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Research, drugs, treatment, new diagnosis Forum for medical issues, and for the recently diagnosed (and families)

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Old 11-11-16, 01:45 PM   #1
Allan
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Default The HD-Patient-Centred Revolution

.
Plagiarism is the practice of taking someone else's work, ideas, images, sounds or words and passing them off as your own. I’m not passing this off as my own but I’ve thought these same ideas for a long time, even going back to the 1960’s when I myself was a scientist - an Information Scientist.

What I am now engaging in is The HD-Patient-Centred Revolution. The following stuff which I’ve gathered and adapted implies that Patient-Centredness needs to be at the top of any Clinical Research agenda. Going further down that line of thought is that there needs to be hd-patient representation in all things based on Huntington’s Disease research – whether it be the ongoing Clinical Research or the inclusion of the hd-individual taking the lead in pronouncing what is right and what is wrong with communication [or the lack of] between the Medical profession as a whole and the hd-individual. We know that the Medical and Care professions, in general but with some notable exceptions, know nothing of the working mind of the hd-individual.

It’s all Lies, Damned Lies, and Medical Science: Much of what medical researchers conclude in their studies is misleading, exaggerated, or just plain wrong. Researchers are generally “hoist with their own petard” causing inaccurate conclusions and a wastage of funding in the majority of cases.

Targeting CAG repeat RNAs reduces Huntington’s disease phenotype independently of huntingtin levels

The messenger in Huntington’s disease

The two articles above describe the same research. It’s a bit like the HDBuzz situation - one is very difficult to read and almost impossible to understand; the other is readable but still, not necessarily, understandable.

Then there’s this guy who’s made a career out of …

Why Most Published Research Findings Are False

How to Make More Published Research True

Why Most Clinical Research Is Not Useful

This is abundantly clear in the recent case concerning Michael Hayden and TEVA Pharmaceuticals:

Pridopidine Demonstrates Slowing of Progression of Huntington Disease in PRIDE-HD Study as Measured by Total Functional Capacity

Sorry folks, the PRIDE-HD trial did NOT show that Pridopidine slows the progression of Huntington's disease

So, what’s happening about Patient Centredness in hd-Clinical Research … are we getting there?

How can we empower those affected by Huntington’s disease? By creating an hd-patient-centred care pathway, of course. Useful research is known to be patient-centred. It’s done to benefit patients or to preserve health and enhance “wellness”, not for the selfish needs of the Medical profession, Scientific investigators, Pharmaceutical companies, Institutional sponsors or, indeed, the global Social and Mass Media outlets.

Useful clinical research should be aligned alongside patient priorities, the values and benefits patients assign to different problems and outcomes, and how acceptable they find “therapeutic” and other interventions. hd-patients and their families are often bombarded with information that tries to convince them that substitute therapies or other unimportant outcomes are important - such short-cuts are deemed to have commercial Pharmaceutical benefits or to enable fast scientific publication and the academic career advancement of the researchers involved.

There are many millions of papers of clinical research - approximately 1 million papers from clinical trials have been published to date - but most of them are not useful. Waste across medical research [clinical or other types] has been estimated as consuming 85% of the billions spent each year.

The key features of useful clinical research, and the current state of affairs, suggest vast areas for significantly improving clinical research - and developing the correct tools for assessing its value and effectiveness - or lack of - should be more straightforward.

Is this the way to do it? http://hdresearch.ucl.ac.uk

The way in which a clinical trial is designed provides an opportunity to empower the participants in the research process. Until trials routinely use more patient-centred systems, it is uncertain whether any advantages will translate into actual gains for hd-patient-centred health care.

Many of the features that make clinical research useful can be identified, including those relating to the problem base, context placement, information gain, pragmatism, patient-centredness, value for money, feasibility, and transparency. Many studies do not satisfy these features, and very few studies satisfy most or all of them. Most clinical research therefore fails to be useful not because of its findings but because of its faulty design.

Change is needed. Altering the approach could easily produce more clinical research that is useful, at a massively reduced cost … and with hd-patient-centred input.

