As a local Speech Therapist your responsibilities are to:

• Complete a comprehensive holistic assessment of the patient to inform your AAC recommendations (and to include in your referral if referring to us) covering the areas shown in the image below. See AAC Assessment section below.
• Assess for and provide paper based (low tech) AAC, including alternative access, e.g. partner assisted scanning or eye pointing.
• Trial powered (high tech) AAC with direct touch and explore adaptions to make this easier (styluses, touch accommodations, keyguards, gloves)
• Support patients to develop skills for using AAC, including understanding the purpose of AAC, using AAC for multiple communication functions and using alternative access methods (scanning, eye pointing, head pointing).
• Support communication partners (family and friends, staff including school, care and support staff) to build skills for supporting AAC users with their communication.
• Hold the clinical responsibility and oversee the AAC input provided to patients, including by therapy assistants, assistant practitioners, technicians, support workers and teaching/learning assistants.

The goal of AAC is autonomous communication. This does not always mean independent communication.

The long term goal is “being able to say what I want to say, to whoever I want to say it to, whenever I want to say it, however I choose to say it” (Gayle Porter – SLT and developer of PODD).

Paper based or powered AAC?

The guidance below relates to all AAC, whether unaided or aided, paper based or powered AAC (see What is AAC? | North Bristol NHS Trust).

The aim of AAC assessment is to find the best way for someone to communicate.  People do not ‘graduate’ from paper based to powered AAC, neither is better and it is not a hierarchy (e.g. low to high tech).

Most AAC users who have powered AAC also have paper based AAC, and choose depending on the situation (e.g. bed, chair, floor, bathroom, community, playground, work/school/college), who they are communicating with (e.g. familiar or less familiar people), and how they are feeling (e.g. more or less fatigued).

Some people are effective communicators with their paper based AAC, but find it difficult to access or use powered AAC.

The AAC WEST Dynamic Assessment and Implementation Framework© (see image below) was developed by SLTs and OTs at AAC WEST and has been informed by other models of AAC assessment, such as Light’s model of communicative competence (Light, 1989; Light & McNaughton, 2014) and the I-ASC Explanatory Model of AAC decision making (Murray et al., 2020).

The aim is to:

• Guide therapists’ holistic assessment to support decision making
• Guide therapists’ in the areas to consider for robust implementation and future proofing

It is not specific to Specialised AAC Service assessments.  Any AAC assessment, whether by a local professional or a specialised service, should address all the areas in this framework. 

Further details on assessing each area of the framework is provided in our AAC assessment and implementation training.

The first (green) section of the framework above outlines the key assessment areas that relate specifically to the individual: 

• Speech and language: intelligibility, vocabulary, word finding difficulties, sentence length, comprehension, literacy (spelling, reading).
• Cognition: attention, executive functioning, memory, processing speed, orientation, insight, learning.
• Sensory: vision, hearing.
• Physical: fine and gross motor function, accuracy, range, control, tone, consistency, effort, fatigue, posture, seating.
• Current communication: non-verbal communication, how yes/no communicated, speech/communication strategies, AAC used, communication breakdown.
• Culture and identity: ethnicity, heritage, nationality, languages/dialect, traditions, religion/spiritual beliefs and practices, gender identity, pronouns, sexual identity. 
• Roles and occupations: previous/current/desired roles – family, friend, vocation/career, volunteering, hobbies, interests, community groups.
• Psychosocial: expectation, motivation, attitude, confidence, resilience, readiness for AAC, wellbeing, preference.

Collecting information across these domains helps build a comprehensive understanding of the individual', supporting informed decision-making for feature matching, trialing, and implementing AAC.

To gather this information, therapists may:

• Adapt standard language assessments to suit individual access needs. For example:
  • Positioning images/items on a comprehension assessment in the corners of a frame for eye-pointing (see Access below).
  • Using partner-assisted scanning (see Access below) to enable patients to indicate their responses.
• Conduct functional observations during daily activities to gather insights into language, cognition, sensory skills, physical capabilities, current communication methods.
• Request relevant clinical documentation, such as visual assessment reports.
• Engage in discussions and observations to explore culture and identity, roles and occupations, psychosocial factors.

