Latest news from the NALC

News Updates

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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

National Tracheostomy Week was held from 6-11 November. Each day saw the launch of new resources around a specific theme including patients and families, quality and safety and resources for front-line staff.

On 13 October, Brenda Loynds from the Manchester Club and NALC President Malcolm Babb manned a stall at a Macmillan Health and Well-Being Event for Head and Neck Patients at Wythenshawe Hospital, Manchester.

Malcolm was also interviewed for training to be produced by the National Tracheostomy Safety Project, participating at the invitation of Brendan McGrath who leads the project. The video will be a training resource, describing the laryngectomee journey.

The project is organised by the Health Foundation and the Royal College of Anaesthetists. NALC has been providing crucial input since its inception.

Our most recent Patient Day was 21 Sept in Edinburgh: We heard from Sam Majumdar, consultant ear, nose and throat surgeon and laryngologist as well as President Malcolm Babb, the Edinburgh fire brigade, Macmillan Scotland and David Gibb from Advice Shop Scotland

Notes from the AGM: On 15 May, we 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

NICE Quality Standards have been published 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.

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.

Generous Donation From Belfast: 2016

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 overview

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.

NALC has helped 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 overview

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 and 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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