Alzheimer's/Dementia the poor relation in the health service.

[jude1950]

I know we have all had different experiences of getting a diagnosis for our loved ones/relatives. We for example were told during a consultation with a specialist at the memory clinic after a long 2 1/2 year battle on my part to get anyone within the health service to listen to me when I was saying that there was something wrong with Jim.There was no one else in the room and we were told that Jim would need his heart checking before medication could be prescribed (Reminyl) this took another week and we returned to the clinic 2 weeks later to get the first prescription.

That was all ..no leaflets no advice I had to do all the research myself and eventually joined the Alzheimers Society the rest as they say is History.

Compare this experience to Someone that thinks they may have cancer there is a fast track clinic referral and when tests confirm that there is a diagnosis of Cancer The news is given to the patient and relative by the Doctor and two macmillan nurses are in the room as well, before the patient leaves the hospital they have a consultation with the macmillan nurse who tells them about the treatment thay may be having , gives them leaflets about the type of Cancer they have, arranges a follow up visit within the next two days to discuss benefits help fill in forms and give advice about the local hospice The relatives are offered counselling and the macmillan nurse is on call whenever the patient or relative may be feeling ill/stressed.

Not forgetting that any respite at the hospice or day care is free of charge and should the burden of caring become to much the patient goes into a NH at no charge.

For those who may say this only happens to the cancer patients that cannot be cured.... I would say neither can Alzheimers.

I just had to have a rant ...a friend who is a nurse has been working on an oncology clinic and when I asked her what happens if Cancer is diagnosed this is what she told me

rant over.

Judith

 

[Tender Face]

Slow down the bus .....

The news is given to the patient and relative by the Doctor and two macmillan nurses are in the room as well,

This may well be your friend's experience in her oncology clinic ...... this is not always the case - and having sat through 'consultations' with both my husband and subsequently my mother the heart-breaking news is often delivered in a cold, hospital environment with little support ......

arranges a follow up visit within the next two days to discuss benefits help fill in forms and give advice about the local hospice

Yes, there are myriad of forms - and if you hold EPA, have empty properties to think about, looking at shifts in Attendance Allowance as just one example the paperwork is a nightmare on top of the grief ..... if you are lucky you might have a social worker tell you which forms to fill out ....... and tell you who to ring to get them .....

Hospices are not necessarily places for the terminally ill but 'assessment centres' for people with life-threatening illnesses (of which you could argue dementia is one of them) .....

The relatives are offered counselling and the macmillan nurse is on call whenever the patient or relative may be feeling ill/stressed.

What may be offered and what transpires are two very different things ......

....and should the burden of caring become to much the patient goes into a NH at no charge.

Totally and utterly wrong. My mother's cancer diagnosis means she is already on 'borrowed time' .... yet she is self funded - not eligible for Continuing Care despite already needing 24/7 care, morphine etc etc and I even had to appeal to gain the Nursing Contribution!!!!!!

Try cancer AND dementia ..... it's a very cruel world ....

Sorry, that's my little rant over ....

Karen, x

 

[TinaT]

It is all complicated by the fact that Elderly Mental Health is split apart from the normal National Health Trusts which run our General Hospitals.

EM Health comes under the wing of separate Mental Health Trusts and very often most of the resources and energies of MH Trusts are devoted to acute mental health problems such as bi-polar, schitzophrenia, mental health problems related to drugs or alcohol, forensic mental health where patients commit serious crimes etc.,

This is why I work relentlessly on my local Mental Health Trust because I know that Elderly Mental Health services are the real 'Cinderella' of the service. How much longer this can continue is anyone's guess when younger and younger dementia patients are needing treatment. As you all know I am passionate in championing the rights of dementia patients, their carers and relatives but believe me, it is such an uphill battle! I had to be specially allowed to go on the Patient's Council which is the only body available in our area which attempts to change things for the better. I pointed out that I am not a patient but a carer. The type of patients I was champoining had no voice to be on any such committees. They saw my point and I have now been accepted as a member.

xxTinaT

 

[Marianne]

My father had Vascular Dementia and Ca.Prostate. He was self funder in CH. During the period he was in care he paid well over £50,000. It should have been free. If the needs of the patient are health needs then these are free at the point of delivery. This care can be in Nursing Home, Residential or their own home.

They thought in my dad's case that if they kept him in Residential Care they didn't have to pay. They also argued that his needs were being managed, a well managed need is still a need, not a cure.

I don't want to appear to anyone as a money grabber, it was the principle and the lies I was being told. They were depriving my dad of the correct level of care to avoid paying. I won back all of the money plus interest at a Retrospective Review last November.
Marianne

 

[jude1950]

Dear karen.

