My wonderful consensus group! (and by that I mean the wonderful participants)

I am writing an extra special post this week to thank all the amazing speech and language therapists (SLTs) who participated in my consensus group on Tuesday afternoon. The group was hosted by the Dementia and Mental Health Clinical Excellence Network. I was lucky enough to have 36 extremely enthusiastic and interested SLTs who attended the session.

The meeting used Nominal Group Technique- a method of gaining consensus without undue influence from one particular person or a couple of people. This involves asking people to generate ideas to a question (in silence) and writing these down. Then going round robin style to share ideas, clarifying and discussing them briefly before individuals silently choose their top 8 ideas and write them on separate cards. Participants are then asked to rank the ideas individually. 8 being most important, 1 being least important (putting the cards away as they make decision), then 7& 2, 6 & 3, 5 & 4. These are then collected and collated for analysis. The ratings can be reviewed for further rating and ranking to refine the consensus process.

Prior to the meeting I had felt anxious that the SLT participants may find it boring and tedious and generally a methodological blah! But to my surprise I had really positive feedback. Not only did people highlight that being involved in research made them feel they were being heard but also that the process itself was clinically useful. People described feeling that they had really reflected on their practice and what the key components of the intervention are that they themselves deliver. They felt they refined their motivation and rationale for this activity. A number of people also reported enjoying the process of hearing others opinions and felt this was a great way of learning.

I hadn’t necessarily anticipated the clinical sharing and learning component of this exercise –  of sharing knowledge and developing skills. The committee of the CEN suggested they may even use this type of method again for workshop tasks! What a great experience. I am so grateful to have had this opportunity to integrate a real breadth of clinical expertise into my research project. Now to analyse the data! Argh!

The next hoop- getting research off the ground.

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Big news:
Me: I have been successful – my research project has been given ethical approval!
You: Fantastic, congratulations, so when does your study start?
Me: Well…hmmm…yes… did I mention R&D approval?
You: Huh? What’s this?

So let me explain- having been awarded ethical approval by the Health Research Authority to conduct research in the NHS I am now in the process of communicating with each of the individual Research and Development departments within each NHS Trust. This should be moderately straight forward as the appropriate paperwork such as the mysterious and complex “schedule of events” has also been approved by the HRA. Having said that I am slightly dreading negotiating the details. In general the trusts I am working in have tiny weeny speech and language therapy departments that don’t necessarily sit where the research is happening – for instance in one trust (as in many) the SLT is managed by the physical health trust next door to the mental health trust where the research is happening. Not an unusual arrangement for us. I wonder if these awkward arrangements disadvantage us in research- we will see.

I am pondering the future- anticipating obstacles so I can be more prepared! I am continually liaising with stakeholders (such as the amazing SLTs who are enthusiastically preparing to host the study) and persevering. In keeping my chin up I am able to view things more broadly – I feel I am developing my skills and learning heaps and am sharing all this with anyone and everyone who will listen. I hope that sharing these experiences and unforeseen challenges can support more SLT researchers to conduct more research in the NHS itself. The NHS is a great resource and patients can directly benefit from research happening within the organisation. I heard somewhere that patients seen in a trust where (NIHR) research is happening have better outcomes. And better outcomes are the reason I am ploughing determinedly onwards!

When the man from Monty Python shares his tale.

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On Easter Sunday my husband thrust his iPhone in my face  happily yelping out; “It’s the Monty Python man, the one with dementia, he is in the paper again”.

Dementia, fronto-temporal dementia and the language variant; primary progressive aphasia, are not diseases I would wish upon anyone. In fact I would never ever wish illness on a person. And yet when a famous person such as Terry Jones suffers this disease it provides a great platform for raising awareness amongst the public.

The article my husband brandished under my nose describes fantastically how people with PPA can lose their ability to communicate, whilst remaining otherwise fit and able to undertake other activities such as walking, watching familiar movies, going to restaurants and maintaining relationships. The article highlights the close relationship that Michael Palin has with his old friend; the value of non-verbal communication and the pleasure of continuing to partake in normal social relationships. The journalist also flags the pitfalls- Terry is now unable to express his opinions, he has changed – no longer able to lead a conversation. In addition he is rather impulsive and he may not have full insight to his condition. This is the nature of PPA. I am so impressed his friends continue to maintain contact, having regular catch ups in restaurants and so forth. Not everyone has that supportive social circle. I suspect it is still rather difficult for him and his family and friends- they may not be sure they are doing the right things, that there is not some other conversation strategy that may work better. Not knowing what someone is actually thinking and feeling is, according to many of my patients and their families, one of the hardest things.

