- In 2015, the Royal College of Speech and Language Therapists (RCSLT) and the British Dietetic Association (BDA) were invited to join the IDDSI Expert Reference Group set up by NHS England to discuss the implications in relation to the publication of the International Dysphagia Standardisation Initiative (IDDSI). This group includes representatives from other professional bodies, catering and manufacturers.
- This is a global project and the overall aim is to increase safety through bringing all manufacturers and consumers into consistent practice by moving away from the subjective UK National Descriptors to IDDSI Levels. IDDSI Levels are defined by measurement, including a flow test for Levels 0-3, spoon/fork tests and particle size limits for Levels 4-6. For more details refer to the IDDSI website: http://iddsi.org/
- The RCSLT and the BDA have consulted with expert advisors and their members through surveys disseminated via member networks. The results of these surveys informed the decision by both organisations to adopt IDDSI in October 2017. The RCSLT and the BDA have provided updates via their professional magazines to members on this work.
- The IDDSI website lists other organisations, including professional bodies in other countries that have also agreed to adopt IDDSI.
- The IDDSI Expert Reference Group agreed to a phased implementation plan which would commence in April 2018 with full implementation by April 2019. During this phased implementation it was agreed that tools and resources would be developed and shared online via the IDDSI website and the RCSLT and BDA websites.
Feedback from members on the implementation of IDDSI and risks to patient safety
- Some RCSLT and BDA members have been working in partnership with health colleagues, manufacturers, catering, care homes, pharmacy and other groups to raise awareness and provide training to support implementation at a local level. However, concerns raised by members include:
- Manufacturers issuing advice to prescribers/users that speech and language therapists (SLTs) should reassess all patients and provide training across all sectors and settings. SLTs are commissioned to provide specific services, and so this expectation is not realistic or acceptable.
- The lack of a co-ordinated approach locally and nationally to support implementation across a range of providers, including hospitals, nursing and care homes, rehabilitation units, social care units and educational settings, as well as individuals in their own homes.
- The implications for some care homes where a range of thickeners may be used for different patients and the potential confusion this may cause, as some manufacturers have changed their instructions to comply with IDDSI, while others have not.
- Concerns for those individuals living alone or unsupported as they may not be able to fully understand the changes, with consequential risks to their health.
- The inability to directly correlate the stages used in the UK National Descriptors with the new IDDSI Levels for some products where instructions have changed. As a result, a drink may be thicker or thinner than the patient was previously prescribed.
- Different approaches by manufacturers which can lead to confusion. Thickener companies are moving directly to IDDSI labels from April 2018 onwards. However, some food manufacturers are putting on transitional labels showing both the current UK national descriptors and IDDSI for a period of time.
Action by the RCSLT and BDA
- We have written to manufacturers and the British Specialist Nutrition Association Ltd to raise concerns on behalf of our members about the potential risks to patient safety.
- We have been asked to recommend that members with questions around individual product labelling should contact the relevant manufacturer. We would also recommend that they contact the individual manufacturers for details about the support they can provide, for example leaflets, posters, videos and training.
- We have asked Dr Ben Hanson, who is on both the IDDSI Expert Reference Group and the IDDSI Board, to review concerns raised by members on changes to product guidelines, and he has developed a PowerPoint presentation that provides an overview of the comparison of IDDSI with the UK National Descriptors. It would be useful to have feedback on this, including the need for any additional or explanatory material. It is hoped that this can be used by members and adapted locally as required. The RCSLT and BDA recommend that members also view the IDDSI website, which provides further tools and templates for local adaptation during the phased implementation.
- We are now working with relevant partner organisations in the UK in relation to any potential concerns about patient safety. To date we have heard from colleagues in NHS Improvement (England) who have agreed to disseminate information regarding the ambition to implement the IDDSI definitions, and the potential risks with regard to implementation, through:
- Directors of Nursing
- Allied Health Professional (AHP) leads in provider organisations
- The NHS Improvement provider bulletin
Proposed action at a local level to support a system-wide approach to implementation and to maximise patient safety
- We are aware that patients who use thickener products may be receiving care in a range of settings, from hospitals and care homes to their own homes, and may no longer be in contact with speech and language therapy or nutrition and dietetic services; therefore, communication about IDDSI needs to be far-reaching and accessible to all health and social care professionals and staff, including community pharmacists, GPs and care home workers. In terms of local implementation and action, and in discussion with manufacturers and relevant partner organisations, we would recommend:
- Concerns about patient safety risks are raised through your organisation’s governance structures, eg Quality Patient Safety Governance, to ensure that they are appropriately assessed with a risk score before and after mitigation. (We are aware that there are risks with the use of the current UK National Descriptors, including non-compliance and overuse of thickeners.)
- Members escalate the need for a co-ordinated system-wide approach to developing a local implementation plan at board level within their organisation. This may be through Directors of Nursing, AHP Leads/Head of Quality (or equivalent). This plan would need to include a range of stakeholders, including local care homes, Clinical Commissioning Groups (CCGs), other NHS organisations, GP practices and community pharmacies.
- As NHS Trusts/providers have contracts with specific manufacturers, we would also recommend that members (or the appropriate senior manager) contact the relevant manufacturers to raise any concerns directly, and work together with them to ensure that patients/service users continue to receive great care and are not at risk of harm. Given the range of thickener products available, some providers are considering whether to change products to one that they consider is more suitable.
