Information: where would you like it?

[NeverGiveUp]

The information packs are a good idea, a few years back I did a research project about information for the disabled, the conclusion was that an info pack was ideal. What came out of the project was that the info supplied to many at that time wasn't up to date. When disabled people started to tell me they had no real info but providers said they sent out lots of leaflets, i asked them to send me a pack of what they sent out. The results were interesting, I looked at the publication dates on the backs, most were out of date, some were very many years out of date, no-one had thought to check their leaflet stock.

I was also involved in marketing services for carers, the course content was "we've got funding, what can we find for them to do?" Serious amounts of info was sent out, i sent to GP, libraries, nhs facilities, anywhere carers might visit. A large launch event where a lot of carers ate a huge amount of free sandwiches At the end of the day, after several thousand leaflets/info packs went out, there was one applicant. I did a follow up and found out that GP surgeries have huge amounts of info arriving every day and most just goes in the bin, some GPs gave the leaflets to carers as they visited, the carers weren't impressed. The general message was that the contents wasn't of any interest, it was prescribed, the whole excercise must have cost a fortune and none of the funding 'for carers' was of any use to them - apart from the sandwiches

Since that time I have moved to the other side of the fence, our GP surgery nurse seemed to have the job of pushing Caring With Confidence courses, i had no interest whatsoever in it, if someone had offered me a a free course for something which did not have anything to do with being a carer I would have jumped at it. Every time I set foot in the surgery, there she was rushing up to me grasping a leaflet, I was being advertised as 'a carer', thoughts of The Prisoner went through my mind - I am a name not a number. It felt like one of those little annoying dogs which try to do 'things' to your leg , the audience found it amusing I didn't. I eventualy crept into reception, whispered what I wanted, if she saw me I ran

If I had my choice of what I want it would be an info pack with real info of practical use, placed somewhere where i can ask about it. I would like that pack to contain a book list to give me the chance of further reading, I would want a list of where I can obtain things in an emergency (like jumbo sized continence pads, try dealing with a poo-ing dementia person and trying to locate supplies not stocked in Boots). I would not want the text to be patronising, i bin anything which suggests that I should look after myself by going to the hairdressers or out for a meal - CA is less than £60/week. I also bin things which tell me that if I ask neighbours and relatives that i need help they will immediately rally round, they don't If there is anywhere which is dementia friendly or gives discounts i would love a leaflet with that info, dementia friendly shops which stock clothes that are generous sized (think continence pads) but are still wearable.

While these things are not dementia specific they are all of vital importance, dementia takes over a family's life, adjustment is Hell, that adjustment is as important as the illness if any semblance of a life is to be maintained.

I tend to look for info in sainsbury's, tesco etc, also waiting to pick up prescriptions in pharmacies. I have no connection with anything else, no time, as a 24/7 carer I leave the house only a couple of hours a week to go to the supermarket, we don't have SW or contact with any other organisation, I wouldn't see your leaflets. I suspect that I am not alone in this. The internet is pretty much my only contact with the outside world.

 

[Tender Face]

Jje – this is an alarming statement:

I currently work for the society and I am trying to reach out to people with dementia and their family and friends to help them access any support they may like.

However uptake is very slow.

What is the remit of the job you are employed to do by the Society and have you fed back the ‘slow uptake’ to them? When so many services have been cut – it’s bewildering an employee of the society is asking such a question!!!!!!??????

Are you are aware of the Tesco partnership and how its roadshows were meant to reach out to communities? Is there something you can build on from that?
Are you saying there are services and staff and professionals/volunteers available but people are not attending??????

I’m with 2jays here – GP surgery was the last place my mother would have wanted to go – or admit she was there with ‘memory concerns’ ... local businesses/supermarkets .... places carers might access to prompt them to get (their loved ones) to a GP surgery at all ...... and from that acorn ......

