The more the merrier: more speechies joining dementia care please!

 

When I posted the wonderful blog written by the SLT, Georgia Bowker-Brady, I was overwhelmed by the response. The twitter discussion on the topic of speech and language therapy for dementia was really valuable. In response a wonderful colleague, a Neuro-psychologist and researcher here at UCL; Dr Aida Suárez-González got in touch with a really inspiring blog she wanted me to share here. A call to arms to all speech and language therapists. Aida is a massive advocate for speech and language therapy and an all round wonderful human being. Thank you for the support Aida- we really appreciate it!

The first SLTs in my life were my friends from the School of Speech and Language at the Universidad Pontificia of Salamanca. I met them in 2003 while studying my masters after completing my undergraduate degree. I spent a lot of time surrounded by SLTs over the next couple of years. I learned about their role in managing voice conditions, dysphagia, dysarthria, administering orofacial myofunctional therapy, supporting kids with learning disabilities and  deafness etcetera. Clinical discussions over dinner, the challenges in teaching and training, the lack of appreciation of SLT in the health care system and related topics filled many conversations over drinks, dinners and Sunday afternoon gatherings. I remember reflecting on how practical their discipline was. I found it very varied and hands-on and was intrigued to see that even recently graduated SLTs were already able to use many techniques, solve many problems and be very useful.

 

Then I qualified and moved to pretty Seville to join the Cognitive Disorders Unit of the Neurology Department at Virgen del Rocio University Hospital as a junior neuropsychologist. I must say that my 9 years there have never been exceeded by any other experience in any other place in which I have worked since. Apart from the exceptionally high clinical services delivered and my overwhelmingly experienced colleagues in the department, I had the opportunity to be completely immersed in a clinical culture that celebrated excellence, mentorship, integrity, knowledge and most importantly: collaboration. For instance in the 90s the team on the Stroke Unit had pioneered the carotid artery stenting in Spain. They did this through a bold collaboration between neurologists, radiologists and nurses. The neurologists in the Cognitive Disorders Unit (my Unit!) really appreciated the role of the neuropsychologist, in spite of being highly knowledgeable and well versed in cognition and neuropsychology themselves (or maybe because of that!). Other allied professionals were also very respected and everybody knew everybody in the hospital, after years of inter-professional collegiality.

 

I was however very surprised when I learned that the SLTs in the hospital refused to see our patients with PPA, either because they did not accept referrals for people with dementia (they were prioritizing people with chronic conditions such as stroke related aphasia) or because those who did accept referrals, did not know how to handle PPA. The neurologists had been trying to refer patients with PPA for years and referrals always bounced back to us. I then learned that in other places the problem was the other way around: there were SLTs eager to help people living with dementia but referrals never arrived, or they arrived only when the person was in the severe stages of the disease, or presenting with swallowing difficulties. Five years ago, I moved to the UK and found that the situation was similar here. The problem in both countries is not only that the role of SLT is not properly understood by many people. The crucial problem is the historically nihilistic and reductionist approach to dementia across our society, which considers that people with degenerative cognitive conditions do not have the same rights as others, and do not deserve the same level of rehabilitation and positive support and investment as people with chronic conditions such as stroke related aphasia. In my mind this is discrimination. it is unfair, unethical and it is a violation of human rights.

 

50 million people are currently living with dementia worldwide. This figure will increase to 82 million in 2030 (11 years from now). And to 115 in 2050 (31 years from now). Some pharmaceutical companies have now simply discontinued the fight to find a cure. Altogether this depicts one of the most challenging global health crises of our time. It is estimated that by 2050 there will be no person in the developed world untouched by dementia, either because they have dementia themselves or have a close relative or friend living with dementia. This is why we need as many hands on deck to join in the work we are doing in the area of dementia care. SLTs have a crucial role to play here. In my 14 years of experience working with people with dementia, I have seen many families shattered by two of the main consequences of the disease: the neuropsychiatric symptoms and the communication breakdown. And SLTs can actually help with the second issue. So, this is a call for action. For SLTs to take a prominent role at the front-line in this challenge, to join forces with the rest of the professionals up here and help to create a world where we can live together with the symptoms of dementia and still be the owners of our own lives.

 

A life working in dementia is a life well spent, a huge legacy for future generations. And you will probably meet very inspiring colleagues, friends, families and patients on your way. I hope more of you will join us on this journey.

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Is SLT for people with dementia a lost cause? Absolutely NOT.

