaking voice prosthesis (valve)
- Managing a leaking valve at home – a laryngectomee’s tips and tricks on placing a Voice Prosthesis Plug Insert
- The valve change clinic during the Corona Virus pandemic – what to expect
- Use of a mask – should it be placed over the mouth and nose, the stoma or both?
- Learning to self-change a voice prosthesis
If you are interested in viewing the webinars then you simply need to contact Severn Healthcare’s Office Administrator, Julie Lee, either by email: Julie.Lee@severnhealthcare.com or via telephone: 01635 887640. Julie will then register you and send you a weblink to the event of your choice, together with the relevant passcode.
JANUARY 2020
INDIVIDUAL MEMBERSHIP OF NALC
NALC was established to assist laryngectomees and their support groups nationwide. In its heyday there were over 100 affiliated groups, but the number has declined by almost 50%. The decrease is attributable to several factors. The introduction of specialised centres for head and neck treatment reduced the number of trusts performing laryngectomies. Recently there have been massive changes in how patients get information and support, with online resources proliferating. All of this means there are many laryngectomees who have no support group in their immediate locality.
The NALC constitution has always allowed individuals to join NALC, in addition to groups becoming affiliated. In practice though, this has not happened for many years. We feel it is an appropriate time to promote individual membership to ensure all laryngectomees , wherever they live, can be involved with NALC.
If becoming an individual member appeals to you please get in touch with the NALC office for further details, using any of the contact methods provided on the website
AGM June 3rd 2019 APPOINTMENTS
The following will serve as Officers 2019-20
PRESIDENT Malcolm Babb
TREASURER Tony Smith
VICE-PRESIDENTS Tony Hudson Gloria Tuck Trevor Hutson
(Sally Hutson will be a member of the Executive Group)
SPRING 2019
In our first year without any financial support from Macmillan we have been fortunate to receive a grant from a charitable trust and a significant legacy. Nonetheless the need to acquire further financial support remains.
Aside from fundraising, our safety project has been a priority in recent months. With the assistance of our current partner, South Central Ambulance Service, we will extend the project to other areas later this year.
Another priority for 2019 is to increase the number of hospital trusts using our services.
WINTER 2018/19
EGM
There will be a short EGM before the General Committee in January. This is needed to amend the constitution to enable the AGM to be held in early June instead of May, St Peters is not available on any Monday in May, partly due to the Bank Holidays.
AUTUMN 2018
HPV VACCINATION FOR BOYS
The campaign which NALC has supported to secure vaccination for boys as well as girls succeeded in the summer. However, the Department for Health are not prepared to arrange a catch-up programme for all boys currently in secondary school. Also there is still no start date for the introduction of "jabs for the boys" unlike Ireland which makes a start in January. Our campaign has some work to do yet.
RESEARCH
NALC has been involved in a research study, De-ESCALaTE, led by Professor Hisham Mehanna of Birmingham University. It aimed investigate if the drug cetuximab was more effective in treating HPV-related throat cancer than cisplatin, the current standard care. The results were published in The Lancet and showed cetuximab was less effective than cisplatin. Patient representatives have written a summary of the results which are being shared with all the study participants.
THIRD INTERNATIONAL HEAD AND NECK CONFERENCE
The conference, organised by Chris Curtis of The Swallows, took place in Nottingham in November. NALC had a stand on both days, the first for clinicians and the second for patients and carers. Members of NALC's Chesterfield club attended what turned out to be an enjoyable and rewarding patient day.
SUMMER 2018
Look out for World Head and Neck Awareness Day July 27
HPV VACCINATION
As a member of HPV Action, NALC has been supporting the campaign for equal vaccination. A decision from the relevant committee (JCVI) is expected in late July. This time there are grounds for real optimism that the programme will be extended to boys. If so we need to campaign to get parents to take up the opportunity to protect their sons, if not the fight goes on.
SAFETY CAMPAIGN
Following reports from NHS England of two recent laryngectomee fatalities through inappropriate care, NALC is working on a new initiative. Tony Hudson is taking the lead working with South Central Ambulance Service and Community First Responders to get NALC involved in the training of staff around the area of the needs of neckbreathers. If successful we aim to extend the model to other areas.
AUTUMN 2017
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.
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 has worked with partners in the USA, Australia and elsewhere to launch the first worldwide Head and Neck Cancer Awareness Day on July 27th 2017.
Research Update - late 2016
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.
In 2016, 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.
Quality Standards
NALC President, Malcolm Babb, is a lay member of the NICE Quality Standards Advisory Committee for head and neck cancer.
Swimming update
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.
NALC is now aware of another location, Northampton, which along with Exeter offers training to laryngectomees wishing to return to swimming.