Join the hd-revolution and speak YOUR mind! Tell how the current system should be for YOU.

.
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Old 12-11-16, 01:28 AM   #2
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Default Re: The HD-Patient-Centred Revolution

Hi Allan. I feel I am the only one like me because of how the professionals I come into contact with react to me. They speak to me like it's within my power to sort things out myself. I am desperate to be involved in a HD centred approach. I am not in denial as such, as I understand that my thinking is not as it should be, but equally I can relate to what Jacqueline is describing because I also refuse to see professionals. I believe with every fibre of my being the reason I do this is because of my mistrust that I have for all professionals because they want to suggest how it must be for me, put me into a box that sits nicely within their own remit and experience and not listen to how I describe it actually is, because they can't quite believe that I could look and present as I do and yet be experiencing such torment. I am either lying or don't know my own mind enough to understand what they are saying to me. I also believe that HD symptoms are vast and varied and intertwine with each other and when a professional hears something that sounds like something that they have heard before they think that it must be it. Its because of how HD affects me that I cannot speak to any professional and I don't have a GP, in fairness I have tried on 2 occasions and left in tears so I am not going again. Gary went this week to get his depression medication increased and during his conversation with his GP they concluded that I was the cause for the need for an increase in his medication and on hearing I had HD he had to get a book out to read what the condition was and this is 2016! He said he has never heard of it. When we joined the practice Gary asked if there was a doctor who knew about the condition who I could see and was told that no one at the practice did. Today Gary rang our old doctor to see if I could go back to her even though we have moved away from the area and she was very polite but said it wouldn't be feasible as I may eventually require home visits and by the way when she WAS my doctor I never visited and everything was done through Gary as the third party and then she asked after Alfie our son and wished Gary well! She didn't even asked how I was. I feel like I am an embarrassment, like a nuisance, haven't I sorted it out yet, I can walk and talk therefore what am I complaining about. So no GP and not likely to be any time soon. My carer who has been visiting me for six weeks now for a few hours a week over 3 days knew nothing of my condition before she began and there hasn't been one occasion that I haven't agreed to see her, I can't say I look forward to it because I don't experience things like that anymore but I know that she makes a difference and I know that I wouldn't like it if she didn't come and I trust her fully. Why, because she gets how it is for me and she understands why it has to be done like that. She has 21 years of nursing experience and she says that I am not depressed and what I am experiencing is 'huge'. She cannot understand why support from services is not in abundance for me. It also proves that I can cooperate and although I would rather not accept any help from anyone I can understand that I am unable to leave the house or participate in a simple task of being in a coffee shop without it. The difficulty is what matters to an average person doesn't actually matter to me and I wouldn't care less if I never left my house or if I never ate again or got dressed but I have enough understanding to know that whilst I am alive I have to try to continue to live and that is what by visiting me she is supporting and encouraging me to do as is Gary. I also understand that living would be easier if I accepted more help and I am fortunate that I have more hours available in my care plan but my carer cannot do more hours and so it means another person and I am fearful and resistance to this and so nothing changes. My resistance to any help is ENORMOUS and very unhelpful to those around me and myself but I cannot change it, so I understand that perhaps if you spoke to all the professionals I have spoken to they might say how can you help someone who keeps repeating that they don't want any help. I don't, but I have faith that if you spend the time reassuring me that it will help me live and understand the baby steps necessary I might just be able to. My carer is managing it so maybe there is someone else out there and maybe if I had HD person centred review as Allan quite rightly suggest, it might get resolved. Lily.
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Old 12-11-16, 01:53 AM   #3
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Default Re: The HD-Patient-Centred Revolution

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Originally Posted by jacqueline View Post
All I know and seen of my 9 years experience is that the HD patient is usually in denial, unreasonable and aggressive in later stages. Sometimes even in early stages. And wont accept any professionals in their life.
So how can it possible to have, The HD-Patient-Centred Revolution.

