Total Communication Services CIC is a Community Interest Company aiming to promotecommunication, choice, personalisation, and the emotional wellbeing of people withlearning disabilities. We would like to tell you about our trip to London to campaign forcommunication rights with Bury People First, a self-advocacy group from Bury, and ElysiumGateway, a recovery centre in Widnes.
Alison Emma and Rhiannon from Total Communication Services CIC travelled to London with self-advocates and staff from Bury People First to campaign for communication rights for people with learning disabilities.
We arrived on Sunday 26th June 2022 and started our trip with some sight seeing on an open-top bus, followed by some food and drinks, and a good night’s sleep before our trip to Parliament.
Monday 27th June, we had a big breakfast and set off for Parliament. We met up with staff and self-advocates from Elysium Gateway Recovery Centre, and Speech and Language Therapist Neil Thompson from Commtap, who were joining us to campaign for communication. When we arrived, we were taken on a tour of Parliament.
We expected to be trying to stop MPs walking through the lobby to talk to them about our project, the Communication Rights Charter, so we were surprised to be invited to a Committee Room in the building by James Daly, our local MP (Bury North), and to be told that people had appointments booked to come to see us.
The people who came to see us in the Committee Room were:
Robert Halfon: Minister of State for the Department of Education; MP for Harlow
Jeremy Hunt: Former Secretary of State for Health and Social Care; MP for South West Surrey Jake Berry: Minister of State for the Ministry of Housing, Communities, and Local Government; MP for Rossendale David Johnston: Parliamentary Private Secretary at the Department for Education; MP for Wantage Joy Morrissey: Parliamentary Private Secretary to the Prime Minister; MP for Beaconsfield.
We took the poster that we made for the Communication Rights Charter. This is based on Scope Australia’s Communication Bill of Rights. We developed this poster because the self-advocates felt as though the Communication Bill of Rights would work well as a communication policy document, but they didn’t think it was accessible for people with learning disabilities. Self-advocates with learning disabilities were consulted about all of the images in the poster below, and Angie, our graphic artist, made these bespoke images based off the feedback from the self-advocates, to ensure that the images were accessible and meaningful.
We used the opportunity to speak to those who came to visit us about acknowledging the right to communicate as a human right. We expressed that recognising different ways of communicating should be respected and embedded into our culture. We suggested that training in communication should be delivered consistently to people who are responsible for others, including the emergency services, and that quality improvement in services and schools should be monitored and assessed by people with learning disabilities and autism, as usually, they are the ones who have the lived experience of their communication rights not being met.
One of the self-advocates, Rebecca, expressed her passion for consistent access to communication aids for people who need them, and another self-advocate, Matthew, talked about sign-supported speech and how this was important to him.
As our colleagues from Elysium Gateway Recovery Centre also joined us, this was a prime opportunity to talk about the amount of people with autism and learning disabilities who are detained in hospital unnecessarily, a subject of particular interest to Jeremy Hunt, who was actually on his way to talk about this subject at Parliament on the day.
We feel confident that we made an impact in Parliament by speaking up for the right to communicate, and it made us feel proud (and a little emotional!) to hear James Daly say, “you have really started something here today”.
Rebecca ensured that Joy Morrissey took some of our posters with her to Number 10 so that our Prime Minister could see our work and our ambitions for the project.
James Daly took the rest of the posters and ensured that he would pass them along to other MPs to spread the word further.
It would be really helpful if you could share our social media posts so that we can reach even more people, and to sign and share our petition to get communication seen as a human right!
Link to Petition: https://chng.it/KbVqzBw2rp
Facebook:
Total Communication Services CIC
Bury People First
Twitter:
@TotalCommOrg
@BuryPeopleFirst
Updated: Jun 11, 2022
Over lockdown, Total Communication Services CIC met with Bury People First for weekly Signalong sessions.
The self-advocates from Bury People First were extremely interested in people’s right to communicate and were keen to campaign. As a result, the self-advocates were introduced to Scope Australia’s Communication Bill of Rights and asked if they thought it would be a useful tool for a communication policy.
The group liked the idea of the Bill of Rights but didn’t think it was accessible for people with learning disabilities.
