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Old 18-03-18, 05:20 PM   #1
jaq
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Default Huntington’s nurses

What are huntingtons nurses dare they only available in some areas ?
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Old 19-03-18, 12:24 AM   #2
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Default Huntington’s Nurses - where are they?

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Hi Jaq

It’s interesting because there’s nothing much in the literature about Huntington’s Nurses. The main contacts I can suggest are Aimee Aubeeluck and Eleanor Wilson at Nottingham:

Knowledge in practice: the specialist nurse role in Huntington's disease 2016 (Abstract)

Applying a healthcare model to Huntington's disease: the key worker approach.
Wilson, Eleanor and Aubeeluck, Aimee and Pollock, Kristian (2014) British Journal of Neuroscience Nursing, 10 (5). pp. 214-218.

I wonder whether people are referring to Nurses at places like St. Andrews, Northampton. This is how Sarah describes her role as a qualified nurse within the HD service at St. Andrews:

“Working with patients with a diagnosis of HD has given me satisfaction that I have never felt before, and the uniqueness of my patients has given me something to look forward to in a job. The strength of the team and the welcoming and the atmosphere of the environment have taken away the fear and that I have always overheard about the risks associated with HD patients. I have observed and have been involved in giving care that I would want for myself and my loved ones. For a person who was naive at first due lack of experience in working with specialist HD patients, I am glad and grateful for the opportunity that I was given to work with people diagnosed with Huntington’s disease, and I am loving it.”

I also came across this American view: Highlighting Huntington disease

Nursing specialty

"Patients with Huntington disease have unique care requirements, highlighting the importance of nurses with specialized knowledge about the disorder. Specialist nurses have disease-, service-, and person-specific knowledge, enabling them to provide more appropriate and effective patient care.

Research has shown that Huntington disease specialist nurses reduce hospital admissions by more than 50%, decrease the length of hospital stays by nearly half, and improve care quality in both inpatient and outpatient settings. In addition to keeping these patients healthier for longer, nurse specialists are also able to more effectively advocate for their patients.

These nurses typically spend a great deal of time with patients and their families, building a strong rapport and improving continuity. The nurse specialist is responsible for developing a detailed care plan and can provide beneficial education for patients, families, and other healthcare providers. More research needs to be conducted on the benefits and roles of the Huntington disease nurse specialist. If this is an area of interest to you, encourage your facility to consider the option."

You’ll also find that a great number of UK general care homes list Huntington’s Disease as one of their specialities - when it often isn’t the case (FACT). I suspect the HDA can support this view by the fact that much professional training needs to be done with care home staff - who are not usually professionally qualified nurses.

I've only come across the term "Huntington's Nurses" on social media HD groups - which is where everyone seems to be discussing HD trials, tribulations and solutions these days ... maybe they're referring to SHDA's.

I'm also surprised that in these groups very few people seem to be aware of the presence of the Huntington's Disease Association.

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Old 20-03-18, 12:38 AM   #3
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Default Re: Huntington’s nurses

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Originally Posted by jaq View Post
What are huntingtons nurses dare they only available in some areas ?
Hi Jaq

Not sure if this is what you may be referring to?
If you look under the heading 'news' on this Hda website, there is an item that refers to a specialist nurse coordinator being appointed in Bedfordshire.... covering rare neurological conditions... so this would cover motor neurone disease, etc. as well as HD.
There had also been someone in a similar post appointed in Hertfordshire at some point.
You might have to search a bit for the item to appear, but I believe it came under the heading of press releases?
Even if this is not what you were thinking of, it is worth a read.... as it is such a positive appointment to have been implemented.

Best wishes
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Old 20-03-18, 06:10 PM   #4
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Default Re: Huntington’s nurses

Hi

Yes that kind of think I think there are Parkinson’s nurses etc but not many Huntington’s nurses maybe that postcode lottery again .

Can’t wirk out to search on the web site at all



Thanks x
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Old 20-03-18, 06:31 PM   #5
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Default Re: Huntington’s nurses

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Originally Posted by jaq View Post
Hi

Yes that kind of think I think there are Parkinson’s nurses etc but not many Huntington’s nurses maybe that postcode lottery again .

Can’t wirk out to search on the web site at all



Thanks x
This is really 'long winded'...so sorry if I confuse you!...Probably an easier way...but I found it by going to home page....at top of page where we are on message board....when in to home page click on symbol top right... the list will come up and click on 'news'...and then under 'news article's...item 2..at the bottom of page.dated 31St March 2017

Stop laughing at the back...Allan! It's the best I can do! Know there is a simpler way Jaq....but don't know how!!... Hope you find it!
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Old 20-03-18, 10:43 PM   #6
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Default Re: Huntington’s nurses

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Originally Posted by Crystal View Post
Stop laughing at the back...Allan! It's the best I can do! Know there is a simpler way Jaq....but don't know how!!... Hope you find it!
I'm definitely not laughing - it's like being in a maze and they've blocked every possible exit (solution).