Best of luck, Karen, x

 

[NeverGiveUp]

Tender Face

Tesco roadshows? What and where are they? I shop in Tesco once or twice a week, never seen any mention of them. Would have caught my eye if anything dementia related was around. I suppose it could have been during the day, us people on carers allowance head to the store late for marked down food, things which are interesting seem to happen early in the day and target those who don't target the mark downs How do Tescos advertise these roadshows?

Would be interesting to know exactly what is being ofered by Jge? Do people actually want the service? if it is something like Indian Head Massage or similar, there might be a limited supply of people interested, For me the difficulty is actually getting out of home, to leave home it has to be something seriously useful to me, for years I have wanted to attend professional level psychology of dementia sessions - what do we get - a dementia cafe where all the carers and their dementia sufferers can met to have a chat, I want to know about cutting edge research, no disrespect to other carers but one size does not fit all.

 

[Chemmy]

GP surgery was the last place my mother would have wanted to go – or admit she was there with ‘memory concerns’ ...

It might be the last place your mother would have gone - but it was the first place my father, and later I, went, when we realised what was happening to mum. The GP is the front-line health professional and needs to take responsibility and lead from the front; I know Dad and I were in a state of denial at the beginning and would have benefited from some practical guidance.

If approached, the GP should have all the local relevant contact information ready to pass on - not just for dementia; this needs to be done for Parkinsons, cancer, stroke patients, etc too.

I'm not suggesting that's the only point of contact, but it is an essential one.

 

[Tender Face]

I agree, Chemmy – as I also agree with NeverGiveUp’s comment that one size does not fit all and therefore it is helpful to think of other alternatives and avenues other than what may be obvious to some but absolutely discounted for others?

Here’s the AS website link to the Dementia Community Roadshow:
http://www.alzheimers-tesco.org.uk/dementia_community_roadshow from which

: It aims to reach 100,000 people over the next three years, providing information and advice to anyone with questions about dementia, or those who are worried about their memory.


And

Since launching in June the Roadshow vehicles have already visited over 50 Tesco stores, provided advice to more than 2,000 people and handed out over 15,000 pieces of information. (I assume that is June 2011 and the AS website page has not been updated to reflect the project has been running over a year now?)

There is still a link on the page to request a roadshow be allocated a ‘slot’ locally ... and wondered that might be helpful to jje in her (I am assuming ‘Jo’ is female?) current role, as in theory the project runs until 2014 and surely as it is backed by AS and she is an AS employee (whether paid or unpaid) there could be a bit of joined up thinking to be had here between different projects which would benefit those AS are seeking to support at local levels?

Jje – I have also seen in my own local area so many dementia projects being closed down (e.g. my local AgeUK have removed several services which included provision to support people with early onset dementia, advocacy, befriending etc etc ) and can now only try to ‘refer on’ to other relevant agencies who may not be dementia specific. I don’t know what the confines of your role are with AS of course – and how partnerships are formed at local or national level between charities or other NFP organisations ..... but wonder if it is another opportunity to reach out to people to network with other (perhaps smaller and independent) charities who operate locally? You may be the one providing the resource for a gap they can only signpost to if and when they are approached?

I do hope that helps,

Karen, x

 

[CINDYJANE]

I knew about the Society through general press/TV etc, but found it too impersonal to approach for quite some time after my mother was diagnosed with dementia about 2 years ago.
A more "local" contact with "real" people would be most helpful. Contacting a large national organisation seems so distant and unhelpful when you have personal issues to address. To know your "local contact" would be ideal.

 

[Skye]

Jje – I have also seen in my own local area so many dementia projects being closed down (e.g. my local AgeUK have removed several services which included provision to support people with early onset dementia, advocacy, befriending etc etc ) and can now only try to ‘refer on’ to other relevant agencies who may not be dementia specific. I don’t know what the confines of your role are with AS of course – and how partnerships are formed at local or national level between charities or other NFP organisations ..... but wonder if it is another opportunity to reach out to people to network with other (perhaps smaller and independent) charities who operate locally? You may be the one providing the resource for a gap they can only signpost to if and when they are approached?