Over the next few weeks this blog will be giving voice to speech and language therapists other than myself, who have things to say on dementia. Georgia Bowker-Brady is a speech and language therapist, working on the Better Conversations with PPA (BCPPA) project as a local collaborator. Georgia has written a really insightful blog into the everyday challenges that clinicians face when working in this area, but highlights why it is really worth it:

Working as a speech and language therapist with people with dementia is a role that I find highly rewarding. Yet when I tell others about my job “Aren’t they a lost cause?”-type sentiments (framed more politely) often ensue. Of course like any role it can have its challenges but I also think there are many positives.

 

So I thought I’d have a go at briefly outlining my take on some of the highlights and difficulties when working with people with dementia as a speech and language therapist:

 

Speech and language therapists aren’t exactly rolling in randomised controlled trials right now, most likely due to several factors including the relative youth of our profession, the lack of homogeneity of client groups and the complexity of “communication” as a process. When working in dementia care this paucity of evidence-base can feel even more exaggerated.

The evidence base is, however, slowly growing and we do have an increasing number of studies that show that intervention can be effective even in moderate and severe stages of dementia (Swan et al, 2018). Two evidence-based principles that I often find helpful to use in conjunction with other approaches are spaced retrieval and errorless learning (Jang et al, 2015; Jokel & Anderson, 2012; Oren et al, 2014;). I find them pertinent when, for example, introducing communication aids, or for the re-learning/retention of single words.

I recently got involved with Anna’s Better Conversations with Primary Progressive Aphasia (BCPPA) pilot study and thoroughly enjoyed carrying out the therapy with one of my patients and her conversation partner. They had positive outcomes and I found it a valuable experience both in terms of being involved in the study and in further considering the role of videoing in conversation partner training. Although there’s still a way to go, dementia research is finally moving in the right direction on the national and international agenda. Even if you don’t fancy heading up a research project, I would really encourage you to get involved with chances to contribute to research that’s happening if you can. For me, this is another plus to the job.

The progressive nature of dementia presents certain considerations for goal-planning and intervention, and whilst some patients may be able to benefit from impairment-based therapies, we’re never quite sure how long the benefits might be sustained. Additionally, the cognitive changes experienced by someone with dementia can affect the way they engage in speech and language therapy. During our clinical training, cognition and language were often neatly separated out, but of course the reality is that they are inherently entwined. For people with dementia difficulties with memory, attention, executive function etc can impact on their ability to engage in therapy or to take on board compensatory strategies. There can also be challenges associated with the person possibly lacking insight into their difficulties.

The flipside is, that to work around these obstacles we take a more pragmatic and holistic way. Perhaps our lack of evidence base gives us more licence for creativity to do this, and the motivation to be truly person-centred. In my experience it’s vital to work closely with families, carers and the wider multi-disciplinary team which again contributes to increasing participation and a supportive communicative environment. Whilst gains from impairment-based work may not be long-term, I’ve had feedback from patients that actually just realising they can improve at something with a diagnosis of dementia is a powerful discovery.

As we’re all keenly aware, service provision across the country varies enormously. Due to the current pressures, teams have to ring-fence their remit carefully and at times it’s people with dementia that lose out. For example, some services have criteria which will only include people with dementia for dysphagia but not for communication. I’m not sure why services that support adults with acquired communication difficulties single out dementia as a diagnosis for exclusion. The patients that slip through the net are not getting the support they need. This can feel frustrating, disheartening and unfair. I’m sure we’re all doing our best to advocate for these patients and highlight our concerns to the relevant personnel.

My final point, but one of the most important about why I love my job is that through my work I have met some fascinating, kind and wonderful patients who have a tapestry of stories to share. They have often offered life advice and pearls of wisdom that people would pay good money for! One couple recently told me the secret to their 50 year marriage – “Always lift the other person up. Be the one that believes in them and tell them you love them every day.”

 

So those are my thoughts – in actual fact, I think many of those challenges would be similar across several adult acquired patient groups. All in all for me, I am certain the highlights far outweigh the challenges.

