• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Carers reps


Registered User
May 20, 2003
? postcode lottery for hip protectors ?

Interesting to hear Bruce say that Jan has hip protectors provided free of charge - as far as I know they are not in North Somerset - Is this something we carers & former carers should be flaggging up at all the vairous Forums being set up - for "service users and carers" to have their say in all areas of Health & Social services ??
{See thread http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?threadid=671}

Anyone else out there acting as a Carers Representative ? I know most current carers wouldnt have energy or time for this - but some people find it is a release for all the pent up knowledge & emotion once caring comes to an end or when the person they care for moves into a care home. For me - putting the awful experiences to work is somehow quelling the pain of the memories full of suffering that both my parents went through. I suppose I'm also trying to make some good come out of it - hope that doesnt sound trite. (if thats the right word !!!).

Carers Reps all over the country are needing to collect the views of carers on all aspects of health & social care services - but finding the means to do that is proving tricky. As thsi is a public forum I dont see why some of the postings cant be used - cut and pasted into emails or docs - HELP NADA please - would it be OK to do that?

If any professionals want to know more about what life is like for cares and those 'unmet needs' they harp on about - reading this Forum would be very informative for them.


Registered User
Jul 9, 2003

The NHS is so full of jargon. I read the other day that there are over 600 regularly used acronyms in the NHS. It is no wonder we all find it so difficult to find out what we need to know.

Anyway, I thought I should explain what PPI Forums are (I think this may be partly what Chris is referring to when she talks about carer representatives).

Each trust in England has a patient and public involvement forum. That means that every trust which commissions services (primary care trusts and care trusts) and every trust that delivers services (hospital trusts, ambulance trusts, mental health trusts), has a forum.

Sounds like a shocking amount of bureaucracy doesn't it? But the purpose is actually a good one. It is to allow local people to scrutinise local healthcare provision and to question NHS managers.

If people are interested in getting involved there is more information at www.cppih.org or there is a briefing about the PPI forums on the Alzheimer's Society website in the campaigns section.

Best wishes


Registered User
Dec 11, 2003
Tully, Qld, Australia
Dear Andrew and Chris

Many thanks for the information. I am quite happy for others to approach me about further details at any time.

Will check out the website too.

Best wishes,



Registered User
May 20, 2003
Carers Representation

Thanks Andrew for explaining the PPIs.

For anyone interested - I started out as a Carers Representative quite a while before the PPIs came in (even now these are only just getting off the ground down here). The Mental health Partnership here wanted a carer or former carer on the Older People Mental Health Trust Task Group. (By the way in this area Health and Social Serivices have combined - but only in the delivery of Mental Health services for older people, adults are still served by separate Health & SS . In Somerset, the next county I believe Health & SS have come together totally to form a Care Trust - and this will be the case everywhere eventually. - there will be confusion as we already have "Primay Care Trusts" who oversee all of Health Care ..... Ughhhhhh!

Being a Carer Rep on the Task Group has been the most enjoyable of all the Carer repping so far - mainly as it has led to more than sitting in on meetings. I've helped to design a Protocol for diagnosis of dementia in primary care, met with architects & care home providers discussing care home and resource centre design, assisted in reviewing day services etc etc Extensive networking over the last 10 years has also led to invitations such as attending a Dementia Traiing Day for Care Home Inspectors as a panel member giving a relatives view on quality of life in care homes . I could go on & on ..... !!!! Theres so many ways we can put our experiences to good use to help developments go in the best direction.

Friends who are taking part in the new PPI Forums are saying that these look likely to be very effective and service providers are not going to be able to ignore the views of the Forum - so it is worthwhile gettign involved - as time allows - and even if it doesnt - getting to know someone who is - who will listen & take your situation as an example is also really valuable.

HELLO NADA !!! Maybe we could have a special section of this Forum for Carers Reps ???? What does anyone think - all carers could use it to put views that they woudl like the Reps to take forward at an apppropriate moment .


Registered User
May 20, 2003
Correction to "... harp on about

"If any professionals want to know more about what life is like for cares and those 'unmet needs' they harp on about - reading this Forum would be very informative for them"

SORRY about badly written message - just reread it - I didnt meant that carers 'harp on about " unmet needs . I did mean that the professionals do (and I'm always doubtful that all parties have the same definition of 'unmet needs').