Publication - Progress report

Provision of Communication Equipment and Support: Part 4 of the Health (Tobacco, Nicotine etc. and Care) (Scotland) Act 2016: progress report 2019

Published: 21 Feb 2020

Report on progress since commencement of Part 4 of the Health (Tobacco, Nicotine etc. and Care) (Scotland) Act 2016 - Provision of Communication Equipment in March 2019.

Contents
Provision of Communication Equipment and Support: Part 4 of the Health (Tobacco, Nicotine etc. and Care) (Scotland) Act 2016: progress report 2019
2. Activities and Progress

2. Activities and Progress

2.1 Engagement Visits to the AAC Service Within Health Boards

2.1.1 Background

An initial round of visits to Health Boards prior to commencement of legislation was undertaken by Scottish Government policy officials in winter/spring of 2016/17, with the aim of better understanding how local provision of communication equipment and support were being delivered. Those visits acknowledged variation in service models, and reflect the flexibility in historical service development, in response to local opportunities, pressures and priorities.

The visits revealed a network of dedicated practitioners across Scotland, who would be supported by AAC Executive Leads, nominated by boards in 2016, providing a clear point of contact within a board setting, and responsible for driving forward this work in collaboration with the Scottish Government, people who use AAC and their families, and other stakeholders including AAC service providers. AAC Executive Leads have and continue to raise the profile of AAC providing strategic leadership at senior team level for this programme of work, bringing an awareness of the needs of those without a voice to be heard.

A further round of visits and discussions with health boards took place between September 2018 and January 2019, with discussion structured around six questions. (See attached template at Annex B)

2.1.2 What Health Boards told us

There was limited evidence, at this early stage post commencement across the whole of Scotland, of impacts on service provision although there are some pockets where there has been clear change. Boards reported the legislation was making a difference in the following ways:

Impact

  • One area mentioned they have been able to use the legislation to inform and improve services, through revision of internal processes resulting in quicker access, with all those identified as requiring AAC receiving it in a timely manner.
  • Two boards commented "it is too early to say as numbers relative to the general population are so small" and "too early to see any real time impact".

Financial Budgets

  • Six boards highlighted the financial aspect of provision and is detailed below.
  • As a consequence of the legislation five boards reported work has been undertaken to identify funding streams and improvements around the management of equipment.
  • Legislation is reported to have had a positive impact on resources in two board areas, with quicker access and closer monitoring of expenditure.
  • Six health boards have now allocated additional funding for the provision of communication equipment.

"the legislation is definitely making a difference with secured funding, access is easier and quicker"

"as part of our cost-pressures process this year and rather than dealing with demands on a case by case package of funding, we have allocated £220,000 into communication equipment and staffing as a response to the AAC implications. Currently this is not recurrent as we need to continue to map additional needs and continuing costs. Of this allocation, roughly £100,000 is for additional staffing to support users of the service'.

"in light of the legislation, and recognition of demand the fund will be supplemented and kept under review with regard to equitable access. Demand has increased for funding since legislation commenced…"

Staff Resources

  • Three boards highlighted amendments to staff resourcing.
  • One area highlighted remaining concerns about the previously reduced staffing compliment of core teams. This was in contrast to another area reporting an infrastructure that included AAC Champions, robust supervision and good governance to support clinical decision making, all contributing to ways in which staff are supported.
  • One further area advised, 'the workforce are committed to getting processes right, and staff are working to empower service users and their families and circles of support through the widely adopted use of universal support measures for communication'.

2.1.3 Contributions from health boards who hold the legislative duty

Scottish Government Assisted Communication policy officials invited contributions from health boards for inclusion within this progress report. Further detail is available at Annex C.

2.2 Support Tools

To support delivery of the legislative duty a suite of tools have been developed. AAC Executive Leads from the Health Boards strongly supported this work, nominating a range of participants to include AAC Specialists and expert practitioners to work alongside those from education, special interest groups and other perspectives having an interest in AAC.

2.2.1 Publication of Guidance

Guidance on the Provision of Communication Equipment and Support in using that equipment was published on 31 May 2018. This provides practical information on the use of communication equipment, the support needed to use this equipment, and a shared vision and principles. It is hoped the guidance will be helpful to people who currently, or in the future, may use communication equipment, their families, practitioners and partner agencies who are supporting them, as well as those responsible for delivering the legislation. Informal feedback from managers and practitioners indicates this guidance has been well received. An easy read version was published on 24 October 2018.

