Select Committee on Work and Pensions Written Evidence

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.

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