Welcome to NALC
Welcome to NALC - The National Association of Laryngectomee Clubs.We are based at :
Lower Ground Floor
152 Buckingham Palace Road
London
SW1W 9TR
Tel: 020 7730 8585
Fax : 020 7730 8584
Best time to telephone: 9.00am - 4.00pm, Monday - Friday.
Laryngectomy means the removal of the larynx or voice box. A laryngectomee is a person who has had this essential and life-saving operation.
NALC has almost 100 clubs nationwide and offers a range of services to Laryngectomees and their families and carers. A major role of the clubs is to provide the sort of non-medical help and information that can only come from the experience of living with a laryngectomy.
Many of our clubs are run voluntarily by health professionals with an interest in improving the lives of their patients. Individual Laryngectomees or carers run some clubs - with some having committees of patients, carers and professionals.
Some clubs are small and merely provide a safe environment in which the members can gather together, enjoy a cuo of tea and encourage new Laryngectomees in their new life. Others are large groups of people who become involved in the political and campaigning side of trying to improve awareness of the condition. Many individuals and clubs work to improve the treatment and availability of medical services both locally and nationally.
Almost all of our clubs have very healthy social lives as one of their major aims is the rehabilitation of people who have been deeply traumatised by their experiences.
The National Association of Laryngectomee Clubs has the following objectives : · To promote the rehabilitation of laryngectomees.
· To unite all clubs within the British Isles whose objectives are to promote the welfare of laryngectomees.
· To encourage the formation of new clubs with similar objectives.
· To collect, co-ordinate and disseminate information relevant to the rehabilitation of the laryngectomee.
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The Association can also advise on speech aids and medical supplies and offers a referral service.
The Association publishes a range of material including the following.
· Information for Laryngectomy Patients.
· Living with a Laryngectomy.
· Handbook for Laryngectomy Patients.Printed and audio
· The Diagnosis of Laryngeal Carcinoma.
· Emergency Resuscitation for Laryngectomy and Tracheostomy Patients.
· Emergency cards and car stickers.
· Stoma care leaflet.
· Quarterly newsletter.
· Professional care pack.
· Living with a Pharyngo-Laryngo-Oesophagectomy.
· Nursing and Laryngectomee Care Video.
There are also two videos available at a small charge on the topics of resuscitation, and pre and post operation visiting
Laryngectomy means the removal of the larynx or voice box. A laryngectomee is a person who has had this essential and life-saving operation. Laryngectomee Clubs have been set up throughout the British Isles and Eire in association with hospitals and speech therapy clinics to help laryngectomees master the technique of producing a substitute voice. Membership of the clubs consists of patients who, in the company of relatives, friends and interested professional people, meet regularly to try their new voices, achieve fluency and give and receive encouragement.
STOP PRESS - MARCH 05
NALC is delighted to report that the National Patient Safety Agency in conjunction with NALC, and after represention from NALC, has produced the following information document for all accident and emergency services and A&E departments. This is a great step forward and should be of great benefit to all Laryngectomees. If any club wishes to use the local press release they can alter the club details to their own. The survey included is the result of the questionaire many of our clubs responded to and we congratulate those clubs on their participation.
See attachments below for copies of the key documents.
NALC is delighted to report that the National Patient Safety Agency in conjunction with NALC, and after represention from NALC, has produced the following information document for all accident and emergency services and A&E departments. This is a great step forward and should be of great benefit to all Laryngectomees. If any club wishes to use the local press release they can alter the club details to their own. The survey included is the result of the questionaire many of our clubs responded to and we congratulate those clubs on their participation.
See attachments below for copies of the key documents.
NEWS RELEASE
Improving emergency care for patients who breathe through their neck
The National Patient Safety Agency (NPSA) today called for improved training of NHS staff involved in the emergency treatment of patients with special breathing needs. The patients affected by this guidance are those who have a long term tracheostomy. In these cases, because patients are unable to breathe normally through their windpipe; they have a hole created in their neck called a stoma to breathe through.
Professor Sir John Lilleyman, Medical Director at the NPSA said: ?We hope that this call for additional training and support for NHS staff caring for long-term tracheostomy patients will help improve the safety of this potentially vulnerable group.?
A survey of members of the National Association of Laryngectomee Clubs (NALC) found that in some cases when neck breathers received emergency care, oxygen was given accidentally via the nose and mouth, preventing oxygen from reaching the patients lungs properly. Sometimes although the oxygen was given correctly via the stoma, mucous plugs blocking the airway were not removed. This also stops the right amount of oxygen getting to the patient?s lungs.
The NPSA found that the problem was a lack of understanding of the specific needs of neck breathers amongst some ambulance and hospital staff. These healthcare staff should have more training on the techniques to:
· give oxygen effectively , and;
· unblock the stoma if necessary.
The NPSA is:
· Sending a patient safety information notice to NHS organisations including accident and emergency departments and ambulance trusts highlighting the problems and advising on how they can act to ensure that the safety of patients is protected;
· This includes suggesting that airway management for neck breathers is included in training courses for ambulance staff and hospital staff working in A&E or others likely to be involved in the emergency care of neck breathers;
· Advising that all emergency response vehicles and resuscitation trolleys contain appropriate equipment to manage neck breathers? airways and administer oxygen effectively;
Bert Culling, President of the National Association of Laryngectomee Clubs said: ?We fully support the NPSA?s patient safety information notice alerting healthcare staff to some of the safety issues encountered during the emergency care of neck breathers. The correct technique in the care of neck breathers has been a serious concern of our organisation for many years and we are delighted that the NPSA is tackling this problem.