2.2.2 Publication of National AAC Core Pathway

The National Augmentative and Alternative Communication (AAC) Core Pathway has been developed in partnership with boards and was published on 31st August 2018. The pathway sets out what service users can expect from their AAC journey – incorporating information on assessment for, and provision of, communication equipment and support in using that equipment.

The launch of the tools was supported by NHS Inform and cascaded through wider networks to raise awareness. The tools have been well received by a broad range of stakeholders with positive feedback from people who use AAC, practitioners and their networks, and services.

"The AAC National Core Pathway has been an essential guide as part of an induction period for new staff and students. It outlines the key features which are important including: assessment, medium to long term loan of equipment and the importance of review and monitor for any AAC system.

I have also used the Core Pathway in discussions with families and carers when introducing a new AAC system. It can provide reassurance that there is a standard framework……we are working within." Deborah Jans, NHS Lothian, Keycomm Specialist AAC Service.

2.3 Awareness Raising

2.3.1 Examples of local activities

NHS Forth Valley conducted a survey of staff, to explore their awareness of the legislation within the Speech and Language Therapy (SLT) workforce. The results of that work were shared with the National AAC Advisory Group as an example of good practice. Forth Valley AHP Senior Managers have since built on this work in the following ways:

  • Delivered refresher training and continue to plan for ongoing updates.
  • Refreshing staff's awareness of the Forth Valley AAC Pathway.
  • Encouraging greater use of and engagement at an earlier stage with the Forth Valley Team of AAC Champions, who are available to support and provide guidance to all SLT staff.
  • Continuing to explore access to greater technical support including programming of devices.

NHS Lanarkshire working across Speech and Language Therapy and IT raised awareness of the one year anniversary of commencement through publicising this on PC desktop backgrounds on all NHS Lanarkshire devices, ensuring all board employees who accessed an NHS Lanarkshire computer received that message.

Some boards expressed a need to target awareness raising, in such a way as to effectively inform people who may want to access this provision. They advise this requires clear advice on what the local pathway is and information on who is most likely to benefit, to promote appropriate referrals and ensure effective signposting to advice.

These processes are in keeping with the approach set out in a Right to Speak[4] ensuring those who need communication equipment will be aware of their rights and appropriately signposted.

2.3.2 Examples of National Activities

NHS Inform has hosted a web page containing information on:

  • Commencement of the legislation.
  • The support tools and;
  • Contact details for the policy team.

The page https://www.nhsinform.scot/campaigns/1st-anniversary-of-aac-legislation has been in place from the anniversary to November 2019.

NHS Education for Scotland who host the nowhearme website have supported awareness raising through messaging on the blog page of the site, signposting viewers to find out more on the NHS Inform web site and on the ScotGovHealth twitter page.

2.3.3 First anniversary of Commencement of the legislative duty

Scottish Government carried out the following to support activities leading up to and during this period.

  • Attended the meeting of the AAC speech and language therapy (SLT) leads network in June of 2018 where members were asked to invite expressions of interest from people who use AAC to tell their story about what the legislation and the provision of communication equipment meant to them. The SLT leads representative from NHS Lothian helped collate the four stories that were submitted alongside a poem which was produced by a person who uses AAC and a collection of quotes from a number of AAC users. Supporting documents refer.
  • Worked with Communication Healthier colleagues to provide a short video of quotes from patients as well as an AAC users story:

Video of quotes: https://twitter.com/scotgovhealth/status/1107984714890133505

AAC user's story:

https://twitter.com/scotgovhealth/status/975753067156078593

  • On 27 March 2019, the Minister for Mental Health, Clare Haughey MSP carried out an engagement visit to the NHS Fife AAC (FAACT) Service. This included an overview of the service, as well as a meeting with an AAC user to hear about the impact having a communication aid can have on their day to day life. https://twitter.com/haughey_clare/status/1110881015625584640

Keycomm (NHS Lothian) took part in activities to raise awareness of AAC and the legislative duty through an exhibition stall at the Annual AAC Study Day in March 2019.