Visit our Resources and useful links | North Bristol NHS Trust for AAC Assessment Tools.

For AAC to be successful, the AAC user needs to be well supported, have regular opportunities to communicate, and have AAC that is appropriate for their environment. 

The second (orange) section of the framework outlines the key assessment areas that relate specifically to the individual’s environment: 

• Communication partners: consistency/number of communication partners, understanding of AAC, attitudes, motivation, and interaction styles.
• Communication opportunities: usual routine, range/consistency of communication partners, social circle, activities/interests, employment/education, culture/community participation. Barriers to opportunity/participation.
• Physical environment: living situation, carers, seating/positioning, places time spent (home/school/college/work/community).
• Institutional environment: attitudes, policies, funding, available equipment.

Collecting information across these domains helps build a comprehensive understanding of the patient’s environment, support informed decision-making for feature matching, and guide support and training for implementation.

This information can be gathered through discussion with the patient and their communication partners, informal observations and using AAC Assessment Tools (see Resources and useful links | North Bristol NHS Trust ).

Access in AAC means the way a user makes their communication system work. For a brief explanation of different AAC access methods, please see our AAC access page AAC access methods | North Bristol NHS Trust. As local therapists these are some things to think about, observe and record as part of your AAC assessment, and this information should be included when making a referral to AAC WEST. You do not necessarily need to carry out formal assessments but conduct functional observations of their physical skills during daily activities to gather insight into what is their best movement. 

Direct touch access

Direct touch access is the most intuitive least demanding way of accessing a communication aid. It is important to explore and enhance this first before moving onto more demanding methods.

• What hand function do they have? 
  • Can they point? (extend one finger or knuckle and tuck others into their palm)
  • Can they point with a fist to a larger target? 
  • What area can they reach (A5, A4, A3 size)? 
  • Can the movement be sustained and repeated?
  • Can they hold a stylus to make the point more accurate or reach further?

See alphabet charts and communication board resources on Resources and useful links | North Bristol NHS Trust to support you with assessing and providing AAC.

Pointer Control 

• If they have some hand function but not enough to accurately touch a screen could they control a cursor with a device? 
  • Mouse, track pad, joystick, roller ball
• If head movement is a reliable body movement there is an access method called head mouse which uses this movement to control the cursor on a powered communication aid. Head mice is operated with software that tracks a reflective dot, features on the face, or a device attached to glasses.
  • Can they hold their head up consistently?
  • Can they turn their head and move their head up and down reliably?
  • Any tremor, reduced range of movement or fatigue?

Eye pointing 

• Can they use the focus of their eyes to point like a pointing finger? Can they look towards or between items, objects or people to indicate they are interested in it and want to communicate about it. This eye point needs to be controlled and intentional. These skills can be used to access paper based resources: 
• Eye Talk
• E-tran frame
• Eye Link
• Megabee

See paper based resources on Resources and useful links | North Bristol NHS Trust.

Partner assisted scanning

If pointing is difficult, partner assisted scanning can allow people to communicate through a very small movement for ‘yes’. A communication partner methodically points to and/or reads out options and waits for selection. These options could be the alphabet, a list of words in categories or phrases. It’s always good to include an ‘is there anything else?’ option. 

• What is their best way of confirming a selection – their ‘best yes’? This can be a very small action e.g. blink, nod, eye movement, nostril flare, foot movement, verbal sound.
• Can they access the items visually (words/symbols) or with auditory presentation (read out loud) or is both beneficial?
• How many items can they process?

See partner assisted scanning resources on Resources and useful links | North Bristol NHS Trust

• Paeds/symbol PAS training coming soon
• Adult/literate PAS training coming soon

Eye gaze skill building

• Eye gaze as an access method demands a range of skills. It can be tiring to learn at first as the AAC user may not be familiar with using their eyes in this way. The skills include:  screen engagement and exploration; cause and effect eye movement on screen; tracking objects on a screen; sustaining attention; head remaining still while eyes move independently; targeting static images on the screen; exploring the whole screen, maintaining gaze on a target to make a selection.
  • Smartbox academy – Look to learn workbook 

To see the skills needed to develop eye gaze access, watch this video: Keys to Developing Eye Gaze Skills

Switch skill building

• Using a switch demands many skills from the person using it. Skills can be developed through play and leisure activities. These are examples of ways switch skills can be practiced: 
• Place switch in easy to reach position
• Use different body parts to select the switch
• Press a switch and see what it does
• Press a switch to intentionally make something happen 
• Exploring with 2 switches
• Making selection at the right time
• Using 2 switches for one activity
• Exploring switch scanning, listening, waiting, selecting the right one (this could range from a single switch with a voice recording saying ‘that one/yes’ used with partner assisted scanning, to 1 or 2 switches controlling a complex communication software.)

