I am new to the HDAC forum and new to finding friends in cyberspace in general, so I guess that makes my age evident.

My Dad developed HD when I was a teenager and died 14 years ago. I was tested 13 years ago, and given a gift of 14 and 18 CAG repeats. I hear of people in my situation feeling guilt but I feel only gratitude and a deep sense of responsibility to my family and other HD families. Since testing, I have retrained myself to work with HD patients, and know more than ever what a novice I am. If nothing else, HD has taught me humility.

As a health care professional, I have had many occasions to talk to my colleagues about HD, my family, and my risk. I have experienced a range of reactions, from blank apathy to naive opinion to arrogant scorn to compassion and competence. I only count the compassionate and competent responses, and learn to recognize the others.

I hear from my HD families that they have experienced some helpful and some harmful reactions too.

So I would like to know what you would like to see in your health care providers. Not just what you want changed, but mostly what you appreciate and find helpful. It can be really simple things, like being on time or offering chocolate milk in the waiting room, or more complex things, like helping you talk with your at-risk children or contemplate your last days. Feel free to be creative.

I hope and pray for a cure or treatment, but all I can do today is invest in the present. I believe that there are many things that can make life valuable now for HD patients and the people who love them...medications, better preparations, open communication, connection to spirituality, being part of a community of people who care, to name a few.

But what do you think?

Welcome.

welcome to the forum . db

Hello MedMo and welcome to the site. We're happy to hear that the coin fell in your favor. Is there a particular reason you're looking to hear what others want in healthcare providers? There are numerous threads on this board that identify many issues and opportunities in respect to the HD family - healthcare provider relationships.

I'm working with a group of doctors who are putting together an outreach type program to improve access to care in our state, and I think it makes sense to figure out what people really want, not what we think they want. You know how it is, you get an idea about problems from your own perspective, and miss out entirely on the big picture. I hope to build an HD community here, but that's a big task. You have to start somewhere, and I'm trying to figure our where to start. Maybe I should just listen for a while...

Hi medmo-

If you don't mind my asking, what state? I'd be interested in getting in touch with you directly to hear more about your approach to figuring out what people really want (great idea!) particularly if it is HD specific.

Robi

Robi Blumenstein
CHDI Management/CHDI Foundation
robi.blumenstein@chdifoundation.org
www.chdifoundation.org

medmo,

As a former caregiver, I'd like to see a more unified approach to HD. I'd like to see doctors agree what disiplines to advise the family to see. I'd like to see doctors agree on a practical careplan for HD patients.

Right now, most GP's are clueless. Neuros and Psychs can mix up meds so much and argue that you really don't know how to stablize patients with HD.

I'd like to see a concerted effort to brief the caregiver of all the ramifications of the disease as early as possible and point them in the direction of the proper family services, or even help define family services for both the patient and the family. As you know, HD is a helluva lot more than just the pHD's problem.

It would be nice if doctors could agree on the proper meds early on, instead of trying 1000 different types. I don't know how many doctors my wife has had over the last few years between the originals, hospitals, nursing homes and the like. She's had nurse practioners give meds, GP's, psychs, and NH contracted services.

Each one says the other didn't have it right. In my opinion, that's one of the biggest problems facing pHD's is the lack of knowledge on the proper meds to bring patients to and the total lack of communication between doctors. It's pathetic. It's like a doctor doesn't want to spend 5 seconds reading a report from a neuro, psych or other doctor.

Hi Medmo,

Welcome to the forum. You pose a great wide reaching question. My perspective is similar to yours as it comes from both sides health care provider:patient relationship. While most of my days are spent dealing with routine pediatric care, I occasionally have to give parents devastaing medical news about their children.

I am guessing that my opinion will be somewhat controversial.

As a member of an HD family, I have fear of the future and the disease in general. However, our family motto has been that fear in the enemy of action. It has been my impression that nearly ever health professional dealing with HD is too fearful of the disease. I would ask them to respect a human's ability to adapt to HD and be forthright with their patients about the possible effects of HD and then support them if the HD patient is willing.

I believe there are many examples of of HD health professional's care being hindered or paralyzed by their fear of the disease's possible impact on the patient. A simple example of professional fear is that many professionals have refused to divulge the CAG counts to their HD gene positve patients over the years. As a pediatrician, I cannot think of a medical test result that I or other pediatricians would not tell the parents. I once asked a member of the HSG and local HDSA COE if they could think of a medical test which is not divulged to the patient. They could think of one other test, an experimental test for early onset Alzheimers. Perhaps there are other test results which are deliberately withheld from patients.