Attendees were invited to contribute feedback on whether the legislation had made a difference, the main themes highlighted included:

  • Areas developing local policies and pathways where previously these did not exist.
  • Waiting times greatly reduced, easier to get permission to purchase equipment.
  • There is easier access to funding.
  • People are more aware but information needs to be shared more with people working with AAC users and their advocates.

"To those people who potentially need equipment this legislation will have hopefully been a positive difference to them".

"Raising awareness of services required will make it better".

This work further builds on that of raising awareness of AAC as set out in a Right to Speak stating:

"Services should at all times be identifying need even if needs cannot be met within existing resources".

2.3.4 Contributions to other Scottish Government Reports (Raising awareness of the legislative duty)

The contributions the Assisted Communication policy team made to other publications are included in the following:

  • Supporting disabled children, young people and their families' guidance under the heading of Inclusive Communication. Details on the legislative duty, support tools of the definition of communication equipment and support guidance, the national AAC core pathway and information on what is AAC were included. The guidance was published on 24 April 2019.

https://www.gov.scot/publications/supporting-disabled-children-young-people-and-their-families/pages/inclusive-communication/

  • Progressing the human rights of children in Scotland: 2018 report

A section on communication equipment and support, which details the legislative duty, guidance on the definition of communication equipment and support and the national AAC core pathway, were included in the report on progressing the human rights of children in Scotland, published on 20 December 2018. https://www.gov.scot/publications/progressing-human-rights-children-scotland-report-2015-2018/

  • Patients' Rights

The Person-Centred and Quality Team within the Healthcare Quality and Improvement Directorate carried out a review of the Charter of Patient Rights and Responsibilities for which the Assisted Communication team provided a contribution on the duty to provide or secure communication equipment and support, with reference to the easy read version of the Guidance on the Definition of communication equipment and support [which sits under the heading of communication support (page 12)]. The charter was published on 27 June 2019.

https://www.gov.scot/publications/charter-patient-rights-responsibilities-2/.

2.4 Data and Evidence: Population Analysis

2.4.1 Background

"Having an estimate of the numbers of individuals who may require a service not only assists in planning and commissioning of that service but also is important in order to identify unmet need and inequity of provision".[5]

The overall purpose of improving the availability of data and evidence is to ensure that the AAC population (defined here as people who could benefit from AAC) have access to, and benefit from, the AAC provision to which they are entitled under the legal duty.

Building a Scotland-wide picture of information on the population has the potential to be used for the benefit of people who need AAC, and over time, to monitor progress against the duty. This may include the opportunity to:

  • Improve identification of the AAC population to appropriate service providers, in order to ensure that they are offered the signposting, to services such as assessment, advice and any necessary interventions to which they are entitled under the legal duty.
  • Support services to monitor their AAC provision.
  • Enable analysis of the AAC service user demographics and underlying diagnoses, in order to identify potential unmet need and inequalities in access to services.
  • Support capture and monitoring of AAC service user outcomes.

(Further explanation of the terms used in this report in relation to Data and Evidence is available at Annex D)

At present there is no reliable data available or consistent infrastructure in place to support gathering the numbers and characteristics of people who use AAC in Scotland, or advise reliably and consistently on the detail of costs associated with the purchase of the communication equipment or the personal outcomes achieved.

The Scottish Government, building on previous work from a Right to Speak, has undertaken extensive engagement pre and post commencement of the duty. This has included visits and discussions with Health Boards across Scotland and with providers of potential sources of relevant data and evidence, including other Scottish Government policy areas with a relevant interest. Examples are:

▪Strategic Planning (neurological conditions i.e. MND, Parkinson's; Stroke);

Strategy and Delivery for Dementia; Pupil Census; Allied Health Professionals (AHP's); e-Health/Digital and; Workforce Planning.

▪Organisations including NHS National Services Scotland (NSS), SEEMiS and, health colleagues within the Welsh Government, NHS England and commissioned services in England.

(Refer to Annex E for further detail on policy engagement and activity).

2.4.2 AAC Prevalence and Unmet Need

The Scottish Government health and social care analysts have engaged in detailed work on prevalence since August 2018, undertaking analysis from existing available published research. This has included drawing on a broad range of information and advice from stakeholders, for example, Bobath Scotland, RCSLT, MND Scotland, Parkinson's UK, and crosscutting policy teams with an interest, in addition to information snapshots on AAC clients already known to services.

