Post by Stan and Harry's Dad on Sept 6, 2004 7:19:27 GMT -5
The National Institute for Clinical Excellence (nice) haven’t been too nice recently in that they have not included people with learning difficulties in guidelines on Dementia.
Lack of understanding means that many health and care professionals frequently overlook the possibility of dementia in middle-aged people with Down's syndrome, dismissing the distressing symptoms as 'just part of the learning disability'. Many are also unaware of practical strategies to help sufferers get the most out of
Life, and the prescription drugs needed.
BUT!!!!!!! – after some pressure from the DSA in UK:
THIS FROM THE NATIONAL INSTITUTE FOR CLINICAL EXCELLENCE:
“As you may be aware the Institute is about to publish
the final scope for the dementia guideline. NICE
consults on draft versions of documents to ensure that
the views of stakeholders are taken into account
before final documents are published. Following the consultation and
feedback on the draft scope for the dementia guideline the final version
will include special consideration for people with learning disabilities
who have dementia. This change from the draft scope recognises that
there are specific issues faced by this group that require more tailored
recommendations, including those covering diagnosis”
THIS FROM THE DOWN’S SYNDROME ASSOCIATION
The Scope of Guidelines document is STILL not up on
the website [ftp]http://www.nice.org.uk/page.aspx?o=63355[/ftp] but is apparently due up today (MONDAY 6SEP 2004)
Another major victory is that those drawing up the
invitatIons to join the Guideline Development Group
HAD rejected our applications to include someone with
knowledge of our concerns, but rethought their
position late last week so we now have our chief
expert on the Group too.
Excellent result basically.
ORIGINAL DOWN’S SYNDROME ASSN PRESS RELEASE
> The Down's Syndrome Association is challenging
> health
> and care professionals to stop discriminating
> against
> the forty per cent of people with Down's syndrome
> who
> will develop Alzheimer's disease in later life.
>
> Lack of understanding means that many health and
> care professionals
> frequently overlook the possibility of dementia in middle-aged people
> with Down's syndrome, dismissing the distressing
> symptoms as 'just part
> of the learning disability'. Many are also unaware
> of practical
> strategies to help sufferers get the most out of
> life. Others cite the
> lack of dementia diagnosis tools suitable for use in
> people with
> learning disabilities as the reason for delayed
> diagnosis, preventing
> patients from receiving the benefit of existing drug
> treatments which
> are only effective in the earlier stages of the
> condition.
>
> The problem is further compounded by current NICE
> guidelines blocking the prescription of drugs such
> as
> Aricept to anyone not complying with strict criteria
> that do not allow for the co-existence of a learning disability. The
> Down's Syndrome Association has received reports
> that some GPs refuse to
> prescribe, citing the NICE guidelines as the reason
> but suggesting that
> reluctance to spend limited drug budgets on people
> with Down's syndrome
> may be the real
> motivation. The latest developments on new NICE
> guidelines for dementia care acknowledge the problem
> and are set to improve provision for people with
> Down's syndrome, but they are not expected to be
> published until the end of 2006.
>
> Nikki Lewis, whose brother Andrew died from Dementia
> said:
>
> "My battle to have Aricept prescribed for Andrew was
> long and hard. It took many months of perseverance
> before Andrew was finally given the prescription.
> Sadly, as we expected, the medication only sustained
> the improvement for a limited period especially in
> view of the late start to the drug. Nine months
> later
> it was the opinion of the professionals that the
> drug
> was no longer holding back the dementia and the
> Aricept was withdrawn.
>
>
> "Not all carers can be as strong as I was and fight
> every step of the way. We should not have to fight
> to
> receive the same treatment for people with Down's
> syndrome and dementia - it should be an automatic
> right."
>
>
> The urgent need for change is heightened by the
> otherwise welcome rise in the number of people with
> Down's syndrome who are both living longer and
> living
> more independently, creating an even higher future
> demand for dementia care that is already failing
> current users.
>
> Big Lottery Funding has enabled the completion of
> the
> current Cambridge research project carried out by
> Professor Tony Holland and his team and also the
> launch of a new differentiated diagnostic tool now
> available from Cambridge University Press.
>
> This Autumn, the Down's Syndrome Association is
> holding a series of conferences and training
> sessions
> on dementia for professionals and carers, as well as producing new
> information materials on Down's syndrome, ageing and dementia.