 

References

  1. Jang, J. S., Lee, J. S., & Yoo, D. H. (2015). Effects of spaced retrieval training with errorless learning in the rehabilitation of patients with dementia. Journal of physical therapy science, 27(9), 2735–2738. doi:10.1589/jpts.27.2735
  2. Jokel, R. & Anderson, N.D. (2012) Quest for the best: effects of errorless and active encoding on word re-learning in semantic dementia. Neuropsychological Rehabilitation, 22(2): 187-214.
  3. Oren, S., Willerton, C., & Small, J. (2014) The effects of spaced retrieval training on semantic memory in Alzheimer’s Disease. Journal of Speech-Language and Hearing Research, 57(1):247-70.
  4. Swan, K., Hopper, M., Wenke, R., Jackson, C., Till, T. & Conway, E. (2018). Speech-Language Pathologist Interventions for Communication in Moderate-Severe Dementia: A Systematic Review. American Journal of Speech-Language Pathology, 19:1-17.

 

Blogging the evidence: Summarising my systematic review of functional communication interventions for PPA

I have just published my most recent article from my PhD thesis. So, I thought it best to write a brief blog- a taster if you like – providing an overview of the article itself. The article describes the work I did on a systematic review of functional communication interventions:

Volkmer, A., Spector, A., Meitanis, V., Warren, J. D., & Beeke, S. (2019). Effects of functional communication interventions for people with primary progressive aphasia and their caregivers: a systematic review. Aging & mental health, 1-13.

People with Primary Progressive Aphasia (a language led dementia) experience a variety of difficulties with language such as difficulties in understanding word meanings, difficulties thinking of words, difficulties finding the sounds to articulate the words and difficulties in understanding and using sentences. Yet there is relatively little research on management of these speech and language symptoms. Of the literature available, the majority focuses on impairment based approaches such as word relearning interventions. Yet speech and language therapists working in clinical settings across the UK report that they prioritise more functional communication interventions when working with people with PPA. Given this lack of focus on functional communication interventions in the research literature to date this study sought to answer the following questions:

  1. What are the current functional communication interventions for people with PPA and their caregivers?
  2. What is the effectiveness of these interventions?
  3. What are the key intervention components?

We conducted a systematic search of 8 databases, the grey literature and trials databases from 1998 to 2018 to identify all study designs containing empirical data on functional communication focused interventions for people with PPA and their caregivers. Data was then extracted using the ITAX adaptation (O’Rourke et al, 2018). The ITAX adaptation is based on an intervention taxonomy that allows for comparison of standard protocol items that should be reported in intervention trials.  This allowed for comparison of delivery characteristics such as mode, method of contact, materials, location, duration and scripting components. Study outcomes were also compared across the studies

We identified 19 studies, comprising 11 case studies, one case series, one pilot intervention trial, five intervention trials (no control) and one controlled intervention trial. This represents an increase in the number of functional communication interventions studies when compared to previous reviews.

Key findings from the review highlight that including communication partners in the intervention and focusing on skill building techniques – developing the person’s strengths, may be particularly useful methods of supporting maximal generalisation of anything learned in therapy. It is more difficulties to identify any additional conclusions as there was such variability in terms of components such as delivery location and dosage, and these may be much more dependent on the individual’s needs.

Across all 19 studies, 42 different outcome measures were used. Only two studies used the same measure, designed by the authors (the same authors of both studies). This meant that study outcomes were incomparable. Of these outcomes, 19 provided statistical data on significance – 17 of which demonstrated a significant improvement across 8 different studies. The key implication is the need for a set of core outcome measures, used across the research field to allow for cross-study comparison.

Conclusions:

Building on existing strategies and practising these with a communication partner have been identified as key components of functional communication focused interventions for people with PPA and their caregivers. We need more research, using more robust research methods and common outcome measures (such as those that focus on self-efficacy and quality of life) in order to fully understand the effectiveness of functional communication focused interventions.

 

To read the full article please go to: https://www.tandfonline.com/doi/full/10.1080/13607863.2019.1617246

Doing research with people with dementia: What actually happens in the interview?

 

Talking to people with dementia can be hard work. As a health professional I have often used numerous creative strategies to do this, borrowed from my knowledge of working with people with aphasia post stroke, or cognitive communication difficulties post brain injury. These strategies can include modifying the environment (quiet is generally better- therefore off the ward, no TV, no visual distractions either), considering the time of day (depends on the person when they are at their best), modifying my communication (using pictures can help or hinder, modifying language to be simpler is not always effective) and considering carefully what else might help (do friends/carers/family help or not). This can really very effective ways of interacting.