Extrapolations from UK research[6]/[7] on the estimated prevalence of AAC need in the population highlights the disparity between the AAC population we are aware of, and the population not known to services but who may benefit from communication equipment and support. Research[8] estimates

"… just over 0.5% of the UK population could benefit from some type of AAC" and "… approximately 0.05% of the UK population could benefit from powered communication aids".

In Scotland, with a population of approximately 5.4 million[9], this would equate to around 27,000 benefiting from some type of AAC, with 2,700 benefiting from powered communication aids.

Research shows that over 97% of people who could benefit from AAC have one of the following nine medical conditions: dementia, Parkinson's disease, autism, learning disability, stroke, cerebral palsy, head injury, multiple sclerosis and motor neurone disease7. The proportion of people with these conditions who could benefit from AAC varies by condition. However, patients with these diagnoses are not necessarily 'flagged', recorded or recognised[10] as having a potential communication need which may require to be assessed, or as receiving AAC services. Therapists often prioritise recording the person's primary communication disorder rather than their underlying diagnosis.

Local professionals recognise that there is insufficient information available on the population of people who need and use communication equipment. Some have advised that the diagnostic profile of their AAC clients does not match the estimated AAC population profile, drawing on the research evidence cited above. This suggests that some population groups are not accessing services, or initiating requests for assistance or referrals, assessments or services.

Where people are not aware of their rights or that help may be available, they are unlikely to make that request of services.

In 2017 and again in 2018, Scottish Government invited health boards who hold the duty to carry out a snapshot count to capture information on the numbers of people engaging with services. The one off snapshot approach was selected by the National AAC Advisory Group as their preferred means of information capture, given the existing system constraints.

In 2017, health boards reported 2,784 people who use AAC, of whom around 2,023 people were using high tech aids [not all areas reported the low tech users].

In 2018, a further snapshot was undertaken (including people who used high tech and low tech equipment). In response, reported numbers rose to 4,486.

There are no known reasons why there would be a sudden increase, but it is likely that this is a reflection of boards' increased efforts to identify those people who were previously, as well as currently, known to services and to include users of high tech, and/or low tech aids. However, the gap between estimated prevalence and snapshot survey data suggests some unmet need.

Activities to build on this work, using other means to capture progress from service delivery within health boards and information and statistic experts have been taken forward and further information is detailed below.

2.4.3 Data and Evidence Workshop for Health Boards in December 2018

In December 2018 Assisted Communication policy officials hosted a workshop for NHS Boards who hold the legislative duty. The workshop comprised of presentations from a Scottish Government eHealth national clinical lead and NSS staff implementing the rollout of the Allied Health Professions Operational Measures (AHPOMs), as well as working group discussions and the review of potential data items.

The purpose of the workshop was to identify practical, achievable steps which could be taken or recommended to identify the AAC population; propose a minimum dataset for people receiving AAC services; look at ways to improve data collection, recording and reporting and to achieve a broader understanding of information being a means to evidence the delivery of the duty.

There is now a level of understanding among local AAC Executive leads and some practitioners, that information is required by health boards to evidence that they are delivering the duty, in a way that is transparent and accountable in relation to that duty. Refer to Annex F for outcomes from the workshop.

Additional information providing context to data and evidence in relation to previous reports and recommendations is available at Annex G with information on other data challenges being available at Annex H.

2.4.4 Short Life Working Group (SLWG) on Data and Evidence

In response to stakeholders' ongoing requests for information such as waiting times, numbers of people assessed and provided with equipment, and timeliness of provision, the National AAC Advisory Group was invited to nominate representatives to a SLWG on Data and Evidence, with membership confirmed in the winter of 2018.

The aim of the group was to provide membership of the National AAC Advisory Group with advice on what information is feasible to capture and which will provide evidence of the extent to which the duty is being met.

The first meeting of the SLWG was held in January 2019, and followed on from the data and evidence workshop described above. Future meetings of this group were to be aligned to the availability of relevant commissioned reports, such as the NSS report, detailed below and the AHP National LifeCurve™ Survey – Analysis of Communication Support question described later on in this report. [See 2.4.6]

Following advice from AAC Executive Leads and the learning from the workshop this has added to the growing understanding of the complexity of the systems and challenges in reporting on the population of AAC users, and further engagement with NSS is recommended.