See Developing Switching Skills on Powered AAC resources | North Bristol NHS Trust

• Attend our AAC assessment and implementation training 
• RCSLT AAC Clinical Guidance including the role of SLTs in AAC. 
• What could promote autonomy more than giving someone a voice? - RCOT blog post on the role of OT in AAC
• Resources and useful links | North Bristol NHS Trust
• Training for AAC professionals | North Bristol NHS Trust
• How AAC WEST work with independent professionals, suppliers and charities | North Bristol NHS Trust
• AAC SIG 
• Join the RCSLT AAC WEST (South West Link Therapists) Professionals Network
• Guidance for commissioning AAC services and equipment (under Funding Criteria on AAC WEST referral | North Bristol NHS Trust) 
• Barnsley Paper Based AAC Guide 
• Call Scotland - Professionals Learning Modules
• AAC Scotland Modules
• IPAACKS (AAC competency framework) 
• I-ASC Explanatory Model of AAC decision making

One example is farmer’s lung. This is caused by breathing in mould that grows on hay, straw and grain. Another is bird fancier’s lung, caused by breathing in particles from feathers or bird droppings. The disease can also develop from inhaling fungus in humidifiers, heating systems, and air-conditioners found in homes and offices, especially if they are not well maintained. 

Sometimes patients develop hypersensitivity pneumonitis and no obvious cause can be found.

Symptoms of cough, shortness of breath and sometimes fever or flu-like symptoms can occur suddenly after you’ve been exposed. This is the acute form of the condition and can go away without causing permanent damage to the lungs, if the substance that caused the attack can be permanently avoided. 

In other cases, symptoms of cough and breathlessness can come on more gradually, perhaps over months or years; following repeated exposure to a particular substance, and can result in permanent scarring or fibrosis of the lungs. This is called fibrotic hypersensitivity pneumonitis and often a specific cause cannot be found.

Your specialists will take a detailed medical history and perform a thorough physical examination. You may be asked to have the following investigations:

• Lung function tests – breathing tests which see how well your lungs are working. These can be used to monitor your lung disease and also to see whether it is responding to treatment. You may be asked to have a walk test to measure how far you can walk and to make sure you are getting enough oxygen into your blood when you are walking. As part of this test you will be asked to rate how breathless you are on a scale. 
• A CT scan of your chest which shows a detailed picture of your lungs. There are characteristic patterns on these pictures that can help your specialist to identify either scarring or inflammation of lung tissue.
• Blood tests are performed to detect the presence of antibodies against the specific agents (allergens), for example bird proteins in bird fancier’s lung or moulds in farmer’s lung. Antibodies are developed by your immune system to try to protect you when an unknown or unwanted substance enters your body. It is possible to have antibodies and not become ill. 
• Some people may also have a bronchoscopy, where a small flexible tube is passed down into your lungs, allowing collection of cells which may help with diagnosis. 
• Finally, if the diagnosis remains unclear, the specialist might wish to remove a small piece of lung through a surgical procedure (surgical lung biopsy) to confirm the diagnosis.

If the cause can be identified and removed, individuals with early hypersensitivity pneumonitis should make a full recovery. However, they will remain sensitised and should they be exposed to the allergen in the future, their symptoms will often return.

For individuals with more chronic (long-term) disease, removal of the allergen hopefully stops the disease getting worse, although unfortunately this is not always the case. Your specialist may advise some treatments to try to slow or stop the disease getting worse (see below).

If we can identify a specific cause, the most important aspect of treatment is to try to avoid it. This may require rehoming household pets, a change in employment or the use of a specialist mask when exposed to the allergen. Not being able to stop exposure increases the chance that hypersensitivity pneumonitis will progress to irreversible lung damage. 