My post seems to have offended you , If so I do apologise, It was not meant to cause anyone any offence rather to point out the difference in MY area when life threatening terminal illness diagnosis is given. The follow up by the Macmillan nurses is correct and I have nothing but admiration for the work they do.
As to the hospice movement ...also in my area they will not take Alzheimers patients for day care or end of life care.
My rant was not directed at cancer patients but at a health service that does not deliver the same level of care to other illnesses. In an ideal world we should all get the same level of care, from your earlier posts Karen I know you have had to fight very hard to get the care your Mum needs. Without incurring your wrath.... if the Cancer diagnosis had come before the Dementia would it have been have been a different outcome when discussing continuing care?

 

[Brucie]

just to interject my own thoughts - just mine...

Besides the condition that is involved, whether it be cancer, dementia, MS, etc there are other variables that affect what happens to our loved one.

- the area in which we live
- the country in which we live
- the society in which we live
- the government of the day
- the level of demand for services where we are, and available budgets
- the Social Services department that is handling the case
- the NHS region that is handling the case
- the Social Services person who holds the case, and their team
- the NHS consultant who holds the case, and their team
- the level of knowledge held at all levels, for everyone involved, including ourselves

there are probably more things to add to the list, but so much seems to depend on this or that when it should be the best, for everyone, anywhere.

 

[jc141265]

Three more things to add to the list

And....I suspect:
1. the average age of the sufferers has an awful lot to do with it, although I may be shot down for saying so;
2. the length of time it takes for the disease to progress and the nature of the progression;
3. and the fact that it incurable at present;

Old Timers:
Alzheimers = Old Timers in most people's heads (I even heard someone at work mutter that phrase today when they forgot something). And being the daughter of a young sufferer I can clearly see the ageism that goes hand in hand with the treatment of sufferers of this disease, even when the sufferer is not old. Its like society has this attitude that as you are expected to die of something when you get old you should just accept this disease. Whereas when a younger person has been diagnosed with a disease there is shock and concern and understanding that this isn't fair and society rallies around to assist. It is accepted that older people will get frail and need to go into care homes, it is not questioned at all.

Duration & Nature:
Of course society doesn't want to provide ongoing support for sufferers of this disease. If Dad had had government aid, they would have been forking out money for him for the past 11 yrs. Then there's the nature of this disease...society sees it as a slow, easy slide downhill. You don't need support or assistance because you've got plenty of time to deal with it, plenty of time to prepare. What society doesn't realise is that it is not a slow, easy slide downhill, the sufferer has a part of them die every day and the carer has to deal with new situations pretty much on at least a monthly basis. If support and education was given immediately imagine how much of those precious last moments could have been saved to enjoy those last times with your loved one. Society thinks because the person is there, that you haven't lost anything....instead you start losing them from the moment the disease is triggered. I still remember painfully someone rolling there eyes at me, and saying "Oh Natalie, your Dad has been dying for ages" obviously thinking that I had no right to be upset. I should have said, "No, he died a long time ago, then I had another Dad and then he died, and then another, and another and another...and each one of them died, you inconsiderate son of a ....."

No Hope
I wanted to have hope, I wanted society to rally around and say this is not right, yes lets not give up lets work our butts off and see if we can find a cure. Dammit we've had 11 years to find a cure....but from day one the medical system washed their hands of Dad. I think 1. & 2. above also contributes to this cleansing. There is no sudden shocking externally obvious change to the sufferers, and then many sufferers also simply disappear from public view, so its easy to forget about them. I used to look at all the people in Dad's home and shudder and think how inhuman we become when old people get ill...we become just like animals...and leave the weak and frail behind. I guess its a survival instinct. There was a cyclone in my home town a few years back and the home was without power and running water for 2-3 days. If that were a hospital or a children's care facility that would have been unacceptable, there would have been people on the radio asking for donations of generators and priority attention from the electrical board, but there was none of this. I sat with my Dad and fanned him with a newspaper and kept running for water to keep him hydrated as it was the middle of summer, and only God could help those in the home who had no family, or no family who cared and he didn't seem to bothered about them either, why should he be when their communities weren't. People die all the time in old folks homes and there is not a batter of eyelids at all. Yes it is unavoidable that we die, but it shouldn't be acceptable that people die, alone and forgotten.

That's my rant for the day.

 

[merlin]

Judith

For what it is worth my experience with the big C versus AD is as you describe. My brother in law had prostate cancer and all possible help and treatment was given to him, in fact, he led an almost normal life up to 2 weeks before he died. My sister was overwelmed by the help.

But the main point that I always rant about on this subject is the huge amount of reaearch that has gone into finding a CURE for some forms of cancer seems to have paid of, whereas only belatedly has there been a push for more research into AD in this country and then not always for a cure, rather towards putting it on hold.