In February 2019 Scottish Government met with the Associate Director at NSS, in the context of no further avenues being available to explore, health boards having no vehicle in place to statistically evidence the duty and following advice from AAC Executive Leads to secure a public health perspective, seeking their support to progress this work.

2.4.5 NHS National Services Scotland Report

'Scoping the Possible' Report by NHS National Services Scotland (NSS)

(See Supporting documents)

Scottish Government commissioned NSS to undertake a scoping exercise to explore what, if any, potential there was for existing healthcare and other services data systems to:

  • generate routine data to contribute to evidencing progress in fulfilling the legislative duty.
  • use a public health approach to identify the total population who might benefit from AAC.

The exercise took place in May 2019 with findings detailed below:

Over-arching findings: Currently NHS and other relevant services' electronic and other data collection systems are unable to generate comprehensive and consistent data about the AAC population and current service users. Therefore, it is not possible to extract data which could enable NHS Boards robustly to assess their progress against the legal duty, and which could be aggregated to show the picture for Scotland. Thus evaluation of hard data is not currently possible, therefore this report seeks to capture progress across all work streams to date.

Key issues include:

  • AAC service provision or relevant underlying diagnostic data can be recorded in multiple data systems which do not link to each other: e.g. including potentially NHS (primary care, community services, secondary care); Local Authority (via Community Care Assessments or Education services), third sector contracted service providers.
  • Under-recording of medical conditions associated with AAC. If such conditions are not recorded by GPs' in primary care data systems, a patient's potential to benefit from AAC might not be identified. If that patient is admitted to hospital, and their condition is not relevant to the primary cause of admission, their possible AAC needs might not be recorded.
  • AAC population not automatically identified as such in NHS and other records. There is no automatic method of 'flagging' an individual with a condition associated with AAC, or who is currently receiving an AAC service, or who has previously received an AAC service but has been discharged.
  • NHS Boards and Local Authorities (LAs) - data collection and recording: variation in electronic data recording systems used and AAC data recorded between and within Boards and LAs. Extensive use of manual recording systems (e.g. paper records, local spreadsheets) by Speech and Language Therapists (SLTs) who deliver AAC services.
  • EHealth/ IT resource / capacity: constraints within NHS Boards and LAs would limit the extent to which IT system and other issues could be addressed.
  • Information governance requirements: would require considerable local resource to work through what level of personal data would be required to assess progress against the duty (e.g. anonymised or identifiable); and to secure permission to access identifiable data if considered appropriate.

To continue to promote ongoing engagement, AAC Executive Leads were invited in July 2019 to provide an initial round of strategic level, qualitative feedback, highlighting areas from the scoping report that were important to them or their boards.

Feedback received is as follows:

  • There is support for the general direction of travel to improve data and evidence and thereby bring a better understanding of this population. This needs to be underpinned by further work, provide clarification on the purpose of future data capture and how it would be used. Investing in data capture must demonstrate clear benefit and better outcomes for the people who need and use communication equipment. A more detailed explanation of how improved evidence could benefit the AAC population is at Annex E.
  • A better understanding of where these recommendations sit in relation to other priorities at a time of significant resource constraint is also required. It may be helpful to have a clear articulation setting out why AAC Data and Evidence is a priority at this time. Again, refer to the explanation set out at Annex E.
  • Some accepted the value of taking a public health approach to this work, while others highlighted concerns about the potential for impact on existing services from any increased demand. The majority of Boards have taken steps to highlight the duty and access to services.
  • The need to protect the capacity of the workforce to see patients was highlighted with any new or different undertaking of local capture and analysis of information, requiring appropriate support.
  • Boards requested further work with GPs' in relation to coding, recording, feasibility of processes, along with the need for advice and consultation with others who would be directly inputting to systems to achieve robust recording and reliable data. Scottish Government will be taking this forward as part of the future data and evidence work.
  • Some boards specifically supported implementation of a minimum dataset: i.e. a specified set of data items which would be recorded consistently for each AAC service user. However, there was very limited feedback supporting the development of a national register which was one of the future options raised in the NSS report. There was limited and balanced feedback for and against further manual capture of information.
  • Concern was expressed around information governance in respect of ensuring the identity of those most vulnerable, particularly from small populations. It should be noted that this data would only be used by health and care staff entitled to access it, in order to ensure that the AAC population are offered the signposting to services, assessment and intervention where appropriate.
  • A few boards commented on the omission of qualitative data on user experience from the scoping report. This was out with the scope of the report and this will be taken forward by Scottish Government in the refreshed national work plan under communications and engagement. However, service user experience data can only be explored if mechanisms are in place where service users are identified and known to services. Therefore, a systems based solution may be a necessary pre-cursor to undertaking such work in a robust, reliable and credible way.
  • The report findings were presented by NSS to the SLWG on data and evidence meeting on the 10 October 2019, with all members invited to submit their comments in advance of the meeting, enabling contributions from the full group.
  • Members prioritised the options and recommendations from the NSS report, identifying three preferred aspirations, in chronological order being the establishment of the following:
    • National AAC minimum dataset – to underpin consistent recording of need.
    • Registers of specific diagnostic conditions associated with AAC – to ensure that each of the conditions most likely to cause an individual to have a communication need, have the scope to capture AAC needs within their infrastructure.
    • Specific Register for AAC - recording the needs of people from across all care groups regardless of age who need and use AAC.