- We understand that some contracted manufacturers have written to NHS organisations and services to offer support with implementation of the use of their products, including training and a helpline. Members should check with their employer to find out if this has been offered.
- A whole system approach to implementation has been found to be effective by manufacturers who have been involved with early adopters and who are also committed to supporting the development of local implementation plans. This includes training for staff to help with the transition to any changes in instructions on the use of products in line with IDDSI. For a checklist, visit: https://www.rcslt.org/clinical_resources/dysphagia/iddsiimplementationchecklist
- To help with sharing approaches to dissemination, case studies are provided in Annex A of this document. Areas such as Greater Glasgow and Clyde, Hull and East Yorkshire and East Sussex are using this whole system approach to implementation. SLT leads in these areas have indicated that they are happy to be contacted (via the RCSLT), if needed.
- In addition, in order to support approaches to the implementation of IDDSI, we would suggest that members:
- Join IDDSI to access the latest information, including resources and training, eg webinars – http://iddsi.org/
- Regularly check the RCSLT and BDA websites for the latest information, FAQs, implementation schedules, training presentations and appropriate links: https://www.rcslt.org/clinical_resources/dysphagia/dysphagia_diet https://www.bda.uk.com/professional/practice/international_dysphagia_diet_standardisation_initiative_framework
- Set up and attend relevant RCSLT clinical excellence network (CEN) meetings to support the sharing of best practice.
- Consider joining IDDSI webinars to be jointly run by the BDA and RCSLT.
- Send the RCSLT and BDA examples of best practice approaches that can be added to the website – email email@example.com and J.Instone@bda.uk.com respectively.
- Work together with other colleagues in their region to support implementation.
- Contact the RCSLT or BDA if they have any concerns about the IDDSI framework: firstname.lastname@example.org and J.Instone@bda.uk.com
Annex A: Case studies
NHS Greater Glasgow and Clyde
In NHS Greater Glasgow and Clyde (GGC), we have decided to focus on awareness-raising and implementation. We plan to take a pragmatic approach to raising awareness of the change rather than a traditional ‘training’ approach, given there is no change to the product.
The manufacturer had not appreciated the size of GGC (400 wards and approximately 300 care homes care homes, with 2,100 patients on thickener products). Following a meeting, the manufacturer has now provided a full-time member of staff for six months to support rollout of awareness-raising of the changes. They have also developed, and will assist with printing, several information documents for staff and patients, which we can edit.
We have also established a board-wide multidisciplinary steering group, chaired by Catherine Dunnet, Clinical Service Manager for Speech and Language Therapy, which reports through the Food Fluid and Nutrition groups. A project manager has been appointed to manage change, and a staff member from the manufacturer sits on the steering group.
SLTs’ concerns are mainly related to the ‘read across’ from the UK National Descriptors to the IDDSI framework. This has mainly been as a result of the significant alteration in the amount of product used to change from Stage 1 to level 2. This needs to be balanced by the fact that we had very little evidence for our current approach and no method of auditing consistency of practice. To ease concern we are hosting a large number of drop-in sessions on our eight acute sites, for speech and language therapy, nursing and dietetic staff to hear the presentation and scientific evidence and experiment with the flow tests.
We are promoting the view that, not only is the terminology improved and consistent internationally, but we also now have a science behind the consistencies, and this will support future audit and research.
In East Sussex, we have established a strategic planning group, led by Anita Smith, Consultant Speech and Language Therapist, and an operational group with broad representation, including pharmacy, dietetics, catering, manufacturers, medicines management, communications and quality improvement. We have taken the perspective of raising awareness rather than training. With the support from the manufacturer of the product we use, we have set up three awareness streams:
- Bookable places at specific events for any community service, nursing home, care home, etc
- Specific sessions at high-user areas, such as nursing homes with a high number of patients on thickener
- A trolly service in our hospitals
We have designed letters for professionals, such as GPs, medical, nursing home and intermediate care centre staff. We have also designed letters for patients known to service and those not known to service, which will go out with their prescription.
We are doing a small-scale assurance project looking at the amount of thickener required for Stage 1 (UK National Descriptors)/Level 2 (IDDSI), as this is the greatest change for the product we use. We hope that, if this project provides assurance that the clinical signs are the same with both levels, we can recommend patients transfer from Stage 1 UK National Descriptors to Level 2 IDDSI without further assessment. We plan to reassess all Stage 2 UK National Descriptors/Level 3 IDDSI patients, and we will be advising all Stage 3 UK National Descriptors/Level 4 IDDSI patients to move across without further assessment. On all patient letters, signs and symptoms are clearly written, with details of who to contact if they have difficulties.
We are taking a multifaceted approach to communications both internal and external to the Trust. We are working with medicines management and pharmacy regarding communications in the Clinical Commissioning Group (CCG), including newsletters and practice information. We are also working with the Trust communications team to get the information about the change out in a timely manner through screensavers, posters, email and newsletters.
In addition, the project lead attends AHP and senior nursing forums to disseminate information, and a briefing has been prepared for the Trust board. Our quality improvement project team is also involved.