Of course my experience is from my family. But even speaking about other families it seems to be the same story mostly.
Hi Jacqueline

Your view isn’t my view of this disease. I think that, in general, those people who are symptomatic in the 40-60 age range possibly react slightly differently to those who become symptomatic at 60+. The younger group, 20-40, possibly have more variations in their emotional lives and do, occasionally, allow “professionals” into their lives and homes. There are, of course, always exceptions in each age group category.

These thoughts on changes in approach and thinking link directly into Lily’s “Pondering” thread in General HD Topics. It’s all about not being listened to correctly and also about being misunderstood as an hd-person.

All I was saying, in a sentence, was that clinical researchers need to know the idiosyncrasies of the hd-person and have some empathy and then, maybe, funds wouldn’t constantly be squandered on false research hopes. Maybe researchers could gain a human idea of why they are actually employed as researchers.

As you will have seen from the survey that has appeared on the HDA FB page: https://eu.qualtrics.com/SE/?SID=SV_6VWwZ93PwmDJFfT … it all becomes very complex and error-strewn when there is no knowledgeable input from the hd-person or the hd-family – it’s just a PhD student clutching at straws.

That’s a major reason why changes need to be made – on behalf of those “in denial, unreasonable or aggressive” and can’t conduct their own regular life patterns with ease. I should say that there are probably 8-12,000 people in the UK who could play a major role in any future research. European and world-wide hd-working groups certainly take note of hd-families and their issues. So, why not infiltrate the scientist’s laboratory and create a more wholesome approach to research.

There are many people who may be hd+ but not symptomatic and those who are symptomatic and in the early stages who can offer the medical professionals and clinical researchers excellent information, advice and get them to climb down off their high horses.

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Old 12-11-16, 12:10 PM   #4
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Default Re: The HD-Patient-Centred Revolution

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Originally Posted by allan View Post
hi jacqueline

your view isn’t my view of this disease. I think that, in general, those people who are symptomatic in the 40-60 age range possibly react slightly differently to those who become symptomatic at 60+. The younger group, 20-40, possibly have more variations in their emotional lives and do, occasionally, allow “professionals” into their lives and homes. There are, of course, always exceptions in each age group category.

These thoughts on changes in approach and thinking link directly into lily’s “pondering” thread in general hd topics. It’s all about not being listened to correctly and also about being misunderstood as an hd-person.

All i was saying, in a sentence, was that clinical researchers need to know the idiosyncrasies of the hd-person and have some empathy and then, maybe, funds wouldn’t constantly be squandered on false research hopes. Maybe researchers could gain a human idea of why they are actually employed as researchers.

As you will have seen from the survey that has appeared on the hda fb page: https://eu.qualtrics.com/se/?sid=sv_6vwwz93pwmdjfft … it all becomes very complex and error-strewn when there is no knowledgeable input from the hd-person or the hd-family – it’s just a phd student clutching at straws.

That’s a major reason why changes need to be made – on behalf of those “in denial, unreasonable or aggressive” and can’t conduct their own regular life patterns with ease. I should say that there are probably 8-12,000 people in the uk who could play a major role in any future research. European and world-wide hd-working groups certainly take note of hd-families and their issues. So, why not infiltrate the scientist’s laboratory and create a more wholesome approach to research.

There are many people who may be hd+ but not symptomatic and those who are symptomatic and in the early stages who can offer the medical professionals and clinical researchers excellent information, advice and get them to climb down off their high horses.

.
Well said Allan!
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Old 12-11-16, 01:19 PM   #5
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Default Re: The HD-Patient-Centred Revolution

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Originally Posted by LECS View Post
Hi Allan. I feel I am the only one like me because of how the professionals I come into contact with react to me. They speak to me like it's within my power to sort things out myself. I am desperate to be involved in a HD centred approach. Lily.
Hi Lily

Your comments and statements of intent and lifestyle choices really help me get through each day with my son. What I do here on the MB, as you might have guessed, is to place ideas and random thoughts for others, you in the main, to react or respond to. What you say and describe in your lengthy posts is what I see on a daily basis in my son, especially your latest gems:

“They speak to me like it's within my power to sort things out myself.”