The section 'Looking Forward' at para 3.3.2 sets out the plans to further progress work in this area.

2.4.6 Engagement on potential sources of data and evidence

Scottish Government

Education Analytical Services - Whilst there was useful information within the Pupil Census, which was able to identify the number of pupils (those with a record of need) who required a communication adaptation under the Additional Support for Learning Legislation, there was no information available which captured further detail on children and young people in education who need and use communication equipment.

Allied Health Professionals (AHP) policy leads within the Chief Nursing Officers Directorate (CNOD) advised on the potential relevance of the AHP Operational Measures Dataset, delivered by NHS National Services Scotland (NSS). The purpose of the AHP dataset is to collect a standard set of data items about AHP's and the clients they see.

Through the successful delivery of AHPOMs there will be data available that can:

  • provide insight into the demand and volume of AHP contact with individuals;
  • allow exploration of variations in service delivery and outcomes;
  • highlight opportunities for service improvement.

Further information is available at https://www.isdscotland.org/Products-and-Services/Data-Definitions-and-References/Allied-Health-Professionals-National-Dataset/Operational-Measures.asp

The inclusion of AAC among these data items could improve the availability of data about people receiving AAC services from AHP's. However, NSS have confirmed this is out with the scope of the current rollout phase. It is intended that once the new Chief Health Professions Officer takes up post in CNOD in January 2020, work on the AHP Operational Measures dataset will be revisited as it is recognised there is currently variation in collection of the data by health boards.

In the meantime, AHP policy leads in CNOD have supported engagement with the AHP Directors national network, raising awareness of the duty on communication equipment and support and signposting towards workforce policy colleagues in relation to workforce planning advice.

National AHP LifeCurveTM Survey - Further discussions with AHP policy leads also highlighted and provided an opportunity for inclusion of a Communication Support Needs question (see below) within the work they were taking forward as part of the Active and Independent Living Program (AILP). AHP's undertook a National LifeCurveTM Survey (May 2017) which aimed to provide a unique understanding of where AHP's can concentrate efforts, strengthen existing and identify new partnerships, develop innovative interventions across the life-course to shift towards all levels of preventative and anticipatory care and contribute to addressing health inequalities. The survey took place in adult services, across all sectors and all AHP groups.

Communication Support Needs Question in the LifeCurveTM Survey:

'Do you have any communication support needs e.g. hearing or low vision aid, interpreter, large print, easy read, communication aid – Y/N/Not Applicable'

In January 2019, to progress analysis of people who responded 'yes' to the Communication Support Needs question within the LifeCurveTM Survey the Scottish Government appointed a PhD intern for 3 months from the Scottish Graduate School of Social Science. The results of this analysis have been captured within the Health and Social Care Social Research Report[1] published on 18 October.

The complete survey results (approximately 15,000) will be linked with other data to enable a comprehensive 'snapshot' of where people are on their own LifeCurveTM and when they are seen by an AHP, which will be used to inform, focus effort, and promote innovation and intervention in addressing health inequalities.

