Experiences of accessing appropriate services

[sallyG]

Hi,
this is my first visit to the forum. I would like to share some of my experiences of accessing care services for my mother via our local social services department.
My mom, Marion, was diagnosed with Alzheimers in 1998 after several years of declining memory. Mom was a district nurse for 20 years so was well aware of her symptoms. Because she wasso scared of being 'put in a home' she resisted going to see her GP. Only with the introduction of new Anti-dementia drugs did I eventually persuaded her to get a diognosis. I promised mom we would enable her to remain at home and between us(me, dad, my 3 brothers, their wives and other friends and family) we have managed to do this. However, since Christmas mom has deteriorated so rapidly we needed the help of social care services. What a night-mare. Even though I am a social worker, working with Early onset sufferers, I found it extremely difficult to get allocated a social worker let alone appropriate supportive services. At best I was told 'some one would ring me back' (usually 2-3 days later), at worst I was given incorrect, unhelpful information. It was only because I am aware of what someone is entitled to that I stood my ground. What do people do who are not sure of what the can ask for? This really concerns me
What experiences have other people had?
Unfortunately a few weeks ago my dads health had deteriorated so much we have now placed mom in a nursing home. This was one of the most traumatic experiences I have ever had. We live in Wolverhampton but were unable to find a suitable nursing home in our area. I was so distressed after viewing some of the registered homes that I had a breakdown and am off sick from work. Luckily a friend recommended a Nursing home about 12 miles away. They had a vacancy and mom went in straight from respite.
Mom is in the last stage of her illness. She needs assistance with ALL personal, psychological and daily living tasks. Although she is mobile she has no perception of space and walks into things,ie walls, chairs, doors, she sits down unpredictably and before going into care had several falls a week. In order to avoid falls mom is in a reclining chair with a stool under it to stop her trying to get up. She also has frequent TIA's (little strokes). This is just a snap shot of her needs, I could go on for hours. However, out local health authority feel that mom does not meet Continuing health care criteria. As mom and dad sold their house to move into supported accommodation they have over £20000 each and mom has to pay all of her care costs.
We as a family are in the process of appealing and would like to hear from others who have done this, and also from anyone who may have advice or information.
As both a carer and a professional working in this area I am discusted at the way dementia sufferers and their carers are treated. Yes there are some excellent services out there, but they are out weighed by the inadequate services offered by social care agencies.
One last thing, I down-loaded an excellent book published by the Alzheimers society called 'When does the NHS pay for care' which takes you through the whole process 0f appealing.

 

[Norman]

Hi Sally g
Welcome to Talking point
My wife was diagnosed with AD 7 years ago and has been taking Aricept over that period.
Most of your post might have been written by me,but we haven't reached the nursing home stage yet.
I am ex NHS and was disgusted when we needed help, only too find it was not available esily.
I have experienced all the broken promises,the phone calls not returned,and now no allocated social worker.
Like you I can speak for myself but it also worries me what happens to those that can't and do not understand the system.
The treatment of dementia sufferers is sadly lacking and the fact that people are foced to sell their homes,which they have spent a life time working for, in order to pay for care is not the action of a true welfare state.
Post when you wish
Best Wishes
Norman

 

[Nutty Nan]

NHS Services

I suspect availability of services depends a great deal on the area you live in.
What is annoying is the fact that there is so little advice of what route to take in order to find out what is available and what would be suitable and helpful.
I am a fairly down-to-earth and proactive person, and when my husband was diagnosed 5 years ago, I tried to find out as much as possible about AD and what the future might hold for us. Most of the enquiries I made ended in frustration, and it was only a couple of years ago that I found out by accident that one of the key professionals who can usually get things moving in the right direction is a CPN - I didn't even know what a Community Psychiatric Nurse does (I had never needed one until then). Why did neither our GP, nor the District Nurse, nor the Consultant ever mention the CPN???
We now have a lovely CPN who visits every month, monitors the situation, offered me a carers' assessment (nobody had told me about that either), and has often given us very helpful tips, ideas and information - she has also left me with her own contact number, as well as tel numbers in case of an emergency .... I may never need them, but it is reassuring to know they are in my file!

I am currently battling to find out from Social Services what exactly is available. It seems to me that emergencies may well be catered for (though I truly hope we will never have to test that out!!), but there is little in place for gradual introduction of help before things get critical. I am struggling to continue working while caring for my husband, but I cannot judge what might be 'on offer' by way of help and support. During my first meeting with the SS care worker, when I explained our situation, her reply was "why should you have to give up work? you only say this because you are a woman. If you were a man you wouldn't expect to have to give up work. There are all sorts of things we can help you with". Her parting shot was that she couldn't wait to meet my husband ....

I came away from that meeting full of hope and expectation - after a month of waiting for a phone call or letter, I tried to get in touch with the lady, to no avail. I tried several times, mentioned it to the CPN, and after 9 weeks I put pen to paper and enquired politely when I might hear from her. She visited soon afterwards, met hubby, and left asking me to write a Care Plan. Never having seen a Care Plan, let alone written one, I started typing, and promptly sent her background and wishlist extending over several pages. That was 3 weeks ago.

The point I am trying to make is: I am well aware that Social Services are as under-staffed and over-stretched as the NHS and other care agencies. They probably have to deal with a great many emergencies. Most carers don't ask for help until the situation gets pretty critical. If they then have to wait weeks and months before help arrives (assuming they manage to knock on the right door in the first place), they may well end up as emergencies before a moderate care plan can be put into place. A little could often go a very long way, and one of the problems as carer for someone with AD, who cannot fend for himself, is to find the right balance between patience and insistence. If I shout too loud and phone too often, will they get so fed up with me that we will never get a positive response at all?

Hadn't intended to ramble on, and obviously haven't even helped anyone with this, but it is an ongoing dilemma and just adds to the stresses of caring.