When doing research with people with dementia communication strategies can also support participation. I have been running focus groups with people with Primary Progressive Aphasia, and more recently people with Alzheimer’s dementia. The strategies that we needed to employ to support people to participate were overlapping but different. Some of the commonalities included environmental factors, such as the way the chairs were set, the number of participants we invited, the pace of the activities. Some strategies needed to be specific to the individuals involved. One person I worked with used gesture to convey meaning, and I needed to use more clarification to ensure I had interpreted her correctly. Another person I worked with needed frequent re-orientation to the task and where his partner was, whilst also participating in some discussion.

That said, it can be very easy to use more leading or biased language when one tries to break things down and make them more accessible for the listener. We are supposed to use the least bias possible, and present information in a balanced way. Unless we carefully consider the way we use pitch, tone, and gesture alongside vocabulary we can easily biased people without even realising it. I was recently speaking with another SLT, Sarah Griffiths who has recently blogged on this topic for the dementia researcher website. Sarah is a former senior lecturer at Marjon University and currently a research fellow at Plymouth University. We were discussing how we do research with people with dementia, how we engage them in a conversation or interview, but don’t bias them and whether this is even possible. The more I think about this, the more I am not sure we can’t avoid some bias. But perhaps by being mindful of context and language, by using multiple choices and acknowledging bias this can help.

Sarah put me onto a great blog by Jemima Dooley, she cites the work done by a group of researchers with dementia called the Forget-Me-Nots who are coming up with tips and hints on how to support people with dementia to tell their stories in a research context. Jemima discusses the idea of using photos, taken by the research participants, which then support discussion points in interviews. I have used this approach, successfully in therapy, and PPI work. I have yet to see it work in research activities specifically. I am planning to use it in some work I doing shortly. But again I am not sure that this is without bias, and interpretation.

I have though quite a bit about this, and I have actually been pondering whether, as long as we use all these strategies to maximise participation, should we actually be focusing more on how we are interpreting the data? Do we need to be mindful of getting assurance from the people themselves, their families or other people with dementia, that we are interpreting the data correctly? Would this support our methodology too? Can we do this with people with dementia?

Food for thought!

 

Guest SLT blog: ‘Chatting Matters’ – Positive collaboration for communication difficulties in Dementia

Over the last few years I have been interacting more and more with speech and language therapists, working in the field of dementia, who are providing innovative services to people with dementia. Caroline and her colleagues told me all about the wonderful Chatting Matters group they set up, and I asked them to write about it for me. The following provides a really inspiring account of the work they did to set it up.

Authors: Caroline De Lamo White and Rachel McMurray are speech and language therapists in Leicester Partnerships NHS Trust, and Nicola Lawtie was the speech and language therapy lecturer at De Montfort University.

Introduction:

There is currently variable provision of communication intervention for people with dementia (PWD) in the UK (Volkmer et al, 2018). Many clinicians report that the greatest proportion of PWD being seen are at the later stages of the disease for assessment and management of dysphagia.  Progressive loss of language can be frustrating and traumatic for the person with dementia and affects their identity and relationships (Bryden, 2005). Communication difficulty has also been described as one of the most frequent and hardest to cope with experiences for family carers (Braun et al, 2010) and can negatively impact carers’ emotional and physical health (Gallagher-Thompson et al, 2012).

To address this area of unmet need in our service we decided to offer a community-based intervention to focus on communication breakdown in Dementia to support both the PWD and their main carer. There was a risk of being overwhelmed by a large number of referrals so we decided to undertake a small scale pilot study using the ‘plan, do, study act’ cycle advocated by the NHS Improvement (NHSI). We came up with several ideas but decided on running a communication support group for people with dementia and their carers. ‘Chatting Matters’ was born.

Aims of Chatting Matters:

  • To explore the value and scope of community-based Speech and Language Therapists (SLT) working with clients with communication difficulties secondary to dementia to inform future possible service developments for PWD.
  • To provide carers with practical strategies and tips to improve communication at home; thereby reducing carer strain and frustration.
  • To increase people with dementia’s sense of well-being and facilitate increased positive engagement in social interaction.
  • To work collaboratively with De Montfort University SLT course to develop innovative placement models to support the students learning and support the running of the groups.