Given the progress of Health and Social Care Integration and the changes this may bring, this needs to be a future consideration, with access to advice from COSLA and Social Work Scotland via the National AAC Advisory Group in the future capture of data.

Third sector organisations - such as Bobath Scotland, Parkinson's UK, MND Scotland and professional groups such as the Royal College of Speech and Language Therapists (RCSLT) have also shared information to help understand what systems were in place to capture information from within those organisations, and what is feasible to source from their data systems.

Valuable discussions and experience gained by the third sector in the development of their systems highlights some of the challenges involved, for example:

  • the commissioning of a unique system;
  • governance and ownership of information;
  • can take years to develop;
  • time required of practitioners;
  • cost of software development;
  • lack of interface with existing systems – which may then require information to be entered twice;
  • availability of reporting, and variable uptake by practitioners.

The Scottish Government is grateful to those organisations for sharing their advice and expertise. However, the challenges they experienced highlight the complexity of information held and that the detail doesn't lend itself to evidencing progress in delivery of the legislative duty, as those systems were not specifically designed for that purpose.

2021 Census - Working with the Census 2021 team, Scottish Government policy officials and health and social care analytical colleagues raised awareness of the legislative duty and supporting tools available, to improve the knowledge and understanding of those who will have face to face engagement with people who use AAC and may require support to complete the Census.

This initial piece of work resulted in the development and submission of a proposal to the "question team" within Census 2021 for inclusion of a question on AAC, worded as:

'Full or partial loss of voice or difficulty of speaking' category, within the Long Term Conditions question.

Ongoing discussion has led to further work on supporting the model for online testing of the question and promoted this across AAC networks, to encourage sufficient response rates and meaningful comment to inform further refinement of the proposed question.

Whilst this question will not identify people who need or are using AAC, the benefits of inclusion of this question (subject to parliamentary due process) are that it will enable analysis of the population with loss of voice or difficulty speaking by other characteristics – for example, their demographic profile, living arrangements, employment status, self-reported health.

The Census 2021 team will update on progress and the outcome of the parliamentary process for Census in due course.

2.5 Procurement of AAC equipment

2.5.1 Background

The main focus of AAC procurement has been to develop and refine the means to evidence people are accessing services and where appropriate being provided with the necessary equipment.

In 2017 and 2018 information at a national level was provided from NSS in relation to suppliers and equipment purchase of communication equipment. Boards confirmed the exercise did not fully take account of all expenditure (both within the NHS, and that purchased via education or via Health and Social Care Partnership arrangements within community stores) on communication equipment. A further trawl by NSS pulled retrospective spend on equipment, and using that further detail and in dialogue with boards, highlighted the opportunity to consider the current processes with a view to options to refine to improve data quality.

AAC is procured through different agencies using different arrangements to provide communication equipment to people who need and use it, in both health, community and educational settings.

It is not currently possible to robustly and consistently identify and aggregate expenditure on the communication equipment being purchased and used to fulfil the legislative duty.

The existing arrangements for gathering information from boards, do not currently lend themselves to providing reports to support monitoring of expenditure, highlighting the potential impact of new products, emerging trends and the recycling of resources.

The exception to this would be where arrangements are in place within community, for example, most mainstream integrated community equipment services use custom designed IT systems which does provide this level of scrutiny, and management information which informs procurement, financial monitoring and analysis of trends and budget pressures. However, the procurement of most AAC equipment sits out-with these arrangements.

2.5.2 SLWG on AAC Procurement

A SLWG was established with representation to improve the consistency and transparency with which communication equipment is procured. Representation to the SLWG group is made up of specialist and generalist SLT practitioners, medical physics, an education senior manager, community equipment store leads, NHS national procurement advisors, with advice and support available to the group from the additional support needs network Association of Directors of Education in Scotland, the Technology & Information Transformation Lead from NSS, and policy officials.

The aspiration of the SLWG is to support boards to evidence in a consistent way the resource commitment to AAC equipment and to invite contributions from local authority and the third sector to build a more comprehensive picture of expenditure in this area.

