AAC Pathway for MND

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The AAC Pathway for MND and guidance notes are relevant to the structure of AAC services in England. However, they can provide a pathway for good practice for those working with people with motor neurone disease (MND) across the UK.

The aim of the AAC Pathway for MND and accompanying guidance notes is to ensure that people with MND get the best possible care in relation to their communication needs. They are intended to be clear, practical and easy to use by professionals assessing the communication needs of people with MND.

They aim to inform commissioners of the infrastructure needed to provide an effective and efficient service to meet the needs of people with MND, and to help the reader identify the steps involved in AAC provision, which are:

This summary guidance is an abbreviated version of the full guidance notes and should be used in conjunction with the AAC Pathway for MND

Steps involved in AAC provision:

Diagnosis

1. Diagnosis of MND

A diagnosis of MND triggers eligibility for an assessment by a speech and language therapist (SLT). This referral will normally come from a neurologist and may be part of a referral to a multidisciplinary team. However, someone with MND may also self-refer to speech and language therapy services.

Referral

2. Initial speech and language therapy assessment

During this assessment, a decision will be made as to whether the AAC needs of the person with MND can be managed by the local SLT service. This decision will be based on:

  • the experience and competency of the local SLT
  • the type of MND and rate of progression
  • the wishes of the person with MND and their family and/or carer.

All referrals for people with MND should be assessed by a therapist with specialist knowledge of MND and AAC. If this is not possible, it is essential for the therapist to have direct access to a therapist with specialist knowledge of the condition.

Assessment

3. Local assessment

If local ongoing management is agreed:

  • initial advice on low-tech solutions to support communication should be given as appropriate.

The assessment process will include:

  • current communication ability
  • physical, sensory, speech, language and cognitive abilities
  • communication environment
  • support network.

Presentation: If the person is presenting with bulbar (speech) signs
Action for local SLT: Voice Output Communication Aids (VOCAs) should be introduced at an appropriate stage.

Presentation: If the person is presenting with limb weakness
Action for local SLT: alternative methods of access to technology should be discussed.

Presentation: If the person meets the criteria in the service specification
Action for local SLT: they can be referred for assessment at a specialist AAC service.

Presentation: If the presenting problem is with computer access
Action for local SLT: a referral to the environmental control service should be made in partnership with the occupational therapist.

4. Specialist assessment

If referral to a specialist AAC service is agreed:

  • initial advice on low-tech solutions should be given as appropriate
  • the referral to the specialist AAC service should be actioned within three working days of the appropriate referral form being completed.

Trial

5. Equipment trial

Following assessment, there will be an opportunity to trial equipment or software programs or applications for a minimum of two weeks. This trial can be arranged through a local loan bank, from a specialist AAC service or arranged through a supplier. Free software trials are available from some suppliers.

Provision

6. Funding report

Once a decision is made on the appropriate equipment, a funding report, including a rationale for the decision and a detailed quote, will be produced.

A copy of the funding report can be used to support a funding application to either NHS England from the specialist AAC service, or an application from a local AAC service using the Quality Assurance (QA) framework. Where a person with MND is managed by the local AAC service, an application for funding should be made to the local Clinical Commissioning Group (CCG). A copy of the funding report will also be available for the person with MND in the event
of them deciding to self-fund.

7. MND Association support services

Funding for AAC for those with an established need is a requirement on the NHS. The obligation on specialist AAC services to provide equipment is set out within the service specification. However, if SLTs and individuals have thoroughly explored NHS funding without success and the welfare of the person with MND is compromised, an application can be made to the MND Association to request the loan of equipment or a support grant towards its purchase or hire.

Training and support

8. Equipment provision and training

Equipment provided by the NHS or MND Association should be supported by appropriate training from the specialist AAC service and/or the local SLT with input from the supplier as required.

9. Servicing and repair

All equipment should be maintained in a safe condition.

The person with MND will have the contact details of the SLT and the company supplying the equipment to enable them or their carer to make contact if a problem should arise.

Review

10. Review

Ongoing review by the local SLT will be arranged as appropriate to address changing needs regarding access to technology and/or speech output systems. This will be particularly important in the later stages of disease progression.

Return

11. Return of equipment

When equipment is no longer required, NHS England-funded equipment will be returned to the specialist AAC service and CCG-funded equipment will be returned to the local SLT service. MND Association funded equipment, where agreed, will be returned to the MND Association for checking, cleaning, resetting and recycling as appropriate.

This section also includes:

Find out more

If you would like more information about AAC, please contact our Communication Aids Coordinator or our MND Connect helpline.

 

 

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