“My carer who has been visiting me for six weeks now … knew nothing of my condition before she began and there hasn't been one occasion that I haven't agreed to see her, I can't say I look forward to it because I don't experience things like that anymore but I know that she makes a difference and I know that I wouldn't like it if she didn't come and I trust her fully. Why, because she gets how it is for me and she understands why it has to be done like that.”

“… and I wouldn't care less if I never left my house or if I never ate again or got dressed but I have enough understanding to know that whilst I am alive I have to try to continue to live and that is what by visiting me she is supporting and encouraging me to do as is Gary.”


I think what I’m trying to say, and you put it so eloquently, is that if a Carer can “get it” why can’t the medical people – from the GP to the Neurologist and all the clinical and scientific researchers in between. HD is about you – not them.

S is about to spend 8 days in Respite Care [or a holiday as he calls it] whilst his bathroom is being converted to a wet room. He has chosen to do this after visiting the place earlier in the week. He enjoyed meeting the staff and the residents and had lunch there. He is only able to do this after listening to what I have carefully explained to him for the past couple of months – and my explanations have been tempered and changed regularly by your input. Although you didn’t know it your explanations of your events and incidents have allowed me to change tack regularly and get a halfway decent thought\point\message through to him. My thanks to you for that.

You may have seen nightowl’s request and my response here: http://hdmessageboard.com/showthread.php?p=64461#post64461

I have taken the liberty of breaking up your message above into shorter sentences and paragraphs and cutting and pasting it into these speech readers:

www.naturalreaders.com

www.fromtexttospeech.com

http://ttsreader.com

… and then listening to your message. Is this something that might help you to “communicate effectively”? If not, just tell me to go and take a running jump …

.
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Old 12-11-16, 02:56 PM   #6
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Default Re: The HD-Patient-Centred Revolution

Gosh Allan and Jacqueline I didn't know or realise that you found my posting so helpful, I am totally taken back by it but I am really glad. Speaking verbally and making sense of what is being said and finding the right reply or listening is so difficult for me but writing about it and how I am affected and how I am thinking is not, it just pours out and that what leads to my frustration because I understand how it affects me so well I forget that others can't see it or forget it's there and I make huge assumptions that if I know, so must they. I'm also frustrated because I don't know how long I will be able to write about it and it would be good if I could help professionals understand but I cannot do it verbally and anyway none of them are actually asking. If it was me I would say well that clinic visit didn't go so well I will try writing to her a few days later, but nothing. I can't remember it all but I was asked why was I there, why had I attended clinic and it had been 2 years since he last saw me because I had seen his understudy in between time with disastrous affect and it was all forgotten, no joined up thinking at all. I think they are too interested in ticking as many boxes instead of simply acknowledging how difficult it must be, thank you for coming and what support are you receiving and is there anything that I can do to make things a little easier instead it's about how much the HD person is affecting the life of the carer and how much they have changed and how difficult it is to put up with them and what medication can you give them to make the worst symptoms of them stopped irregardless of how it affects them. It's because the symptoms of the condition are not sociable and require above and beyond patience and understanding from the care giver. People need to think of a time when they felt that they had performed at their worst and then quadruple it and then you get close to how I feel outside of my home even though I look like everyone else. Its a normal reaction to support that there are rules that need to be follow and for most people they can do what is required but I can't and rather than make me or chastise me why not find a different way of getting the same result. I can't buy groceries in a shop even with help and my social worker with her normal remit head on didn't want me deskilled so asked I shopped with help, nicer i suppose but made absolutely no difference to me, I still couldn't shop, she just asked what I wanted in the trolley which actually added to my woe, now on my say so, I give her a list and she gets the shopping on her own and brings it to me. It's great and I feel much better. Deskilled yes but I no longer have the skill so please do it for me. I wish you both and all well and I am thinking of your S Allan, never give up fighting his corner and always believe the best of our HD sufferers because they won't be doing what you don't want them to do on purpose. Love Lily
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