Few experinces have improved my medical practice more than my observations of and relationships with HD healthcare professionals.

All for now,

Tim

I don't think Steve didn't mean don't ask. I think he meant that besides any answers you might get by the direct question you can supplement by researching the site too. I know that's time consuming but big picture answers means looking at things from lots of angles.

Some here may answer "I want doctors to have a better understanding of HD." But do they mean understand so that drug choices are different.. or so the doctor can help explain why a driver's license conversation has to take place in the office because the caregiver isn't being listened to? A good doctor might just ask.. Are you still driving? Then follow up with the recommendation that that activity is no longer acceptable, because a doctor has more authority than anyone in the household with the person with Huntington's disease. They need to know exactly what they are saying and to whom. If a doctor says I see a little progression but you are basically fine... all the person with HD may hear is they are fine.

I always thought that a doctor who accepts a person with HD as a patient should take a day or two a year and hang out at a COE to talk with that staff in person and see things in context. It won't make them an expert in a day.. but it would give them a basis for treatment and a contact for sticky situations for which that doctor can consult on. I have always assumed that about any COE would be happy to have a visiting doctor as most are in teaching hospitals anyway. In fact going to visit yourself might be a good idea if you haven't been. Living with HD and treating it are two different things. I wouldn't have had any idea how to answer the question years ago... and still don't in A-B-C fashion. It's more a case of knowing it is done right when I see it. Not that guidelines can't be set. Having a feel for HD and the patient and family though would be something best experienced along with being read about.

Tim said: "A simple example of professional fear is that many professionals have refused to divulge the CAG counts to their HD gene positve patients over the years"


While I don't doubt for a minute that's true - I simply think that kind of attitude from a physician should be banished to "ancient history", where it belongs!

Used to be that physicians exhibited such god-like presumptions. And patients actually GRANTED them that!

Surely we're beyond that. We have patient rights, and all that!


One of the characteristics that I most admired about my neurologist is that she patiently explained all of my issues, as to HD.

And she intellegently respected my rights as a patient. Right to know. Right to privacy. She went out of her way to respect both.

No treating me like a mindless idiot!

So, if you want to know what I value in an HD health-care-provider - that would definitely be right up there at the top!



jl



Edited 2 time(s). Last edit at 08/21/2009 01:32AM by jl.

Hi!! and Welcome!!

Besides all of the little things that come to mind like ..all I want is Dad to be comfortable, happy, and enjoying his life...Eric did hit it the hammer on the head.I agree w/professionals dealing w/HD patients should spend some time at a COE meet the clients, the researchers, the doctors etcs..COEs would gladly give ideas to assist and it would give those envolved the proper perspective for whom they are treating.

DCB
*Living for today*

North Carolina. We have created the North Carolina Center for the Care of Huntington's Disease, partnering with doctors from around the state, and hoping to hire a social worker to create connections between patients, families, care professionals (from experts to primary care), social networks, anything that will reduce the burden of work that families face. We have about 80% of the money raised to hire the social worker, a bit more to go!

One thing that was very helpful to me and my family doctor was this. She was very honest with me, and told me in med school they spent all of 5 mins learning about hd, and of course, she was in med school before they even had the genetic test for hd. So when i got my results, she was very humble and was pleased for me to explain to her what my CAG count meant. I came right out and asked her, if she would like me to contact the hd socoial worker at ubc, and have the physicians guide to hd mailed out to her, and she was like, oh yes, that would be excellent. So it was mailed out to her, and she was glad to get it. I think every patient with a new hd diagnosis, that hd clinics should contact the family doctor, and ask if they can mail that book out to them, so they can take better care of their hd patient. Here where i go at ubc, the neurologist and hd psychiatrist do not leave the family doctor out of the loop, but try to send them detailed reports about each visit. They try and keep the family doctor as the primary doctor, and my doctor is always happy to have their expert advice.

In my family's experience the one thing that hurt the most was when my brother was living in a nursing home, his behavior was not easy for the staff to contend with. So he was transferred from that nursing home to one which was not in our city. In fact he went out of our state, like 800 miles away. Since the rest of the family was either older or suffering from early HD none of us could visit him. He died without any of us able to help him. I think it would be important to have places for HD patients so they can stay near home. What would solve that problem, I don't know.

medmo.. good plan.. I like it. Especially the networking of families. I don't know how much HD is in NC but even with a social worker.. one person's time can quickly get taken up. I always felt a buddy network would be a good thing to have for those times when formal groups are a little too structured.. and people just want to talk it out a little bit. No answers particularly but just help by being able to chat freely like you can't with ordinary friends.