This SLWG group carried out the following actions, updating the National AAC Advisory Group meeting on 17 June 2019:

  • Identified the product suppliers for high tech AAC equipment.
  • Confirmed a list of the "top ten" high cost AAC products as the basis for an AAC equipment catalogue, to be further developed by National Procurement in partnership with Boards and their practitioners, recognising this is not a fully comprehensive list.
  • Confirmed the product codes for these products.
    • This will enable NSS to identify information in a retrospective search of items ordered, giving partial evidence that equipment purchase is taking place by NHS Boards. It is also recognised the list of products and codes is incomplete and therefore the search will only reflect health procurement of these items of equipment.
  • Created a proposal for local amendment to NHS PECOS systems that will improve transparency in ordering equipment,
  • Explored the complexity of financial coding options and their merits and limitations.

In addition other steps taken by the group:

  • Engagement with Procurement Information Lead at NSS to provide ongoing advice and expertise.
  • Set out to the National AAC Advisory Group that in future boards may wish to explore the full range of opportunities available from systems and technology across agencies that will provide evidence of the timely provision of equipment, tracking and recycling, in keeping with the duty.
  • Secured senior IT advice to this group to consider a local policy development in relation to mobile devices (which includes devices for patient use) in the hope this may inform the national provision of these devices.
  • Gained support from AAC Executive Leads to introduce an initial communication equipment catalogue to make the future order of communication equipment more transparent for all health boards.

Work progresses in partnership with National procurement to address the issue set out above and continues to be led by a refreshed membership of the AAC Procurement group to reflect the broader spectrum of local authority interests.

In preparation for the introduction of an initial communication equipment catalogue and a user defined field on PECOS, three health board areas have agreed to participate in a pilot, to be led by NHS Highland with NSS. This will test the impact of the proposed change and inform the next steps for the roll out along with advice and information to operational staff.

2.6 AAC Learning Support

2.6.1 Background - An Introduction to AAC Modules

This work builds on A Right to Speak, where NHS Education Scotland (NES) was identified as a key partner in facilitating the delivery of many of the recommendations; one of which was to help deliver an education, training and development programme.

As part of this commitment, in April 2019 the first in a series of online learning modules, 'An Introduction to AAC'[11] was made available on the new NHS Education for Scotland's (NES) learning and support resources platform, TURAS.

These Scottish Government funded modules, commissioned by NES and developed by CALL Scotland are designed for use by anyone (universal uptake), and are aimed at any broader health, social care and education staff who may come into contact with people and their communication partners, who need and use communication equipment. Members of the public can also access these modules at https://learn.nes.nhs.scot/

2.6.2 Short Life Working Group (SLWG) on AAC Learning

In terms of next steps, work is ongoing to make further modules commissioned by NES as part of a Right to Speak available in future on TURAS in a staged approach, which will include:

  • AAC in Education from CALL Scotland, supporting learners with complex communication support needs in school;
  • AAC Assessment and interventions from Manchester Metropolitan University and;
  • AAC Technology from Dundee University.

All modules are aimed at services, teams or individuals to support development of current knowledge and best practice, underpinned by the self-assessment approach in Individual Profiling of AAC Knowledge and Skills (IPAACKS)[12] to ensure positive outcomes for people who use AAC.

A Short Life working group has been established to encourage the uptake of AAC learning and to raise awareness in particular, promoting and making use of the online learning resources hosted on TURAS to ensure availability of a consistent means of reporting, to inform a Scotland wide picture.

2.7 Section 10 Grant Funding 2018/19

In April 2018, applications were invited to the Scottish Government Section 10 grant fund which demonstrated how organisations would contribute to delivering outcomes related to the implementation of the Communication Equipment and Support legislation and the wider work programme on Augmentative and Alternative Communication (AAC) and/or See Hear Strategy for people with sight loss, deafness and dual sensory loss, all of which the Assisted Communication team lead on.

Twenty three applications were received, resulting in 8 successful applications, evenly distributed across both policy areas, 4 of which were in relation to AAC totalling £57,643. (Further details and outcomes achieved are available at Annex I)

2.8 Section 10 Grant Funding 2019/20

In March 2019, applications were again invited to the Scottish Government Section 10 grant fund which demonstrated and met the same criteria as set out in the 2018/19 application process.

Ten applications were received, with all applications being scored against an assessment criteria and resulted in eight successful applications, three of which were in relation to AAC, totalling £34,505. (Further details are available at ANNEX J)


Contact

Email: heather.palmer@gov.scot