Reply From BUPA, What do you think

[Norrms]

A you know i explained in no uncertain terms what i thought about some aspects of the new BUPA dementia guide, this is their reply as promised, what do you think ?

Dear Norms,



Bupa would firstly like to thank you for the constructive feedback you have given on the booklet which is greatly appreciated. Your feedback is particularly timely, as the booklet is currently in circulation however it is being reviewed and improved before being republished.



The booklet covers many issues that are common across all the ages; however unfortunately it is not designed specifically for those with early onset dementia. Bupa appreciate that this is a frustration for you and their in house expert also acknowledge a keen need for more information and support out there for those with early onset dementia. The Head of Bupa’s Comms team has written ‘With regards to our information on the effects of drug therapies, for many people, any positive effect will be for a fairly short period, so we have sought to provide this as our general guidance wishing, above all, not to offer false hope or unjustified expectations. For those who enjoy a better outcome, we are obviously delighted that our generalisations do not apply to all.’ Their in house expert on dementia then went on to say, ‘Since there is not much information out there, we have looked for some information and support materials for you that we think might be perhaps more useful to you’. (Please find their suggested routes below)



‘The Alzheimer's Society has an excellent factsheet (no.440) on 'Younger People with Dementia': http://alzheimers.org.uk/site/scrip...categoryID=200137&documentID=164&pageNumber=1. This factsheet has specific advice as well as links to other support and information websites. Many Alzheimer’s Society local branches provide specialist support for younger people with dementia. If they do not, they can usually advise younger people on local services, and direct them to any specialist services that are available. The Alzheimer's Society website has a dedicated section on younger people with dementia, at alzheimers.org.uk/ypwd. It also hosts an online discussion group called Talking Point, which has a dedicated group for younger people. To join the discussion you can go to http://forum.alzheimers.org.uk/’



Once again, on behalf of Bupa, thank you for your valuable feedback on this booklet and thanks for your continued participation in the community; we feel your perspective as a person with dementia adds a valuable dimension to the community discussions. We hope Bupa’s personal response to you and their suggested links has been helpful. By all means feel free to contact me again at anytime.



I look forward to seeing you again in our community online.



Best Wishes,

 

[jenniferpa]

Nice to know they're promoting TP. To be honest, I am glad they bothered to respond (they might not have done) but it's not much help is it? They still aren't going to put anything about early onset in their literature as far as I can see. In fact, reading it again, I'm not sure they haven't missed the point entirely. Let me read what you wrote to them and I'll be back.

Original thread is here http://forum.alzheimers.org.uk/showthread.php?t=27564&highlight=bupa

 

[jenniferpa]

Well I see they have addressed one of your issues (the length of time someone might expect to gain a benefit from any drugs) and I suppose I can see where they are coming from. They totally blew off the early onset thing though, or so it seems to me. You didn't what them to make it specifically about early onset, you just wanted some recognition that early onset exists.

I'd be inclined to give them 7/10.

 

[Norrms]

Hiya

Thank you Jenifer and i totally agree with all you say, i also think they have missed the point and i also think you are being very genorous about scoring them 7/10, i would have only given then 5/10 LOL LOL LOL Still as you say at least they answered me which is nice, thank you for your input, it is much appreciated, best wishes, Norrms and family xxxxxxxxxxxx

 

[jenniferpa]

Actually I gave them a generous 2 points for getting back to you in a reasonably timely fashion. Otherwise, yes, 5/10 seems accurate.

 

[sunny]

I was quite surprised at the quick reply and they are addressing the issue and obviously with your input the in house expert on dementia has had a wake-up call re: early-onset

I think the only expert is the one that actually has the experience and therefore can relate it to others.

But they are getting on board so that is the main thing and approaching the right people for info.

 

[Norrms]

Thank you

Thank you, it will be iteresting to see if they change anything in he booklet !! xxxxxxxxxxx

 

[Skye]

I'd give them 'foive' too Norrms. (Anyone old enough to get the reference?)

And that includes the two for the prompt reply. They've missed one point and dodged the other.

As for only covering points common to all, in that case, why say that medication only works for a few months? It worked for seven years for John, and though that might be unusual, so might the 'few months'.

And it would have been quite easy to include a short section on young-onset, without making the booklet 'young-onset-specific'. The number of people with young-onset dementia is growing very fast, and it seems short-sighted to ignore it completely.

As for the referral to TP, I haven't read your letter to BUPA, but I'm sure you must have mentioned the work you do for AS and TP. So how could you not have known about the factsheet?

Yes, nice to get a prompt reply, but it does make one wonder why they asked for your opinion in the first place.

Anyway, don't let them discourage you, Norrms. We appreciate you here!

Love,

 

[EmJ]

Hi

Interesting thread!

When my Granny was diagnosed I got the Scottish publication Coping With Dementia A practical handbook for carers.

It writes, "Dementia affects about 2% of people aged 65 to 70, 5%of people aged 70 to 80 and about 20% over 80. Because people are living longer now, there are more people with dementia. It can also affect people in their 40s or 50s or even younger, although this is rarer. This is called early-onset dementia because it affects people at a relatively young age."

As far as I can see in the BUPA booklet, they do not mention early-onset dementia at all which I find quite surprising. I think they will need to review that decision.

With regards to the medication, I think it may be unhelpful to give specific timescales on how long drug treatments may work. Each person is different so it really comes down to the individual person and what works for them.

I am interested to see whether they do change some of the booklet to consider the points raised. Otherwise, what was the point in asking for feedback?!

Take care,
EmJ

 

[Canadian Joanne]

Hi Norrms,
Well, they've missed the point entirely about early onset. It doesn't need to be the main focus but it definitely needs to be addressed. My mother was diagnosed at 64 and so is just within the definition of early onset.

As for the drugs, putting any timeline on the efficacy is very ill-advised, in my opinion. Aricept helped my mother for at least a year and a half. When we switched to Ebixa, we got an additonal 18 to 24 months of good effects. Some people have less, some more. It's impossible, and very foolish, to generalize about this matter.