 

We established new links with the local community mental health team who were able to provide a manageable quantity of referrals within an agreed time frame. This enabled us to undertake the study alongside existing caseloads without being overwhelmed. Referral criteria was kept fairly broad for the initial group however referrers were asked to consider couples for whom communication was a significant challenge at home, and who would be willing to attend a group.  Referrals were triaged by two qualified SLTs in the clients own home. One therapist explored the carer’s perceptions, insights and experience of their partner’s communication difficulties. The other clinician spent time informally assessing the communication abilities of the person with dementia in order to ascertain the severity and nature of their impairment.  Clients presented with a variety of conditions including early onset Alzheimer’s disease, vascular dementia, dementia with Lewy bodies and fronto-temporal dementia and had a varying levels of communication impairment within the mild to moderate range.

 

 

Format:

We ran a six week conversation group for the clients, alongside a support group for their carers.  There were eight participants in each group.  We worked in collaboration with undergraduate placement students from De Montfort University as a way to fully resource and support the running of the two groups. This service model would have been very difficult to run with just the SLT’s and this innovative placement opportunity provided a valuable and insightful learning experience for the students. The students were supported to run the client group and encouraged to think about a variety of multi-sensory activities which would stimulate memory, communication and promote positive person-centred interactions in order to enhance well-being. Research suggests positive changes to well-being and communication are achieved through cognitive stimulation as well as improvements in cognition therefore therapy tasks included elements of reminiscence therapy, total communication and aspects of cognitive stimulation therapy (Spector et al, 2013).

The SLT’s concurrently ran the carers group providing knowledge, strategies, advice and support around interaction and communication with PWD. There was also an opportunity for carers to share experiences together.

 Outcomes:

A variety of assessment tools were used to capture outcomes but personal narrative was found to be the most powerful and specific. Quantitative measures were found to be less sensitive to change. Carers were reluctant to “give it a number” and whilst the focus of many SLT tools is to measure language skills, for the clients the aim was to improve well-being and engagement. The comments given by clients, carers and students are captured in the table below and categorised by theme.

Participants

 

 Outcomes Comments
Clients with dementia Improved sense of well-being

 

 

Increased engagement in activities of daily living

 

 

 

Reduced sense of isolation

“Oh I have enjoyed it, yes!”

D- person with dementia

 

“The group lifted my spirits. I used to just watch TV and now I get dressed and go out”

I – person with dementia

 

“I felt abandoned after diagnosis. I don’t feel so alone. I’ve really enjoyed [the conversation group].”

V – person with dementia

 

 

 

Carers Increased level of insight into the importance of well-being in self and others.

 

 

Observing a tangible increase in levels of engagement in a supportive environment.

 

 

 

 

Increased carer resilience

 

 

Improved knowledge, understanding and acceptance of the condition and its affects.

 

 

 

 

 

Change of approach and increased insight into the applicability of communication strategies.

 

“[The group] made me realise that well-being applies to us all. It made me think about how to

bring the best out in K ”

 

“S looked forward to the group each week and I found that when he was in the session he really came ‘out of his shell’; initiating conversation with others and making jokes.”

 

“I’m coping much better than I did [before the group]”

 

“[The group] has helped me accept [my husband’s diagnosis of dementia]. I was feeling very anxious at times before the group. This has reduced.”

 

 

 

“ I have learnt the importance of patience with communication”

 

“Not everything has been relevant to my specific circumstances but there are bits to take away.”

Placement Students Developing a therapeutic relationship

 

Continuity of care

 

Witnessing positive change within a short time frame

 

Experience of intervention planning for people with dementia

 

Running a group

 

Working independently

 

Developing workforce

“For much of the rest of my adult placement I was doing assessments/reviews, it was really good to see clients over 6 weeks, build relationships and see that the clients were both benefitting and enjoying it”

 

“I learned about Dementia and its impact and could see that the couples really needed this”

 

“I knew that it would not have been possible to resource this group without students which made us feel we were really making a difference”

 

“I enjoyed the independence of planning and running the groups with my peers but with support. It gave me confidence and helped me really develop my skills”

 

Reflections and Outcomes on Speech and Language Therapy Provision:

We were able to offer earlier intervention to PWD and address a currently under-resourced area of need, which may prevent crisis further down the line. We were able to work with conversation partners / carers to develop strategies to support interaction, as recommended by NICE, 2018. We were able to establish a model for future service provision with potential for replication around the country. Collaboration with De Montfort University and use of undergraduate students enabled us to run groups without engaging additional staff from the department. We were able to use students as part of the workforce and provide them with an innovative placement where they were able to facilitate real positive change over a short space of time and develop important SLT knowledge and skills for their future careers.