I do agree that in these days of financial restraint it is important for charities to work together and pool resources wherever possible. We need all the support we can get, and it is sad to see so many charities having to cut back on the support services they want to provide.

The charity I've been involved with for several years, User and Carer Involvement, is a local one, though that is rather deceptive as D&G is a geographically huge county. But it has close links with the local branches of both Alzheimer Scotland and Carers UK. It is through UCI that the needs of people with mental health problems (not just dementia) are heard by the people who need to hear them.

jje, following our first appointment with the consultant, our details were passed to the Alzheimer Scotland link worker, who immediately rang and made an appointment to visit. She got to know us, and left us with an info pack and her own telephone number. Sadly, her immediate support only lasted for six momths, as her role was to support people following diagnosis, and there were always new people needing her support. But it was invaluable while it lasted.

Regarding info packs, it's difficult to find the right level for these. At first diagnosis, many people don't want to be bombarded with too much information. In fact, if the pack is too big, it can be put away 'to read later', and then forgotten. The important inclusions are phone numbers for local support, the consultant's secretary for emergency use, and links to websites such as TP. People can then access info as they need it.

But I firmly believe that the personal approach is best, wherever possible. People who have been hit by a devastating diadnosis, be it dementia, cancer, or other, need someone to talk to, and a hand to hold.

I hope you find a solution to the lack of uptake, jje, there is a great need out there.

 

[NeverGiveUp]

Skye

I agree 100%, the sum total of what we were told was "it will get worse", a phone call from someone offering a carers support group where "we can all sit round and discuss medication", the mind picture generated by that had me heading for the hills. We still don't know what happend at diagnosis, why were we put in front of a committee of maybe 5 or 6 people? Why did the consultant invite OT and someone who wasn't a registered social worker into the diagnosis process? I have lots of questions about it, everything was a nasty dream, we should have had the opportunity to ask questions when the shock wore off. i would have loved a pack which explained the process, I would still like that.

It is that fundemental lack of useful info that is the worst, cut loose to not only deal with the dementia but to fight the whole system. What I would like is a discrete folder which doesn't atttract mum's attention - no mention of the 'D' word! In it I would like process of diagnosis, contact numbers, as i said before I needed suppliers of continence products etc. Also internet links to organisations, legalities such as 'Best interests' explaination, Human Rights Act etc, an overview in layman's terms of the law. We were frightened (as it happened the chap was right) by a consultant who told us we should be very careful because of the laws in place, he didn't explain what, we found out afterwards he meant officialdom using the laws for 'best interest' (whose?), with that kind of info we would have been prepared. It has been a steep learning curve and we certainly don't know it all now.

If I had a simple folder which I could add to and then remove items it would be superb, I could create this for myself, the problem is time.

 

[Skye]

If I had a simple folder which I could add to and then remove items it would be superb, I could create this for myself, the problem is time.

I think this is an excellent idea. A loose-leaf folder, with the basics given out on diagnosis, with pages to be added as required.

NeverGiveUp, it sounds as if your mum was quite far advanced on diagnosis (sorry, I don't know your story). Not many people need continence advice in the early stages, and this would be where the personal contact would come in, the info would have been added to your folder.

Forgive me if I've got the wrong end of the stick, but have you not been referred to a continence advisor, who would supply pads? I know I never had to pay for John's.

 

[NeverGiveUp]

Skye

The continence problem was Cdiff contracted in Assessment Ward of hospital, broad spectrum antibotics for border line pneaumonia she had two lots of it, re-infected in hospital, got clear for the 2nd time, discharged, hand swelled massively, back to A&E, doctor thought dirty needle used for blood test prior to discharge (retired nursing friend shocked by this diagnosis), more antibiotics, more Cdiff. We didn't know it was potentially fatal so thought we would treat her at home as she was starving on the ward (ward later disbanded, but that is another story). No spare continence products anywhere, begged a few pads from wards but they were running short of supplies , eventually found some at the Health Centre in a store room, The Boots ones didn't hold enough. Continence service has a wait for assessment, Cdiff does not wait. End of story about the pads, need a chapter on Cdiff? i'm an expert

We now have normal wee-ing problems and continence service on board.