> Funding is also being
> sought for ongoing training provision and further
> research into Down's syndrome and Alzheimer's
> disease.
>
>
Lack of understanding means that many health and care professionals frequently overlook the possibility of dementia in middle-aged people with Down's syndrome, dismissing the distressing symptoms as 'just part of the learning disability'. Many are also unaware of practical strategies to help sufferers get the most out of
Life, and the prescription drugs needed.
BUT!!!!!!! – after some pressure from the DSA in UK:
THIS FROM THE NATIONAL INSTITUTE FOR CLINICAL EXCELLENCE:
“As you may be aware the Institute is about to publish
the final scope for the dementia guideline. NICE
consults on draft versions of documents to ensure that
the views of stakeholders are taken into account
before final documents are published. Following the consultation and
feedback on the draft scope for the dementia guideline the final version
will include special consideration for people with learning disabilities
who have dementia. This change from the draft scope recognises that
there are specific issues faced by this group that require more tailored
recommendations, including those covering diagnosis”
THIS FROM THE DOWN’S SYNDROME ASSOCIATION
The Scope of Guidelines document is STILL not up on
the website [ftp]http://www.nice.org.uk/page.aspx?o=63355[/ftp] but is apparently due up today (MONDAY 6SEP 2004)
Another major victory is that those drawing up the
invitatIons to join the Guideline Development Group
HAD rejected our applications to include someone with
knowledge of our concerns, but rethought their
position late last week so we now have our chief
expert on the Group too.
Excellent result basically.
ORIGINAL DOWN’S SYNDROME ASSN PRESS RELEASE
> The Down's Syndrome Association is challenging
> health
> and care professionals to stop discriminating
> against
> the forty per cent of people with Down's syndrome
> who
> will develop Alzheimer's disease in later life.
>
> Lack of understanding means that many health and
> care professionals
> frequently overlook the possibility of dementia in middle-aged people
> with Down's syndrome, dismissing the distressing
> symptoms as 'just part
> of the learning disability'. Many are also unaware
> of practical
> strategies to help sufferers get the most out of
> life. Others cite the
> lack of dementia diagnosis tools suitable for use in
> people with
> learning disabilities as the reason for delayed
> diagnosis, preventing
> patients from receiving the benefit of existing drug
> treatments which
> are only effective in the earlier stages of the
> condition.
>
> The problem is further compounded by current NICE
> guidelines blocking the prescription of drugs such
> as
> Aricept to anyone not complying with strict criteria
> that do not allow for the co-existence of a learning disability. The
> Down's Syndrome Association has received reports
> that some GPs refuse to
> prescribe, citing the NICE guidelines as the reason
> but suggesting that
> reluctance to spend limited drug budgets on people
> with Down's syndrome
> may be the real
> motivation. The latest developments on new NICE
> guidelines for dementia care acknowledge the problem
> and are set to improve provision for people with
> Down's syndrome, but they are not expected to be
> published until the end of 2006.
>
> Nikki Lewis, whose brother Andrew died from Dementia
> said:
>
> "My battle to have Aricept prescribed for Andrew was
> long and hard. It took many months of perseverance
> before Andrew was finally given the prescription.
> Sadly, as we expected, the medication only sustained
> the improvement for a limited period especially in
> view of the late start to the drug. Nine months
> later
> it was the opinion of the professionals that the
> drug
> was no longer holding back the dementia and the
> Aricept was withdrawn.
>
>
> "Not all carers can be as strong as I was and fight
> every step of the way. We should not have to fight
> to
> receive the same treatment for people with Down's
> syndrome and dementia - it should be an automatic
> right."
>
>
> The urgent need for change is heightened by the
> otherwise welcome rise in the number of people with
> Down's syndrome who are both living longer and
> living
> more independently, creating an even higher future
> demand for dementia care that is already failing
> current users.
>
> Big Lottery Funding has enabled the completion of
> the
> current Cambridge research project carried out by
> Professor Tony Holland and his team and also the
> launch of a new differentiated diagnostic tool now
> available from Cambridge University Press.
>
> This Autumn, the Down's Syndrome Association is
> holding a series of conferences and training
> sessions
> on dementia for professionals and carers, as well as producing new
> information materials on Down's syndrome, ageing and dementia.
> Funding is also being
> sought for ongoing training provision and further
> research into Down's syndrome and Alzheimer's
> disease.
>
>