When the man from Monty Python shares his tale.

https://www.flickr.com/photo/brizzlebornandbred/14391022818

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.

Oh the pain: Ethics

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I recall from what seems to be a dim distant past being advised to get started early on my ethics application for my PhD project. It was in fact the NIHR who put this in the letter when they first wrote to award me my fellowship. I confess that it didn’t particularly register this point as I was rather distracted at the news of getting the fellowship. And leaving work. And starting my PhD. At UCL! And getting on with the first stage of my research- that did not require ethics.

Then last summer my supervisor and I decided I needed to commence work on my ethics. We thought it might be useful to tackle it a little earlier than planned on my epic Gantt chart. Now I have run a marathon. Yet this feels rather like running a marathon and being told half way through you have a second marathon to run that no one had previously cared to mention. Yes, ethics is a mammoth endurance test.

As speech and language therapist in the psychology and language sciences department there was little guidance in the art of applying for NHS ethics. And although I am not quite finished I feel I need to put some things down on paper for others who may choose to cross the jungle. So here are a few tips and hints from my journey so far:

– It’s a massive document (bigger than your grant application most probably) so prepare yourself.

-If you know ANYONE else who has recently done their form ask for a copy- it will be invaluable.

– It is littered with danger zones: consent, data transfer, risks to patients. You need an eye for detail- it is useful to have someone helping you who has this skill.

-If you are working with people with dementia and you expect most people to have capacity when they do your study then do stress this in your application.

-If you are working with people with dementia and they are likely to progress during the course of the study stress that you will check their decision-making and consent repeatedly throughout the study.

-Refer to the Mental Capacity Act (2005) and the Code of Practice (2007) – it is really helpful to use this when writing about the consent process, particularly when considering whether it is in a persons best interest to participate in research and asking for a consultee to consent on behalf of the person.

-If you are working with people with communication difficulties create a ‘communication friendly’ Participant Information Sheet and Consent Form with input from people with communication difficulties themselves and mention they have helped in your application.

-Try to think of ways you could electronically transfer data safely rather than going to collect it. You may benefit from talking to your digital curators / data managers within your institution or even the Information governance people at the NHS sites.

-Get in touch with your local CRN- clinical research network. They should be able to support you in making your study work on the ground in terms of local buy in. Speak to them at some point before you submit.

-Keep going and don’t give up. You will get there. In fact you will also find it useful in developing and guiding your thinking around your methods and the study itself.

I am planning to join forces with another researcher and PhD student to write a few more tips and hints. I will keep you posted.

Exchanging notes on capacity

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Not that long ago the Dementia and Mental Health of Older Adults CEN (previously the psychiatry of old age CEN) wrote an article on the roles an SLT may take on when dealing with issues surrounding the mental capacity Act (Devereux et al, 2016). These were developed from a workshop we ran at one of our study days where we discussed the breadth of our roles and the responsibilities these roles may be accompanied by. The bulletin magazine (Royal college of speech and language therapy practice magazine) article in July 2016 summarised these discussions.

More recently another group of clinicians (Bamford, Dixon, Mather et al, 2017) have responded to this with another article in the Bulletin magazine. This article builds on what was previously written by delving into the roles and providing clinical examples of where SLTs have acted in these roles in response to clinical situations. The article showcases some wonderful examples including a case where the SLT acts as an assessor in examining the decision making capacity of a young women with a learning disability around using the Internet. The authors also provided a great example of the role of the SLT as a trainer; they describe two training sessions delivered to a group of 40 social workers on the role of the SLT. The authors emphasise how this type of training can support other health professionals to engage with SLT support more appropriately in terms of our role in assessment and best interest decision making.

How wonderful that we as a discipline can have this conversation. When health professionals do not feel competent in an area of practice they are less likely to engage In work in this area. SLTs are starting to feel more competent in this area. SLTs are having more conversations, doing more research and providing more examples of great practice.

The Dementia and Mental Health of Older Adults CEN (previously the Southern Psychiatry of Old Age CEN) are planning to do more learning around advance planning. I feel this is an area where SLTs can really support people in engaging in advance planning, for example creating appropriate documents and tools to support people to express their wishes and preferences. I look forward to hearing the next stage in the debate!