Future:

The plan is to re-run the groups with implemented changes based on reflections from the pilot. We hope to use a wider variety of outcome measures to capture and evidence the positive changes that participants reported. The benefits of collaboration with DMU have been key to the success of running the pilot which is paramount in a climate of reducing resources.

References:

Braun M, et al (2010) Toward a Better Understanding of Psychological Well‐Being in Dementia Caregivers: The Link Between Marital Communication and Depression. Family Process. 49 (2) 185-203

Brydan, C. (2005) Dancing with Dementia. London. Jessica Kingsley Publishers.

Gallagher-Thompson D et al. (2012) International Perspectives on Nonpharmacological Best Practices for Dementia Family Caregivers: A Review. Clinical Gerontologist, 35. pp 316-355.

Spector A, et al (2003) Efficacy for an Evidenced Based Cognitive Stimulation Programme for People With Dementia: Randomised Control Trial. British Journal of Psychiatry. 183 pp.248-254

Volkmer, A., Spector, A., Warren, J. D., & Beeke, S. (2018). Speech and language therapy for primary progressive aphasia: referral patterns and barriers to service provision across the UK. Dementia, 1471301218797240.

All practicable steps: The forthcoming Mental Capacity CEN for SLTs

Many moons ago (five years to be more precise) I attended a study day for a group of speech and language therapists with a special interest in acquired neurological conditions. The theme of the day was the Mental Capacity Act and its relevance to the profession. It was such an interesting day, and I made connections with people with similar interest in this fascinating and important area and with whom I have maintained contact with ever since. Yet the discussions on this day were rather split. Many therapists at the event took the view that SLTs should not be advertising themselves as willing to assess people’s decision making capacity for fear of being flooded with an overwhelming number of referrals that we wouldn’t know how to cope with. Others felt quite the opposite, suggesting that supporting decision making and issues related to this should be part of our core business.

Since then, work around the implementation of the Mental Capacity Act in health and social care settings, the NICE guidelines and RCSLT guidance for example, has made it clear that all professionals need to understand the basic principles of the Mental Capacity Act. All professionals need to be aware that a person with an impairment of mind or brain may have difficulties in decision making and that should there be any evidence of this then an assessment of decision-making capacity may need to be undertaken. This assessment should only be undertaken if all reasonable steps to support decision making have been taken. And if they have been shown to lack capacity then a decision may be made in their best interests, depending on the decision at hand.

So what are speech and language therapists doing in clinical practice? There has been some data collected on the practices – a survey of SLTs across the UK was published last year (McCormick, Bose & Marinis, 2017, Aphasiology, 31(11), 1344-1358). This has collated some information on the roles that SLTs are taking (sometimes being assessor and decision-maker but often not being utilised perhaps because others don’t know about the breadth of our role) and the training that they are delivering to other professionals (mostly to allied health). That said there has been lots of innovative work done, and lots of work that needs to be done to develop practice further. Some SLTs are even specialising in Mental Capacity work both within and outside the NHS.

But a number of SLTs felt they needed a bit more support- from within the profession. A tweet set out by @jothespeechie illustrated that there was a lot of interest in such a group (over 100 people responded to this tweet). Amongst other things responses highlighted that SLTs would like:

  • To share practice from across the discipline
  • To share resources within the discipline and beyond
  • To spread the word about our role to other disciplines
  • To develop assessment practices and processes
  • To refine and define the role of the SLT in relation to mental capacity
  • To consider training- of new graduates and undergraduates in this area
  • To get regular updates on legislation and policy development
  • To influence research priorities in this area

And yesterday a group of SLTs gathered at UCL to put their minds together to get something off the ground. The team put together an application for RCSLT for the aptly named Mental Capacity CEN. We assigned a Chair (our fearless leader @jothespeechie), treasurer, secretary, membership secretary, social media secretary and study day organisers. We planned methods of disseminating information- look out for our forthcoming twitter handler, WordPress site, Instagram and Facebook pages. We have even started thinking about our forthcoming study days and have a list of ideas for potential presentations from existing committee members as well as individuals external to the group. We would like to host workshops and discussions. We are even planning to put together some work that might be published in the Bulletin magazine to disseminate anything we develop such as competencies or resources.