?As an organisation whose executive and board are all patients and carers, we have welcomed the opportunity to work in partnership with the NPSA to help improve the safety of NHS patients.?
Dr Tom Clarke, Chair of the Joint Royal Colleges Ambulance Liaison Committee (JRCALC) said: ?As the organisation responsible for clinical guidance of the UK ambulance services JRCALC fully supports this useful advice which will further help to ensure the delivery of the highest standards of care to this special group of patients.?
More information
The full patient safety information notice is available form the NPSA website: www.npsa.nhs.uk/advice
Further information about the work of The National Association of Laryngectomee Clubs (NALC) can be obtained from:
Vivien Reed, Secretary
The National Association of Laryngectomee Clubs
Lower Ground Floor
152 Buckingham Palace Road
London
SW1W 9TR
Tel : 020 7730 8585
Fax : 020 7730 8584
The survey of members of the National Association of Laryngectomee Clubs (NALC) is available at www.npsa.nhs.uk/health/publications.
Media enquiries should be made to Nick Rigg on 0207 927 9362.
National Patient Safety Agency
The National Patient Safety Agency (NPSA) was established in July 2001 following the recommendations of the Chief Medical Officer?s report on patient safety, An Organisation with a Memory. The NPSA?s role is to improve the safety of NHS patients by promoting a culture of learning and reporting from patient safety incidents, and to manage the national reporting system to support this function.
By collecting and analysing data on patient safety incidents the Agency will be able to identify trends ands patterns of avoidable incidents, provide feedback to organisations to enable them to change their working practices, help develop models of good practice and systems solutions at national level and support ongoing education and learning.
Further information is available at www.npsa.nhs.uk
Improving emergency care for patients who breathe through their neck
The National Patient Safety Agency (NPSA) today called for improved training of NHS staff involved in the emergency treatment of patients with special breathing needs. The patients affected by this guidance are those who have a long term tracheostomy. In these cases, because patients are unable to breathe normally through their windpipe; they have a hole created in their neck called a stoma to breathe through.
Professor Sir John Lilleyman, Medical Director at the NPSA said: ?We hope that this call for additional training and support for NHS staff caring for long-term tracheostomy patients will help improve the safety of this potentially vulnerable group.?
A survey of members of the National Association of Laryngectomee Clubs (NALC) found that in some cases when neck breathers received emergency care, oxygen was given accidentally via the nose and mouth, preventing oxygen from reaching the patients lungs properly. Sometimes although the oxygen was given correctly via the stoma, mucous plugs blocking the airway were not removed. This also stops the right amount of oxygen getting to the patient?s lungs.
The NPSA found that the problem was a lack of understanding of the specific needs of neck breathers amongst some ambulance and hospital staff. These healthcare staff should have more training on the techniques to:
· give oxygen effectively , and;
· unblock the stoma if necessary.
The NPSA is:
· Sending a patient safety information notice to NHS organisations including accident and emergency departments and ambulance trusts highlighting the problems and advising on how they can act to ensure that the safety of patients is protected;
· This includes suggesting that airway management for neck breathers is included in training courses for ambulance staff and hospital staff working in A&E or others likely to be involved in the emergency care of neck breathers;
· Advising that all emergency response vehicles and resuscitation trolleys contain appropriate equipment to manage neck breathers? airways and administer oxygen effectively;
Bert Culling, President of the National Association of Laryngectomee Clubs said: ?We fully support the NPSA?s patient safety information notice alerting healthcare staff to some of the safety issues encountered during the emergency care of neck breathers. The correct technique in the care of neck breathers has been a serious concern of our organisation for many years and we are delighted that the NPSA is tackling this problem.
?As an organisation whose executive and board are all patients and carers, we have welcomed the opportunity to work in partnership with the NPSA to help improve the safety of NHS patients.?
Dr Tom Clarke, Chair of the Joint Royal Colleges Ambulance Liaison Committee (JRCALC) said: ?As the organisation responsible for clinical guidance of the UK ambulance services JRCALC fully supports this useful advice which will further help to ensure the delivery of the highest standards of care to this special group of patients.?
More information
The full patient safety information notice is available form the NPSA website: www.npsa.nhs.uk/advice
Further information about the work of The National Association of Laryngectomee Clubs (NALC) can be obtained from:
Vivien Reed, Secretary
The National Association of Laryngectomee Clubs
Lower Ground Floor
152 Buckingham Palace Road
London
SW1W 9TR
Tel : 020 7730 8585
Fax : 020 7730 8584
The survey of members of the National Association of Laryngectomee Clubs (NALC) is available at www.npsa.nhs.uk/health/publications.
Media enquiries should be made to Nick Rigg on 0207 927 9362.
National Patient Safety Agency
The National Patient Safety Agency (NPSA) was established in July 2001 following the recommendations of the Chief Medical Officer?s report on patient safety, An Organisation with a Memory. The NPSA?s role is to improve the safety of NHS patients by promoting a culture of learning and reporting from patient safety incidents, and to manage the national reporting system to support this function.
By collecting and analysing data on patient safety incidents the Agency will be able to identify trends ands patterns of avoidable incidents, provide feedback to organisations to enable them to change their working practices, help develop models of good practice and systems solutions at national level and support ongoing education and learning.
Further information is available at www.npsa.nhs.uk