This led to a project in adapting the Bill of Rights based on the self-advocates’ feedback to make it accessible for people with learning disabilities.
The group were consulted about the wording of each Right, and what the pictures should look like to represent each Right. Angie, our graphic artist, set to work on developing a set of bespoke images for the adapted Bill of Rights. We also made a film starring the self-advocates, demonstrating each Right. This led to our CommuniCake Conference on 1st October 2021, where we raised awareness of communication and offered a sneak preview of the Bill of Rights work we had done.
More information on the development of the adapted Bill of Rights and the CommuniCake Conference can be found in our downloadable 2020-2021 Social Impact Report (pages 13-16), available here:
At the conference, we met some local MPs who were keen to support us to spread the word about communication and the Bill of Rights. This has led to us securing a date to lobby parliament about the right to communicate, which is where our work on the Bill of Rights will be officially launched on 27th June 2022. We are all very excited!
In the coming weeks leading up to 27th June, we will be sharing information about each Right on our social media pages (Total Communication Services CIC and Bury People First). We would be grateful if these posts could be shared far and wide to help us raise as much awareness about people’s right to communicate as possible!
The self-advocates will also be very happy to deliver training about the Bill of Rights and people’s right to communicate where it is of interest.
Please check out our social media pages for more updates:
Total Communication:
Facebook: Total Communication Services CIC
Twitter: @TotalCommOrg
Instagram: tc_org
Bury People First:
Facebook: Bury People First
Twitter: @BuryPeopleFirst
Evidence-based practice (EBP) is defined as practice integrating the best available evidence, clinical expertise, and the values and wishes of individuals being supported (Straus & Sackett, 2005). Due to the complexity of speech and language therapy intervention, the Royal College of Speech and Language Therapists (RCSLT) have advised a model that incorporates the triad of EBP, with advice to place focus on the individuals being supported. They suggest that ethical care is the main focus, combined with individualised and accessible evidence, expert judgement, shared decision-making, and client-clinician rapport building. They recommend that this model should be applied to care provision at an individual and service level (RCSLT, 2022). This blog will focus on EBP within speech and language therapy services for adults with learning disabilities with regards to communication.
Following the integration of adults with learning disabilities into society from long-stay institutions, Speech and Language Therapists working with this heterogenous group required more in-depth guidance to support them than what was provided through general clinical guidelines. Speech and language therapy for adults with learning disabilities was a relatively new specialism, with extremely limited published evidence. Like-minded Speech and Language Therapists within the field led the way to creating additional values-based documentation to support general clinical guidelines supported by the Social Model of Disability, by asking respected Speech and Language Therapists in the field to provide information around effective approaches they had used, and reaching consensus using the Delphi technique based on this to inform good practice (RCSLT, 2003).
A consensus approach continued to be used to support guidance for Speech and Language Therapists working with adults with learning disabilities, in developing the ‘tiered model’, showing how speech and language therapy involvement can be effective in the community, at a mainstream level, in specialist learning disability services, and in specialist direct interventions, with examples of good practice to illustrate this (RCSLT, 2010). A new position paper of guidance by consensus for Speech and Language Therapists working with adults with learning disabilities is being developed currently. Another useful document was commissioned by MENCAP, detailing which approaches work for people with learning disabilities and complex communication needs, informed by evidence in the literature and consensus reached between Speech and Language Therapists and the carers of adults with learning disabilities (Goldbart & Caton, 2010). Clinical excellence networks are also used by Speech and Language Therapists working with adults with learning disabilities for regular opportunities to share ideas, and Speech and Language Therapy Assistants as well as Support Workers are expected to engage with EBP, and to evidence the effectiveness of their own support provision, which in turn, can inform future evidence (RCSLT, 2009). Regarding planning for future research, multidisciplinary teams, including adults with learning disabilities and carers, are consulted about priorities for new research (RCSLT, 2021).