I know it's all hidden in there somewhere, so I did the obvious - a google search, et voilà!

https://www.hda.org.uk/news/specialist-nurse-for-neurological-conditions-appointed-in-bedfordshire

There are no HD Nurses in the UK (I think I'm right there) but there are a few Rare Disease Specialist Nurses dotted around the country, mainly MND I think.

I can't fathom out why the "webmasters" haven't resolved the lack of a search facility on the main website. We shouldn't have to spend ages trawling through web pages to find what we're looking for. It's all well and good having all those headlines and titles - but there's no index so it's almost impossible to find important old or archived items.

That's an A* to Crystal.

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Old 21-03-18, 07:18 AM   #7
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Default Re: Huntington’s nurses

Quote:
Originally Posted by Allan View Post
I'm definitely not laughing - it's like being in a maze and they've blocked every possible exit (solution).

I know it's all hidden in there somewhere, so I did the obvious - a google search, et voilà!

https://www.hda.org.uk/news/specialist-nurse-for-neurological-conditions-appointed-in-bedfordshire

There are no HD Nurses in the UK (I think I'm right there) but there are a few Rare Disease Specialist Nurses dotted around the country, mainly MND I think.

I can't fathom out why the "webmasters" haven't resolved the lack of a search facility on the main website. We shouldn't have to spend ages trawling through web pages to find what we're looking for. It's all well and good having all those headlines and titles - but there's no index so it's almost impossible to find important old or archived items.

That's an A* to Crystal.

.

It's a good job the HDA website is not needed by people with declining mental and cognitive function; or deteriorating motor function and dexterity; or patience issues; or time management; or short attention span; or for carers with limited time and urgent need patients; or other neurological/emotional/physical/resource limited (time is a resource) or stressor isues. That's all I can say

Urine taking aside (all be it with a serious message to support Allan's point that the website is not the most user friendly) I was thinking how Threads like this would really have been helped by a response from someone in the HDA to clarify is such nurses do, or do not, exist in England and Wales.

That said, have you tried asking your SHDA direct Jaq? If she/he is classed in circles as a mythical HD Nurse then surely there is something for the HDA to address in telling people that (media here and those who refer to 'Nurse') there is a fundamental difference between someone being all things to everyone and a dedicated HD Nurse/health nursing practitioner assigned with nursing qualifications and HD specialism and all the NHS resources that would stream into
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Old 21-03-18, 12:47 PM   #8
Crystal
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Default Re: Huntington’s nurses

Quote:
Originally Posted by Allan View Post
I'm definitely not laughing - it's like being in a maze and they've blocked every possible exit (solution).

I know it's all hidden in there somewhere, so I did the obvious - a google search, et voilà!

https://www.hda.org.uk/news/specialist-nurse-for-neurological-conditions-appointed-in-bedfordshire

There are no HD Nurses in the UK (I think I'm right there) but there are a few Rare Disease Specialist Nurses dotted around the country, mainly MND I think.

I can't fathom out why the "webmasters" haven't resolved the lack of a search facility on the main website. We shouldn't have to spend ages trawling through web pages to find what we're looking for. It's all well and good having all those headlines and titles - but there's no index so it's almost impossible to find important old or archived items.

That's an A* to Crystal.

.

Thank-you Allan.....I think that A* was very generous, seeing that I didn't think to do a Google search! Should have been marked down for that, but because I don't get many 'stars' for anything anymore... It's gratefully received! Little confession here....sort of knew where I had seen it posted originally....but still wasn't obvious and and lack of search facility doesn't help...apart from Google!...... Funding for this post maybe coming to an end....will be interesting to see whether it's continued... will keep you posted!
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Old 21-03-18, 12:58 PM   #9
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Default Re: Huntington’s nurses

Quote:
Originally Posted by Trish View Post
It's a good job the HDA website is not needed by people with declining mental and cognitive function; or deteriorating motor function and dexterity; or patience issues; or time management; or short attention span; or for carers with limited time and urgent need patients; or other neurological/emotional/physical/resource limited (time is a resource) or stressor isues. That's all I can say

Urine taking aside (all be it with a serious message to support Allan's point that the website is not the most user friendly) I was thinking how Threads like this would really have been helped by a response from someone in the HDA to clarify is such nurses do, or do not, exist in England and Wales.

That said, have you tried asking your SHDA direct Jaq? If she/he is classed in circles as a mythical HD Nurse then surely there is something for the HDA to address in telling people that (media here and those who refer to 'Nurse') there is a fundamental difference between someone being all things to everyone and a dedicated HD Nurse/health nursing practitioner assigned with nursing qualifications and HD specialism and all the NHS resources that would stream into

Spot on Trish, but you forgot to add 'elderly people' to your list! Just a little joke I'd better add...don't wish to offend anyone who thinks they may be in this category.... but I'm a bit 'techhy challenged' at times!! Don't often think outside the Mb! In years to come the great grandchildren will be asking 'whats a 'google search'!.....and who knows, they may even ask 'what WAS HD'!?
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Old 22-03-18, 11:21 PM   #10
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Default Re: Huntington’s nurses

There are admiral nurses for demtia and McMillan
Nurses of course .

Yes for one on the most complex diseases known there is an ad hoc hitch potch approach .
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