Mum still quite savvie after diagnosis of VasD circa 2006, still have conversations although some a bit surreal, she has her moments, usually at night (probably Sundowning). Dad & I are 24/7 carers, he is at home with her all the time I am getting confined to home more and more.

The folder idea came out of a research project that i did some years ago, long before becoming carer, my life now validates my research all those years ago.

An idea goes through my mind as I write this. Would AS make up a professional looking template/s which could be printed out and go in a slim ring binder? That template could be personalised with local contacts and spaces for local info to be added as obtained plus all the personal details & contacts. The template could either be downloaded or if local reps AS made contact give out template plus the info leaflets to fit in, if there was funding then a smart plain-ish file, (we don't discuss mum's illness with her - she is just what she is). Why I say a template is that the folder could be quickly accessible to not only carer but ambulance crew (we are an expert at calling them as well!). If dementia people all had something similar then info would be there with no searching. Could add pages as things progress, not only meds but maybe personal stuff, when person is gone it could be kept.

Any thoughts?

 

[Skye]

Skye

The continence problem was Cdiff contracted in Assessment Ward of hospital, broad spectrum antibotics for border line pneaumonia she had two lots of it, re-infected in hospital, got clear for the 2nd time, discharged, hand swelled massively, back to A&E, doctor thought dirty needle used for blood test prior to discharge (retired nursing friend shocked by this diagnosis), more antibiotics, more Cdiff. We didn't know it was potentially fatal so thought we would treat her at home as she was starving on the ward (ward later disbanded, but that is another story). No spare continence products anywhere, begged a few pads from wards but they were running short of supplies , eventually found some at the Health Centre in a store room, The Boots ones didn't hold enough. Continence service has a wait for assessment, Cdiff does not wait. End of story about the pads, need a chapter on Cdiff? i'm an expert

That's absolutely horrific. I'm so sorry you and your mum had to go through all that. I'm glad your mum is a bit more stable now - at least, as stable as is possible with dementia.

An idea goes through my mind as I write this. Would AS make up a professional looking template/s which could be printed out and go in a slim ring binder? That template could be personalised with local contacts and spaces for local info to be added as obtained plus all the personal details & contacts. The template could either be downloaded or if local reps AS made contact give out template plus the info leaflets to fit in, if there was funding then a smart plain-ish file, (we don't discuss mum's illness with her - she is just what she is). Why I say a template is that the folder could be quickly accessible to not only carer but ambulance crew (we are an expert at calling them as well!). If dementia people all had something similar then info would be there with no searching. Could add pages as things progress, not only meds but maybe personal stuff, when person is gone it could be kept.

Any thoughts?

Thoughts, yes! I mentioned that I was involved with a charity; I was their representative on a panel devising integrated care pathways for our area. We actually designed the folder you describe, with exactly those templates. I don't know to what extent it's in use, the panel was disbanded when the powers that be decided all points had been covered, though I had severe reservations about that. I really hope we achieved something, and that it's being carried through.

 

[NeverGiveUp]

Skye

You made me laugh, 'a bit more stable', Cdiff leaves your floor more like a kennel! When you've dealt with that sort of thing your humour gets decidedly lavatorial

I can't see why that sort of folder isn't there for all, all different depts have their own records, it's like Pass the Parcel, everyone asking for the same info and then it goes missing. I have started a 'they suffer from' and 'there medication is' printout to hand to who ever, it gets so difficult to remember everything in an emergency, just hand the person a print out.

The ring binder could have a diary section to log when the person went to GP, hospital etc.

It would be tragic if the folder idea in Sco.tland had been abandoned