Speech and Language Therapists were asked why they use interventions with people with profound and multiple learning disabilities. The interventions included were Intensive Interaction, Objects of Reference, multisensory approaches, communication passports, symbolic interventions, training, environmental support, switches, and creative arts. Only use of Intensive Interaction and training was attributed to published research evidence, on rare occasions. More approaches were used due to clinical expertise, although this was still rarely reported as a reason. Clinical expertise may be unacknowledged, and therefore underreported, by those who have extensive experience working in the field, where use of this knowledge has become tacit. The values and wishes of individuals being supported are pertinent in clinical decision-making, and with people with more severe-profound learning disabilities, practitioners are expected to follow the evidence in how to appropriately and reliably obtain the views of these individuals. Having said this, the majority of reports from Speech and Language Therapists attributed use of approaches to the meeting the needs of the individuals they were supporting. The use of some approaches was attributed to using what resources were available to them at the time (Goldbart, Chadwick & Buell, 2014). Empirical evidence, though limited, is available for some of the approaches explored that were used without attribution to published research evidence, highlighting a mismatch of available evidence and the use of it in practice. Conversely, some approaches were reportedly used frequently by Speech and Language Therapists, that do not have as much empirical evidence to support their use (Goldbart, Chadwick & Buell, 2014).
Most of the evidence for speech and language therapy approaches for people with learning disabilities are grade C, based mostly on expert opinion and clinical experience (Goldbart, Chadwick & Buell, 2014). Adults with learning disabilities are a heterogenous group with high variability, therefore it is difficult to conduct ‘high level’ studies such as randomised controlled trials. Individualisation is essential for effective care planning for this group, including work with the individual, those around them, and the environment. A systematic review was carried out to look into the effectiveness of speech and language therapy for adults with learning disabilities and communication difficulties. Only ten papers could be included in the review due to exclusion of low quality evidence. Only one paper looked at indirect intervention, which is concerning, considering the focus on inclusive communication in the literature in recent years (e.g., Money & Thurman, 2002; RCSLT, 2013; Money et al, 2016; Marsay, 2017) (Wood & Standen, 2021). Evidence with this population is low quality due to lack of inclusion/exclusion criteria, limited descriptions of interventions (creating difficulty regarding replication), limited descriptions of the participants’ presentation regarding communication (particularly important given the heterogeneity of the population), insufficient attention to potential biases, lack of established outcome measures, and small sample sizes, making the available evidence difficult to generalise (Wood & Standen, 2021). It is acknowledged that difficulties obtaining capacity and consent with adults with learning disabilities can hinder research recruitment processes (Oliver et al, 2003).
As speech and language therapy interventions for adults with learning disabilities are complex and multifaceted, it is important to integrate empirical evidence of specific interventions with more general guidance on working with adults with learning disabilities in their environment (Goldbart, Chadwick & Buell, 2014). Additionally, there are lots of single case designs in research with people with learning disabilities. These are useful for clinical practice as they show how interventions can be individualised to meet the needs of the individual being supported, although currently, the quantity of high quality single case designs is too limited to be able to pool them to guide EBP (Wood & Standen, 2021).
In light of this, it is reasonable to suggest that Speech and Language Therapists in learning disability services do not always use EBP guided by published research due to a lack of it. It is also important to consider that Speech and Language Therapists may not be supported to have the time or access to the resources required to keep up to date with the latest evidence (Goldbart, Chadwick & Buell, 2014). Many do not believe that the complex interventions required by those known to speech and language therapy services can be researched in the same way as other areas of medicine and healthcare. EBP models based on a medical model of practice with rigid criteria to eliminate as many variables as possible makes it difficult to apply and generalise evidence to real individuals with complex and multifaceted needs (Greenhalgh, Howick & Maskrey, 2014). It is argued that requirements for higher level empirical research diminishes the tacit skill set of professionals, that is central to working with people with learning disabilities, due to its lack of measurability (Phelvin, 2012). This could be the reason behind Speech and Language Therapists in learning disability services prioritising the individual needs of the people that they support over published research evidence.
Exclusion of published research from clinical decision making can create issues in terms of funding. With the effects of austerity posing a persistent threat to budgets in health and social care, there is an ever-pressing need for services to prove that what they do works. Commissioning and service planning is revolved around evidence-based effective practice (Enderby et al, 2009). For Speech and Language Therapists in learning disability services, with little access to high quality evidence, it is significant that meaningful outcome measures are carefully selected, and work towards these is well documented, in an effort to supplement the limited published evidence base with real life examples of good practice, and how this has increased the quality of life of the individuals supported by the service.
To conclude, speech and language therapy practice in learning disability services is largely informed by clinical expertise collected by group consensus in the absence of a rich evidence base, and by the values and wishes of the individuals being supported by them. The published evidence base is growing, however, there are concerns around producing higher level research in this field, where randomised controlled trials are considered the ‘gold standard’, with a client group presenting with such a wide range of variables. It may be that research in this area lends itself more to qualitative methodology and single case or case series designs, but these must follow specified criteria to ensure that they are of high quality. This research can then be unified to create a comprehensive view of how interventions can fulfil the needs of adults with learning disabilities, and how they can be individualised to suit the particular needs of prospective users of them. In the absence of sufficient published evidence, Speech and Language Therapists should endeavour to establish meaningful outcome measures to not only meet goals which are important to the individuals being supported, but to enable practitioners to show commissioners that what they do works. Consequently, this may support further research into these approaches, allowing the evidence base to grow and inform good practice in other services.
References
Enderby, P., Pickstone, C., John, A., Fryer, K., Cantrell, A. & Papaioannou, D. (2009). Resource Manual for Commissioning and Planning Services for SLCN. London: RCSLT.
Goldbart, J. & Caton, S. (2010). Communication and People with the Most Complex Needs: What Works and Why This Is Essential. Manchester: MENCAP.
Goldbart, J., Chadwick, D. & Buell, S. (2014). Speech and Language Therapists’ Approaches to Communication Intervention with Children and Adults with Profound and Multiple Learning Disability. International Journal of Language and Communication Disorders, 49(6). 687-701.
Greenhalgh, T., Howick, J. & Maskrey, N. (2014). Evidence Based Medicine: A Movement in Crisis? BMJ, 348. g3725.
Marsay, S. (2017). Accessible Information Standard. Leeds: NHS.
Money, D. & Thurman S. (2002). Towards a Model of Inclusive Communication. Speech and Language Therapy in Practice, Autumn. 4-6.
Money, D., Hartley, K., McAnespie, L., Crocker, A., Mander, C., Elliot, A., Burnett, C., Hazel, G., Bayliss, R., Beazley, S. & Tucker, S. (2016). Inclusive Communication and the Role of Speech and Language Therapy: Royal College of Speech and Language Therapists Position Paper. London: RCSLT.
Oliver, P.C., Piachaud, J., Done, D.J., Regan, A., Cooray, S.E. & Tyrer, P.J. (2003). Difficulties Developing Evidence-Based Approaches in Learning Disabilities. Evidence-Based Mental Health, 6(2). 37-39.
Phelvin, A. (2012). Getting the Message: Intuition and Reflexivity in Professional Interpretations of Non-Verbal Behaviours in People with Profound Learning Disabilities. British Journal of Learning Disabilities, 41(1). 31-37.
RCSLT. (2003). Position Paper: Speech and Language Therapy Provision for Adults with Learning Disabilities. London: RCSLT.
RCSLT. (2009). RCSLT Policy Statement: Education and Training for Assistants/Support Workers. London: RCSLT.
RCSLT. (2010). Adults with Learning Disabilities (ALD): Position Paper. London: RCSLT.
RCSLT. (2013). Five Good Communication Standards. London: RCSLT.
RCSLT. (2021). Learning Disabilities Research Priority Setting Partnership Report. London: RCSLT.
RCSLT. (2022). Evidence-Based Practice: Model of Evidence-Based Practice. Retrieved 2nd January 2022 from https://www.rcslt.org/members/research/evidence-based-practice/
Straus, S.E. & Sackett, D.L. (2005). Evidence-Based Medicine: How to Practice and Teach Evidence-Based Medicine. Third Edition. Edinburgh: Elsevier Churchill Livingstone.
Wood, S. & Standen, P. (2021). Is Speech and Language Therapy Effective at Improving the Communication of Adults with Intellectual Disabilities? A Systematic Review. International Journal of Language and Communication Disorders, 56(2). 435-450.
by Emma Beckett
