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
Introducing Siobhan
We would like to welcome Siobhan Quinn to our team. I have had the privilege of working alongside Siobhan for the last 5 years and I’m delighted she is joining us. Siobhan and I will be offering a number of joint initiatives including autism diagnostic assessments (ADOS) and below Siobhan talks about a new course written for support staff. Please contact us at info@totalcommunicaiton.org for details of the course or assessments.
Alison
Over to Siobhan…
Supporting People to Talk about Feelings
I qualified as a counselling psychologist in 2007. Since then I’ve worked in a variety of settings including community settings, psychiatric hospitals and prisons. Regardless of the setting and population I’ve worked with, supporting people to talk about their feelings can cause a lot of anxiety in staff.
It is becoming more common for us to talk about our feelings. We often ask people how they are feeling. However, we usually get (and probably expect) a superficial answer of “okay” or “not bad, thanks, how are you?”
What if they’re not okay? What if they start to cry and tell us that they can’t cope? What if they become agitated and start to pace around the room? Or if they just completely shut down?
Working in mental health and social care, this can be a regular part of our job. However, often people don’t feel confident and equipped to manage it. We likely feel a burden or responsibility that we need to do something to make them feel better. But what??
Don’t panic! I want you to think of a situation in which someone was caring and compassionate to you when you were upset.
Think of what it is that they did and what helped to make you feel better.
You will probably find that they did most of the following.
- Listen to them. Sounds simple but it’s actually not. To just listen without interrupting, leading the conversation or telling the person that it’s going to be okay. Just listen.
- Help them to understand what they’re feeling. “you seem really sad”, “you seem really frustrated”. Often we are oblivious about what we are feeling until we reflect on it after. This can be even more difficult for people with learning difficulties or who have an autism spectrum disorder.
- Validate! This is so important. This is not about validating the facts of what they are saying. It’s about validating that it’s okay and understandable that they feel this way. When they start crying, we often get an urge to say “there, there” and hope they will stop crying. Try to do the opposite. Tell them crying is good and it’s ok and sit with them while they cry.
- Remind them that you are there and will help them through this. They are not on their own with this. Even if they are too upset to speak, just being in the room with them can be very containing for them.
- If you think that they might be too overwhelmed by the emotion (e.g. becoming panicked or aggressive), help them to regulate. Tell them that you are going to support them to regulate and talk them through some coping skills. This could be anything from holding ice to listening to music to have a cup of tea together. Try to encourage them to slow their breathing. Reassure them that it will be okay and you’re there to guide them through this.
You do not need to do all of this. Any one of these points is probably enough. Enough for the person to feel cared for and safe. Enough for them to not feel confused and alone with how they are feeling.
Alison Matthews and I facilitate a training course on ‘Supporting People to Talk about Their Feelings’ which is aimed at support workers, carers and families of people with learning disabilities and/or autism. This is a two hour course which goes into more detail on the above points and provides a number of strategies and resources to make talking about feelings more accessible.
Siobhan Quinn
Counselling Psychologist
