Not feeling very good about matters

[al.b]

Hi All

I have only written a few threads on this forum before. I have early onset Alzheimer's for nearly 2 years now and I am still shocked at the lack of support from anyone. Living on my own brings further worries as there is no one to monitor my condition at all. My family are Text carers(sorry new name for families who think text contact is great!) I have also found it hard to extract patients from carers from the "I have dementia" section, not that I have anything bad to say about carers, I was one to my late wife for 2 years, but I am sorry my pathway is not the same as yours! I am as active as I can be and have done my best to raise awareness of this terrible disease and help in anyway I can to get the message across to the experts.." Don't develop services without us?" I know some health services do invite patients and carers onto forums including the Alzheimer's society but in my experience in Lancashire all I hear is :we are developing services etc to meet the future needs for patients". I'm sorry but unless I have been asleep I see no service development, media coverage other than a new local hospital for patients being built without the people affected at the heart of planning. I have just been told today that despite seeing my doctor about my mobility last week, I must contact Occupational therapy and self asses myself (new system)and then ask them for a referral. Did I miss something or what, this is health D.I.Y. Im sorry to sound off, but my situation is being so aggravated by the not so" Dementia Friendly" communities which seems to be a good buzzword for organisations at the moment, will it happen, yes in about 100 years or so. I always wish my fellow patients and there carers good luck, keep fighting for change, I am, until I am finished .Alex

 

[Sue J]

Hi al.b

I echo your sentiments entirely. I first presented over 4 years ago, still have no diagnosis and no help. DIY sums it up completely. I have more help from CAB & TP than the medical and healthcare profession and the government company ATOS only helped to exacerbate my symptoms. I tried self referral to SS who wouldn't help because I was under the local CMHT, who withdrew help because I needed 'specialist services' of which there aren't any in my local area. So CMHT take you off their lists and you become 'invisible' and your needs become greater but the powers that be refuse to recognize that you exist by removing you from their lists. I am horrified by the absence of care and those that are suffering severly mentally I have frequently seen come out of hospital worse than when they went in.

I am still fighting and pressure must be put on our government to start meeting some of our needs. I wish all the best and sorry you are battling this without support and hope that you get some soon. If you are over 50 you can get Age UK to support you in a referral, CAB referred me to them so that someone could help with my benefit renewal forms without which I don't know where I'd be.
Take care and keep posting
Sue

 

[CeliaW]

Hello Al b - sorry to hear how you feel and it must be very frustrating. I wonder if you have come across one of the Forum members Norrms McNamara? He has Lewy Bodies Dementia and has been doing a lot of work to influence change and raise awareness and I am sure would be pleased to be in contact with you and let you know of his involvement.

There are various ways to contact him including via TP -

http://forum.alzheimers.org.uk/showthread.php?57388-New-website-called-The-Purple-Angel

https://www.facebook.com

/norm.mac1

http://tdaa.co.uk/

Hope you manage to catch up with him and find out what he is doing and that it helps how you feel, maybe you might even wish to be involved as, although one of the links is to the Torbay Dementia Alliance - that is the first one but he has supported and encouraged many groups around the country.


Best wishes,

Celia

 

[Sallyanne59]

Hi Alex, sorry to hear about your total lack of support .i to have early Alzheimer's (53 years) but I have to say my local professionals have been great so far ! In some areas it would seem that the NHS system is not fit for purpose in some matters , but do contact CAB they are great . I have joined various networks and am going to the Alzheimer's conference in two weeks.One way to find out what's going on with research etc.I know it's hard , but being a sufferer I can say it -stay strong don't let it win !! Take care Sallyanne xxx

 

[stanleypj]

Hi al.b,

I can fully understand your frustration. It's frustrating enough, as a carer, trying to get an appropriate response and action from some of the agencies.

I admire you, Sue J, Sallyanne59 and all the other people with dementia who post on these forums. We can only imagine how things must be for the thousands of people with dementia out there who are unable to fight their own battles, for whatever reason, and have no family or friends or, possibly worse in a way, no support from family or friends.

Keep fighting and keep posting.

Good luck

 

[al.b]

Thanks for your kind replies

Thanks to everyone who replied to my post. Yet another run in this time with " self referral" for occupational therapy!! Has the world gone bonkers, and a recent application for the new P.i.P claim. First your assessed over the phone,get this, before they will send you an application. 2. Next a 36 page life history, so can you cut vegetables? If so how small? I also have chronic and widespread OA.as well as AS. I have had some help from age concern luckily but I must admit this is more like Do Not Claim for PIP as we will turn you down application. We started in April and haven't even got to interview stages yet! I am not against trying to route out false claimants at all but believe me 99% of the questions are designed to trip you up!! Do you remember to get dressed? If I can't do that the game is over anyway, I will keep you all posted as I go along,and along, and along. Thank you.

 

[Sue J]

Thanks to everyone who replied to my post. Yet another run in this time with " self referral" for occupational therapy!! Has the world gone bonkers, and a recent application for the new P.i.P claim. First your assessed over the phone,get this, before they will send you an application. 2. Next a 36 page life history, so can you cut vegetables? If so how small? I also have chronic and widespread OA.as well as AS. I have had some help from age concern luckily but I must admit this is more like Do Not Claim for PIP as we will turn you down application. We started in April and haven't even got to interview stages yet! I am not against trying to route out false claimants at all but believe me 99% of the questions are designed to trip you up!! Do you remember to get dressed? If I can't do that the game is over anyway, I will keep you all posted as I go along,and along, and along. Thank you.

Hi al. b

Yes the world has gone bonkers This is unfair that you have to go through this but it's good you have age concern help. I remember to get dressed but forget how to! If I could get dressed OK most days I'd be pleased to go out of the door in my dressing gown, I think I'd find that preferable If it's any consolation my attempt at vegetables Julienne! wouldn't be very good either I've got this to come later this year so I'll brace myself.

I hope you get some OT help and that it might trigger other things that you need too.
Take care
Sue

 

[al.b]

Thank you

Hi Sue

Thanks for your reply. I will keep posting up my progress as I feel it may help others that come behind me.take care.

Alex x