Your specialist may advise a trial of specific medications as detailed below.

Medications 

Steroids are produced naturally in the body by the adrenal gland. Additional steroid in the form of prednisolone can be given to attempt to reduce inflammation in some patients. They are usually given in tablet form but may be given by injection into a vein. If you are prescribed steroid tablets on a long-term basis, you should not stop them abruptly. You will be given a ‘steroid emergency card’ which you should always carry with you. The specialist may also assess the need for bone protection medication and anti-reflux treatment to protect against some side effects whilst on steroids.

Immunosuppressive medication is commonly used to dampen down the hypersensitive immune response in the lungs. Some examples of these medications are cyclophosphamide, mycophenolate mofetil and azathioprine. One of these medications will usually be prescribed alongside a steroid such as prednisolone. It can allow the dose of the steroid to be reduced and in some cases, may allow the steroids to be stopped altogether. As a result, they are sometimes also called ‘steroid sparing agents’. Whilst you are taking immunosuppressant medication you will require regular blood tests to monitor your response to treatment.

If your condition worsens despite taking a steroid and/or immunosuppressive medication, your specialist may suggest an antifibrotic medication that aims to slow further progression. Other medications and therapies are used to relieve symptoms, such as cough and breathlessness. Your specialist will discuss options with you on an individual basis.

Other treatments

Pulmonary rehabilitation is an exercise and education programme that can help you to learn to manage your breathlessness and remain active. The programmes are multidisciplinary, meaning that the team includes respiratory physiotherapists, nurses, dieticians, doctors and others, and can help improve energy, strength, and your quality of life.

Supplemental oxygen: As lung scarring can reduce the amount of oxygen getting from your lungs into the bloodstream, some individuals may require oxygen therapy. Where the levels of oxygen are low, oxygen therapy may help with breathlessness and enable individuals to be more active. Correct levels of oxygen in the blood are necessary for normal body functions and reducing additional health problems.

Clinical trials: You should also discuss with your team if there are any clinical trials in which you can participate. Clinical trials are voluntary research studies, which are designed to answer specific questions about your care or the safety and/or effectiveness of medications.

Lung transplantation: A small minority of patients may require assessment for and be suitable for lung transplantation.

Have your annual respiratory vaccinations (COVID-19 and Flu) and the pneumonia vaccination (you only have this once).

You may be eligible for a variety of benefits such as Attendance Allowance or Personal Independence Payment if you need help with personal care or getting about.

Our specialist nurses run a regular Pulmonary Fibrosis Support Group which is a space for discussion with other patients with similar lung problems. Here we also aim to provide several presentations from a variety of guest speakers and charities. 

Keep active and do what you enjoy!

Action for Pulmonary Fibrosis

Asthma and Lung UK

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Please complete this for 3 days. 

Enter the following in each column against the time.

• You can change the specified times if you need to.
•  In the time column, please write BED when you went to bed and WOKE when you woke up. 
• Drinks - write the amount you had to drink and the type of drink. 
• Urine output - enter the amount of urine you passed in millilitres (mls) in the urine output column, day and night. Any measuring jug will do. If you passed urine but couldn’t measure it, put a tick in this column. 
• If you leaked urine at any time write LEAK here. 
• Bladder sensation - write a description of how your bladder felt when you went to the toilet using these codes:
  • 0 - If you had no sensation of needing to pass urine, but passed urine for “social reasons”, for example, just before going out, or unsure where the next toilet is. 
  • 1 - If you had a normal desire to pass urine and no urgency. “Urgency” is different from normal bladder feelings and is the sudden compelling desire to pass urine which is difficult to defer, or a sudden feeling that you need to pass urine and if you don’t you will have an accident. 
  • 2 - If you had urgency but it had passed away before you went to the toilet. 
  • 3 - If you had urgency but managed to get to the toilet, still with urgency, but did not leak urine. 
  • 4 - If you had urgency and could not get to the toilet in time so you leaked urine. 
• Pads If you put on or change a pad put a tick in the pads column. 

Here is an example of how to complete the diary:

Bladder diary to print

Date: