Memorandum submitted by the National Association
of Laryngectomees Clubs after the publication of the Welfare Reform
Green Paper
All Laryngectomees have had their larynx removed
together with the epiglottis, their trachea is diverted to allow
breathing through a neck stoma. Whilst levels of disability vary,
90+% are cancer patients, with loss of speech, smell and taste.
Reconstruction leads to difficulties in swallowing and breathing.
The open stoma places the Laryngectomee at risk from even small
amounts of water, cold air, or poor air quality, the lack of `normal
speech' places them at risk as they face difficulties in seeking
assistance, this may well be a particular problem outdoors or
when travelling alone.
Poor swallowing ensures that all Laryngectomees
will require to take much greater time eating to ensure the good
nutrition required, as a cancer patient to maintain both weight
and health. Removal of the epiglottis can lead to regurgitation,
not only from the mouth but also on occasion through the nose,
especially when bending or if a coughing fit occurs, together
with lack of pressure in the airway and poor oxygen intake this
can make lifting a major difficulty.
Many Laryngectomees have previously been employed
in heavy industry or where environmental risk factors may have
played some part in the onset of the laryngeal cancer, clearly
a return to than environment is not advisable. NALC is aware that
significant numbers of Laryngectomees may have poor literacy,
which may have been a factor in their choice of occupation and
may have resulted in low levels of knowledge of life style risks
factors. For the low percentage of Laryngectomees under retirement
age at the time of Laryngectomy [laryngeal cancer is mostly found
in patients aged over 60], for whom returning to their previous
occupation is not an option, poor educational achievement may
well be a significant additional factor which should be taken
into account by those assessing their needs.
Laryngectomees face many problems in the use
of electronic communications equipment, not least as they are
frequently seen as hoax callers. Laryngectomees have 3 main means
of overcoming their lack of speech:
— by the use of a voice prosthesis,
in most cases this requires them to cover the stoma with a finger,
which may have Health & Safety implications;
— by the use of a Electro larynx a
vibrator placed onto any remaining neck muscles;
— by using oesophageal speech using
stomach muscles to `burp' sounds, which with good lip patterning
can be used to communicate.
Some Laryngectomees will not achieve reasonable
levels of communication by any of these methods but will rely
on family members to support their mouthing words. There are no
trained and accredited human aids to communication for Laryngectomees,
other than by specially trained Speech & Language Therapists,
whose support is usually only provided within a multi disciplinary
health meeting or in a judicial setting of County Court or higher.
It should be recognised however that any stress
may result in complete loss of voice.
NALC is aware that assessors lacking awareness
of the complexity of problems faced by lack of speech have suggested
writing everything down, this is
time consuming and may well discriminate against
those with poor educational achievement but above all could well
be painful for someone with major damage to the shoulder girdle,
as the result of Laryngectomy. Many Laryngectomees are also found
to have signs of Dupytrons contracture, which may exacerbate surgical
or radiological damage.
Even in low level noisy and social environments
many Laryngectomees may well depend on their spouse or partner
to support their communication or indeed speak for them, alternative
voice production is both difficult to achieve, tiring and for
many an emotionally draining undertaking.
Recent developments are improving voice prosthesis
use by providing some hands free use at a more acceptable volume
and clarity. Voice prosthesis use, however can mean frequent visits
to Speech and Language Therapy departments, or to seek assistance
of other specifically trained health professionals, as the length
of time between changes of equipment can vary widely. There may
well be a need to ensure a moist environment to extend the time
between visits, for this reason it is advised that reasonable
access to humidification or a nebuliser be made available.
Stoma care is an essential fact of life for
all Laryngectomees, Electro larynx and oesophageal speech users
can normally undertake this care with a degree of independence.
However given the high levels of mucus present means that many
Laryngectomees rely on support from another individual, this may
be seen as a Health and Safety issue in some places of employment.
NALC is concerned that experience gained from
the Disability Benefits system, would indicate a widely experienced
lack of awareness of the very wide range and complexity of difficulties
faced by Laryngectomees in attempting to inform assessors of the
difficulties the individual faces. Translating this to Incapacity
Benefit and Pathways to Work could well result in a potential
employer being faced with someone with such a wide ranging complex
disabilities also finding that they unable to track down any well
sourced information on the support available. NALC recognises
that this in part may be due to the low numbers of individuals
under retirement age for whom there is this need.
Poor breathing and low oxygen intake together
with the water risk factors should make provision of Blue Badge
parking for a Laryngectomee highly recommended for inclusion in
any assessment. The need for this adjustment may well increase
the longer post operate the Laryngectomee is, as lungs not under
pressure from the `normal' airway begin to reduce activity making
walking more difficult as time passes. However it is the risk
factor of a Laryngectomee out of doors in poor weather, rain,
snow, wind [down draughts from tall buildings can be extremely
difficult to deal with for a Laryngectomee], cold or poor air
quality may all place the Laryngectomee at increasing levels of
risk the further the distance covered out of doors. Door entry
systems place addition barriers for all those with communication
difficulties none more so than for Laryngectomees.
NALC feels that Laryngectomees directed down
a pathway to work will require that employers make reasonable
adjustment by ensuring high levels of support are available:
Communications equipment appropriate to the
needs of the Laryngectomee ie:
— Telephone with outgoing speech enhanced,
with a mechanical means of the handset being held other than by
the Laryngectomee or training in the use of specialist IT equipment,
one employer has indicated that the use of FAX for routine communication
is too expensive.
— Recognition that Laryngectomees may
well be unable to write and speak or eat and speak at the same
time.
— Training for other staff in the skills
needed to hear and respond appropriately to a Laryngectomee `voice'.
As the result of Laryngectomees inability to
shout for help it is recommended that no Laryngectomee should
be employed in an area lacking supervision by others, and that
any staff trained in First Aid, receive additional neck breather
training prior to the Laryngectomee taking up employment. Even
in hospital settings NALC has had to seek the support of the National
Patient Safety Agency to ensure Health Service staff, employed
by Acute Trusts, are fully aware and trained to meet the specialised
needs of neck breathers.
NALC is aware that those Laryngectomees who
have attempted to return to work, or to take up alternative employment
provided by a previous employer find there levels of energy reduce
they further they are post operative this may well impact on both
their performance and their ability to continue with that employment,
this lowering of energy may be explained by reduced lung function.
NALC would wish the committee to be aware of
the emotional impact on Laryngectomees of the complex difficulties
they face. Experience has taught us that lack of recognition even
by health professionals, during the claims for DLA and AA of these
profound difficulties can have a dramatic impact on their sense
of worth. To be told that because a consultants advice that the
patient is rehabilitated is taken by other professionals as indicating
that the patient has returned to his pre cancerous condition or
even conversely by the patient that this is as good as it is going
to get, can be extremely demoralising, when being told that despite
the complexity of their difficulties they do not meet the necessary
criteria in legislation, despite the trauma they have undergone
and continue to face. NALC would be alarmed if introduction of
the pathways to employment were to increase their perception that
they are unable to support their families adequately.
NALC has become aware that there may be an issue
for individual who having undergone Laryngectomy is awaiting Radiotherapy
or Chemotherapy, and could at that stage not be considered as
discharged from the care of the multi disciplinary team, although
they may be living at home. We should add that for many Laryngectomees
oncology treatment will have been given prior to Laryngectomy.
NALC is aware that this may be a cancer patient issue nationally.
NALC feels that it would be reasonable to conclude,
that most Laryngectomees, could be considered to be so "limited
by their illness or their disabilities, that it would be unreasonable
to require them to undertake any form of work". In addition
NALC feels that there may well be serious difficulties in designing
any test which would fully meet both other legislative criteria
and the functional capacity assessment. Certainly those used in
Disability Living Allowance and Attendance Allowance assessments
are seen as leading to excessive numbers of mostly successful
tribunal hearings. NALC feels that this is, in the main, as a
direct result of a failure to ensure that the criteria used is
compatible with the condition resulting from Laryngectomy.
| 