Fortunately as I now read the Alzheimers News I realise that the Americans seem to be throwing money at it and they usually get results so there is some hope for the future, assuming of course that the HHS and NICE can afford the new drugs.

Not in time sadly for my wife.

Merlin

 

[Tender Face]

Without incurring your wrath.... if the Cancer diagnosis had come before the Dementia would it have been have been a different outcome when discussing continuing care?

Nice one Jude! (You as others will realise I am pretty raw at the minute and my apologies too if things don't come out quite right!)

I think this is actually the nerve that struck hardest when I first read your thread and after much mullng over today - the issue I am most passionate about right now .......(aside from consent and the Mental Capacity Act, the issue of Continuing Care funding (at one with Marianne on that too - as I am sure most are - it's the principle of the thing!) etc etc ..... MY concern (and has been from two years or more hence when the docs thought mum had a cancer lurking somewhere, couldn't find any trace at that time, and put her weight loss down to dementia is that once someone has dementia they are in danger of being 'written off'. I think I used that expression many moons back ..... in fact I recall challenging one consultant on that very issue ..... (nothing compared to the ranting and screaming I've done about consultants since!) ........ and thank you - yes it has been an absolute 'battle' to secure a proper diagnosis for mum ... and I absolutely agree it should not have to be like this for any of us - whether it is physical or mental health we are concerned about ....... (SIX call-outs/referrals in mum's case recently to get a doc to agree she needed hospital intervention because of her physical health - hardly a fast-track!)

And I think TinaT makes a hugely important point - just using my mum as one example - we have fallen between stools ....... her palliative care team does not appear to encompass the professionals from the Mental Health Team we 'enjoyed' just two months ago ...... her oncology specialists failed to speak to her consultant within the same hospital etc ..... and the oncology clinics I have encountered in the last few years in my region are little better than cattle markets ....... (sorry, if that offends) ... but for someone to be asked to take a ticket to take a turn for their blood test (much like the deli at the supermarket - in fact one leading hospital uses exactly the same type of ticketing system!) is, IMHO, barbaric treatment of very vulnerable people (physically and emotionally) of whatever age or mental capacity .....

I dont see that a cancer diagnosis pre-dementia diagnosis would have made any difference to funding issues - I do feel it may have made a difference to mum's support team and holistic care had the diagnoses been reversed.... in a different post-code area - it may well have been different again ......

The National Health Disservice, in my eyes.....

That's my rant over - well for tonight!

Karen, x

 

[LIZ50]

Dear Judith

Regarding your comment about if the continuing care would be different if the cancer was diagnosed before the dementia my reply would be 'what care?'
My mum was diagnosed with terminal cancer and sent home to live with me with a care package and a 6-8 week prognosis. After this 8 week period all care package was withdrawn with a letter from the PCT stating that as the 8 weeks were up and Mum was still alive and getting better (!!?) then we no longer qualified for any help and I was on my own with her 24/7 but that I shouldn't struggle because they were leaving the hoist and the commode for me (bearing in mind that, at that time, Mum was doubly incontinent and bedridden). In the meantime she had been diagnosed with vascular dementia but she went on to live for a further 18 months with a lot of care,love and devotion from me. There was no continuing care for either illness and I had to fight to get her everything that I could and never even came into contact with a McMillan nurse. In fact, one doctor told me that they didn't really exist - it was just nurses with cancer experience!
At one time I even tried to get some respite care in the cancer hospice for Mum but I was told that she wasn't ill enough to go there. How does terminal cancer not qualify for that?
Sadly, as with many things in the NHS, it really is a postcode lottery, and some people win and others have to fight (well, in my experience anyway!)
Love Liz xx

 

[Short girl]

Hi

From my experience working in a social care environment - the health support is extremely variable even in the same area, or so it seems to me. I think most families get given details of the local Alzheimers Support group. In my Nan's case, the psychiatrist knew where I worked and assumed I knew where I get support. Don't forget if your relative is 65+ then Age Concern are quite good when it comes to benefit type advice too.

 

[jude1950]

Hello Karen we are all singing from the same hymn sheet being a carer really sucks sometimes.

Hi Liz
I was so sorry to read about the lack of support for your mum I am sure that she wanted for nothing being cared for by such a loving daughter it would have helped you to have had more support. It is a post code lottery,I know that the follow up care For cancer patients is very good in this area it should be the same in all regions and for all illnesses that was the point I was trying to make when I first posted. The trouble is with the written word it does not always convey the unspoken thoughts behind it and sometimes the message does not come accross as the writer intended.

take care

Judith