The family have made public their wish to share his tale in order to increase awareness. What a fantastic family. I am always amazed and humbled by how keen people are to help future generations – to contribute to the research and spread the word. These are people who inspire me!

https://www.theguardian.com/society/2017/apr/16/monty-python-terry-jones-learning-to-live-with-dementia

Ethics: the final touches


So the verdict arrived- exactly 10 working days after my NHS Research Ethics Committee (REC) meeting. All these mysterious stages one has to progress through are rather fascinating. This is the provisional opinion letter stage.

The letter provides a transcription of the conversation that occurred during the meeting. Slightly strange  seeing myself being quoted as Ms Volkmer stated…Having said that I can’t recall any or much of what I said and looking at what they have written I sound ok. Like perhaps I actually can convince others that I might know what I am doing!!!? At least as according to their transcription that particular Ms Volkmer sounded like a professional researcher- was that really me!?

I think what really made the difference were some tips I was given for the REC meeting. Here they are (plus a few extras from me):
– Take a note pad and pen to show your keen to get their feedback and ideas
– Be open to their questions and ideas: do not under any circumstance act defensive
– Take on board what they say- smile and thank them for their interest.
– They are there for the safety of the patients – think about it clinically. What would keep people safe in your study? What if a patient suddenly declares they are depressed or distressed during your outcome measures?
– They are also considering your safety and that of any collaborators/junior researchers in your study- think about lone working procedures etc
– They know as much if not more than you but not necessarily on your topic- be ready to explain things- but respectfully.
– They may spot things you and your supervisor miss! So handy  and perhaps a bit reassuring to have another group of eyes on your work!

The chair stated that my project was interesting! (Yes! Fist pump!). Anyhow they have made their provisional opinion clear now phew. Just a couple of details to change. I must amend a sentence and make one other change. Fingers crossed. I’ll let you know when I have actually crossed the ethics finish line and am holding that final letter or whatever they send/give in my grubby little PhD researcher paws!!!!

Ethics: The bit they don’t tell you about!

So for those who haven’t ever submitted an NHS ethics application well phew…..it is a long old slog. Others of you who have – particularly if it was recently then you hear my pain. You may have read the summary of tips and hints I wrote. All I can think of is sharing as much of the experience as possible – I think I may need a virtual ethics emotional support group – for me!

My ethics application has felt like the bit of research people don’t talk about in advance perhaps similar to the parenting stuff people don’t like to talk about in advance either (eg the bit of pregnancy where I got super angry, the whole AWFUL embarrassing things children say in public and the stress of juggling school homework eurgh… I didn’t realise it would feel like MY homework).

Anyhow I am sharing my pain! Sure people said start the ethics application early- my supervisor, my funder and colleagues who had started their PhD ahead of me. So I did start earlier than I had intended- but now I realise I really should have started even earlier. It took forever! Tip no. 1: believe people when they say start early and then start as soon as humanly possible.

Then- don’t give up. It may feel like a test, or a torturous painstaking process to put you off research. However keep in the forefront of your mind that this is for the safety of you and your participants it really is. It is worth reading the horror stories of what previous (horribly unethical) researchers have done. This is why the process is there and it is for the good of the people. Tip no. 2: Remember it is for the good of the people.

Anyhow here I am 9 months later- see I told you it was like having a baby! Today I attended my research ethics committee meeting. The last hurdle- this group of 14 expert and lay committee members are the last hurdle to getting my ethics. So I went at my allotted time- 2.50pm and waited in an empty room until they were ready. And was then invited in for “questioning”. Tip no. 3: They are not mean, they are lovely and will give you helpful guidance and advice (Take in a notepad and pen to make notes- you will look attentive and interested in their feedback then, you also feel better clutching something!)

And the questions begin:
“This is a very interesting and worthwhile area of research”
(So lovely)
“Tell us a bit about it”
“Expand on this (consent)”
“Describe that process again (videoing)”
“Hmmm you may like to change this (images on a questionnaire and use of language on another questionnaire measure)”
“Great use of PPI”

Some frowning, mostly smiles I think!? Am I remembering this correctly? I may be delirious but I seem to have survived (just like giving birth). Tip no. 4: Remember your research is interesting and will be better for having as many eyes on it as possible.