On a personal note I feel that the energy in the meeting was super exciting. It is important for us to have a voice in issues related to decision making and mental capacity. The legislation describes the functional test of decision making in relation to four domains- understanding, expression, retention and weighing up a decision. As a profession we have been studying at least 50% (more in many ways) for many many decades. We understand the subtleties of language and communication (even with individuals without communication difficulties) better than many. We are able to modify language to plan, accessible and inclusive communication. We can detect bias and inference. I feel that this is just the beginning of what we might be able to do for the people we serve (our patients) as well as for our colleagues!

So keep watch – we will be advertising our study days soon!

The NHS: Where are all the research participants?

At the beginning of this journey, before I had even started my PhD, when I was only just putting together the potential funding application for my NIHR fellowship, I was asked to estimate how many participants I might be able to recruit to my randomised controlled pilot study. At this point I hadn’t actually finalised the funding application (nowhere near), nor had I got a PhD place, let alone designed the intervention I was planning to trial. All I had to base my numbers on was a pragmatic guess, based on a service I had worked in (in a national central London NHS centre) for all of one year. I was the first SLT to have worked in this memory disorders service, and there seemed to be a fair number of people with PPA being referred. Having checked these numbers with the two other SLT services who had in principle agreed to participate in this theoretical trial, this was then multiplied by three. The two other SLTs also worked in large regional centres. And just to add, I would describe us all as optimistic people.

Once calculated, these recruitment numbers were used in my funding application, which I was awarded (yay), and thus approximately 9 months after making this calculation I started my PhD. In the first year of my PhD I did some other PhD-y work (a survey, a literature review) and I started my application for ethical approval to conduct the research within the NHS trusts who had, in principle agreed to host the pilot. I used the same numbers I had optimistically calculated a couple of years prior. Then toward the end of year two of my PhD, I received ethical approval (while simultaneously finalising the design of the intervention and doing some ironing out and road testing) and commenced R&D approval within each organisation. At the start of my third year I trained the three NHS sites. Or I tried to. In that time the service I had previously worked for no longer existed in the same form, so no PPA referrals. By this time the SLT at the second NHS trust was about to retire. And the SLT at the third NHS trust was under a lot of pressure, her department having undergone a re-structure. Initially, we only recruited a couple of participants.

So, I embarked on a mission to get more SLTs in new NHS sites on board. I emailed around to a number of SLTs working in dementia and identified three new sites- one as a participant identification centre (PIC) for the first site, the other two as stand-alone sites. Once an ethics amendment and local R&D had been sorted out, as well as training completed, it was nearing the middle of the third year of my PhD. One site was prolific- and recruited a number of participants to the study. The PIC site took longer to set up, lots of creases to iron out. And at the third site, the new neurologist started referring significantly fewer people with PPA. Then one of the SLTs became pregnant and another SLT’s short term contract came to an end and the department struggled to replace her.

So, toward the end of my third year, I added a few more (local London based) sites. This time I contacted local SLTs, anyone who worked with adults, who reported seeing the odd person with PPA. This represents most adult SLT services. I also found that as I disseminated work on my PhD project, a couple of services approached me offering to be added as research sites. Another round of ethics amendments, local R&D applications and training has dominated the first half of the fourth year of my PhD. The momentum is increasing and more people with PPA have been recruited to the study.

Of course not every client would like to participate in a research study, for various reasons. Yet there have been many participants, who have been incredibly generous and interested and excited by the study.

Despite it seeming rather strange to estimate how many participants I might recruit to a study in 3 or 4 years’ time, how else can we plan a study? Thus here are some tips to recruitment of participants in an NHS setting:

  • Recruit more professionals at more NHS sites than you think you will need – things change, people change jobs and you may find the sites are unable to participate at some point.

 

  • Monitor your recruitment closely and add more sites when you have a tiny flutter of an idea that you may need more – the paperwork takes so long you may as well get on with it.

 

  • Give the professionals you are working with a thorough training session, and all the materials they need, try to make it as easy as possible to participate in the study.

 

  • Encourage the professionals to think of the study as routine- if one had a cancer diagnosis one wouldn’t be surprised to be offered to participate in a research study, so why not offer a speech and language therapy research study.

 

  • Encourage the professionals you are working with, send them emails updating them on the project, thank them for their help, emphasise that they are an incredibly valuable part of the team.

 

  • Keep in regular touch with the professionals you are working with so they don’t forget about the study. Send Christmas and Easter and summer holiday emails. Try and email every two months or so at least.

 

  • Be available, send them your phone number, so they can call or text or email. Whatever they choose.

 

  • Most importantly. Persevere. Keep going. This is the real NHS and it is worth it.