Alice I think that problem can be helped. 800 miles away is too far. It may have solved the problem of appropriate care for him but didn't help for your family if you can't be one. In my dreams I would like to see 75% of people no farther away than a day trip from a family member. Some places are too far away from nearly everything and having an HD facility for them and won't happen.. as in deep Wyoming or Montana. I do think existing facilities can offer care to HD residents with support, Especially getting off the ground with it. Our social worker helps support where my wife is. They are handling 15 HD residents very well. It's a very modest place... but well done. The COE is an hour away.. it works closely also with the home and is a required visit for residents and can always be consulted. Anyone in the state can reach the place in a day trip or less. Several of the residents have come by way of other places that say they couldn't handle the person. I haven't seen one yet that wasn't manageable overall. The staff expects bad days with any given person .. but that what they are there for..to handle it. And they can and do. No one has left the place with HD yet. I have suggested that what Leo Rafail has done here could be done elsewhere and suggested that the Natl. HDSA look at it and see if they can facilitate the same elsewhere. I hope they speak with him and use his work in some form elsewhere.

Thanks everyone for your input. What great responses. I will share them all with my group. It seems to me that you want doctors to talk with one another and arrive at some consensus, and that primary care or community providers are an important part of the "care team" who need to be involved. COEs can model, but can't do the whole job.

Tim, I think your idea about "professional fear" was stated in a way I have tried to express in the past, but didn't quite find the words for it. As a person at risk in my twenties, I think I soaked up the fear of the doctors I talked with, and I talked with several. It was "why do you want to talk to other HD families? You're just inspiring false hope"...meaning of course there was no hope for me. But I didn't have symptoms or know if I ever would at that point. The only conclusion I could draw was they were afraid of engaging with me because they were afraid I would get HD and they'd then watch me suffer...too close to home, being a physician, it made it too real for them somehow. Or that they were jerks, which I really didn't want to believe about my profession.

In medical school, as my professor talked about HD, he told my class that he was pretty certain Arlo Guthrie had HD, which was blatantly untrue. My professor simply couldn't deal with the fact that no one knew or could predict (at that time) if Arlo had the HD gene or not, so he had to make it a certainty. I never understood that, how someone who was so well educated simply didn't get it that the numbers and how to live with the numbers was just plain hard, there were no shortcuts or conclusions that made it easier.

All of this served to silence me, at a time in my life I deeply needed encouragement and wisdom.

When I returned to train in Psychiatry, almost 20 years later, I watched a resident give a presentation on an HD patient and was astounded by how much opinion and judgement he injected into his presentation; I really wasn't expecting, after all this time, that a physician's emotional reaction to HD could still be so powerfully negative. I know that health care professionals care for patients and families in crisis, which skews their view of how bad it is, they don't see all the days HD families spend not in crisis, at birthdays parties and first days of school, and family picnics, the stuff of every day life. So I've learned to forgive them their bias, but I think it's really important for me to speak up and point out that fear and hopelessness is harmful. It's in our hands as physicians to provide leadership and the greatest medicine of all, hope. It's our job.

Not telling someone their CAG repeat number simply implies he can't handle it - how frightening! - it disempowers an individual who needs more than anything to be told he CAN manage his illness...he MUST manage things you and I take entirely for granted, that he MUST manage his emotions as long as he can, so he will have the power to live life in every healthy moment. HD patients don't have the luxury of giving up.

It's nice to meet another health care provider who lives in an HD family. I agree that nothing has influenced my professional life as much as caring for my Dad and brother, or being at risk and going through testing. For that, I am deeply grateful.

It is also wonderful to hear from people who are willing to share their thoughts about how we can do better. And I know we can.

With love and hope,
Medmo

Hello and Welcome
I have so much gratitude for caregivers of HD and the professional care that we do have. So thank you for helping. Also that is great that you beat the odds. You don't have to live with that what if anymore. I do believe there has to be more training. More awareness and education.

I can't think of anything to add, but did want to welcome you to the forum.

Patty

Wow, I really could relate to your thoughts and appreciate your sharing.

Margie
pHD

I loved the NC support group! Such a welcoming and engaging group of folks.

If you have chocolate milk in your waiting room, could you have chocolate soy milk there too?

~ Katie