Care Opinion website: Hi, This is a... - Pernicious Anaemi...

Pernicious Anaemia Society

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Care Opinion website

Sleepybunny profile image
5 Replies

Hi,

This is a feedback website where people can comment on the care they have received anonymously.

careopinion.org.uk/info/about

I saw it mentioned on B12 Deficiency Info blog page along with a comment that people might want to tell Care Opinion about their B12 injections being stopped.

B12 Deficiency Info website

b12deficiency.info/

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Sleepybunny profile image
Sleepybunny
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5 Replies
wedgewood profile image
wedgewood

Thanks for that ,But I wonder if “ the powers that be “ take any notice of that site . I’m sure that many of us on this forum have tales to tell about their treatment, or non-treatment . . And it does help a bit to unburden oneself . But does this organisation have any more power than say the PAS? I’m becoming so very sceptical since the latest edict about P.A. patients being told that they should take tablets instead of having injections . Such total ignorance from the very people who are supposed to be looking after the health of the nation .

Patients can describe their concerns here anonymously. But thank you for informing us .

helvella profile image
helvella in reply towedgewood

If anyone does take notice, then the "take tablets" issue should be a good one to put in reports about. And there is one:

careopinion.org.uk/773093

Am surprised that their copyright claims 2005 to 2020. They appear not to have achieved the prominence that might have been expected after fifteen years. Perhaps they have been more active in other areas like hospital and care home issues?

fbirder profile image
fbirder in reply towedgewood

Some reviews from Care Opinion are on the NHS websites for some trusts. plymouthhospitals.nhs.uk/pa...

Of course, they're almost certainly selective in their quoting.

helvella profile image
helvella in reply tofbirder

As if on cue, the very next one said: "Horrible experience". :-)

Sleepybunny profile image
Sleepybunny

Hi,

I like to think that anything that draw people's attention to the plight of people with PA and other causes of B12 deficiency is a good thing.

It might not reach the attention of the health authorities but perhaps someone reading a recent post on Care Opinion about PA and B12 deficiency will wonder if they have PA /B12 deficiency or that they know someone who might have it.

I think that one way to change doctors' attitudes/level of knowledge is to help as many patients as possible get the information to get a diagnosis...maybe one day sheer weight of numbers of patients with diagnosed B12 deficiency, including PA will be enough to make doctors take notice.

In the link that helvella posted there is a response from the person's CCG.

There is a comment box "Show Your Support" where you can say whether or not you had the same experience and where you are in the country.

There's another B12 story on Care Opinion about an elderly woman having B12 injections delayed.

careopinion.org.uk/753253

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