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!
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!!!!