Now I must wait a few more weeks (which seems an awfully long time!) for the final word….I will let you know what they say!

Endurance running and PhD upgrades.

I have to make a small confession, which I often do on my blog. I didn’t know I would have to do an ‘upgrade’ during my PhD until I was about 3 or 4 months into my PhD. So for those who don’t know- when you register for a PhD you are registered as doing a Masters of Philosophy. Around the end of the first year (or if your part time like me a little later) you must submit an upgrade report on your work to date and then attend a viva where you present your project and are asked questions about it. If the academics doing your upgrade feel you have done enough and you are online to achieve a standard of work adequate for a PhD you are ‘upgraded’. Consequently you are registered as a proper PhD student! Fantastic!

In the lead up to my upgrade I did my research- picking the brains of students in the years above, looking over their ridiculously clever reports and asking them about the types of questions they were asked. I wrote my report with lots of advice from my primary supervisor- who is an amazingly supportive person providing lots of really useful advice and helping me to refine my writing style. I think it is with her advice I am slowly starting to learn to write like an academic…maybe.

Yet this entire process reminds me of my marathon preparation process. I sought advice from magazines and other people who I knew who had run marathons – I collected a few training schedules and swotted up on appropriate diets. I even felt a few weeks prior to my event that I might be doing ok- I CAN run a marathon, I know what I am doing. No blisters or bonking for me. (FYI bonking is a technical term when you ‘hit the wall’  or you feel like you can’t go on).

Now, I sit in a lovely office full of lovely PhD students and of the 5 students doing their upgrades in my year I was the last. Ordinarily I am quite calm and collected in advance of a marathon or big interview. However being ‘the last’ meant I experienced and observed all the panic and paranoia that they all went through, in fact I found it was infectious. My worry started ramping up far too early. My husband always dreads my (normally brief) pre-marathon panic. It tends to go something like:

Me: “oh no why did we enter this marathon?”

Husband: “you wanted to”

Me: “But it is not a good idea- we are never going to make it, we are doomed, its going to fail…”

Husband: “sigh”

 

My pre-upgrade panic was similar BUT started much earlier and went something like:

Me: “why did I ever choose to do this PhD?”

Husband: “but just the other day you were saying you loved it”

Me: “but I am going to fail my upgrade, then everyone will know I don’t know anything and I am NOT cut out to be a PhD student”

Husband: “sigh”

 

My post marathon/upgrade conversations often seem just as silly (NB: I PASSED MY UPGRADE THIS MORNING YAY):

Me: “I passed”

Husband: “I told you so, well done”

Me: “no, you never said that! I didn’t know you thought I could do it”

Husband: “sigh”

And we all smile and breathe a happy sigh of relief….

Editing: a pleasure and a pain

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I once met a women who loved to edit; she described it as her raison d’etre. I don’t think I could hide my simultaneously horrified and also rather impressed facial expression. I suspect it is the same expression I have when my mother in law talks about cleaning. And yet my feelings towards editing my own work are rather similar to the feelings I have when contemplating cleaning; namely a mixture of fear and glee. And indeed there are quite a few big documents to edit during a PhD.

I tend to approach both tasks methodically. I start at the top and finish at the bottom with minimal deviations. Deviating from the logical course I have chosen tends to take up more time and thought- going up and down the house or a document, stopping and starting a task or train of thought are a waste of precious time. I find plowing through both easy and difficult tasks as they arise much more economical.

I find I must never shy away from a difficult task; be it scrubbing the oven or searching for additional appropriate justification. Both may take up a lot more time and effort than I would like but are just as important as quickly emptying the bin or correcting a grammatical error. In fact I value variety in tasks simply to provide a little respite. Sometimes I can enjoy a ‘light and easy’ task as a reward for completing the previous more tricky one. Trying to work on a series of really difficult things all in a row can become rather demoralising.

The truth is that towards the middle of these chores I start taking a bit of pleasure in the task at hand. And it always surprises me. I start to appreciate the sparkling, crumbless floor and the neatly justified lines of text. By the end I am sometimes a little satisfied and house proud!?!?

I have just finished editing a rather large document- my upgrade report. In order to continue on my PhD journey I must demonstrate my achievements to date. First this report and then a viva in a fortnights time. This is all a routine part of being a PhD student. Next up is writing my presentation for the viva. EEK! Wish me luck.