alzheimers nursing care.

[RCR50]

Hi I wonder whether anybody could advise please.

 

I was not sure whether this would be the right section to post this in but thought I would try.

 

My sister - in - laws mother in her early eighties has been unwell - was taken into hospital with an infection - whilst in hospital her usual forgetfulness turned into full blown alzheimers - really bad. After several weeks in hospital my sister in law was told that she had to find a nursing home for her mum - there is no way that she can be cared for at home as she needs round the clock attention etc.....

 

Basically the problem is that my sister-in-laws dad is paying £3,000 a month for this care because he has a little bit of savings. They are not wealthy by any means - simply that he had been careful and saved a bit etc....Whenever my sister-in-law has tried to look into things she has been told that alzheimers is not classed as an illness etc......It most certainly `is` a medical illness.....I wonder what would happen once her dad`s savings are gone - will they have to sell their house....

 

I do find this whole issue so very wrong....They have always ploughed into the state but there just never seems to be any help when you need it.

 

Any advice would be greatly appreciated.

 

Thank you

[tiglet]

speak to her GP, who can advise SS about this as a condition which requires constant attention. there is a duty to provide care - however, this is often means tested and I suspect this ma be where the problem is coming from, not the diagnoses of the illness. your sister-in-law's mum's consultant should be able to provide evidence of why this diagnosis was arrived at (rather than "dementia", which is often not classed as an illness, but part of growing old - wrong, but that's the way it is in some parts of the country). if this results in absolute refusal to fund a nursing home place, it may be an idea to discuss with SS the possibility of attendance and mobility allowances for someone to assist your sister-in-law's father with care at home.

 

my aunt has alzheimers and is currently cared for at her daughter's home under this system, although she also goes for respite breaks. it is coming to the point, however, where she will need to enter a nursing home and IMO, the best route is to discuss with SS and if they are no help, go to the CAB.

 

Hope this helps.

[RCR50]

Tiglet - Thank you so much for your reply.

I certainly will pass the information on to my sister in law.

There actually is no way that she could be cared for at home even with extra help.....apparently she is extremely bad. Infact my sister-in-law`s sister is a nurse and she and her husband actually own a residential home for the elderly but she could not even be looked after there because she needs intensive nursing care 24/7. Every angle has been looked at - even to hiring a full time nurse but that is totally out of the question as so expensive - they insisted on having her home for christmas - back to her own house - and it was a real exercise in convincing everybody that she could not be cared for at home.

Thank you again Tiglet - will pass info on.

With best wishes

PS - I am in Kent too.

[tiglet]

excellent - pehraps we should set up an advisory service (my husband works for the Royal College of Nursing).

 

I know it's hard, and I really do feel for your family, but they have to realise thereis a "process" that they have to go through. absurd, but true. if they have a sympathetic GP and/or consultant, it will make the process so much easier for everyone.

 

alzheimers is such a hideous disease. the most intelligent, lucid and intellectual people are not absolved from it's claw and it is devastating to see such bright people brought down by it's onslaught. if ever you, or your s-i-l, wants to pm for a bit of mutual support, you are more than welcome.

 

in the meantime, fight the good fight!

 

tiglet xxx

[RCR50]

Thanks Tiglet!

 

All the best.

[diddled]

I'm going off track a bit, but do you know that if someone is being disharged from hospital into a residential home, after being detained under a section 3 Mental Health Act 1983, they are not liable to pay any fees, these are covered under the system.

[emmaf01]

I am at the moment claiming for retrospective review of the nursing home costs incurred by my mother, who had progessive supranuclear palsy (like a cross between alzheimers and parkinson's disease).

 

You need to go to NHS funded Continuing Care and the Coughlan case and Alzheimer's Society website - the leading UK care and research charity for people with all forms of dementia, their carers and families .

 

Both of these sites deal fully with the issues surrounding funding for people with alzheimers and illnesses like it.

 

Funding is a right for those who need long term care, and the case has been proved already.

Just don't get fobbed off like we were.

[RCR50]

Dear Emma and diddled

 

Thank you both very much for your help.....Diddled, she was actually transferred from hospital to a nursing home and was kept in hospital until a suitable home was found but I don`t think anything else applies - but thanks.

 

Emma - thank you - I have passed info on - my sister in law had been told about the Coughlan case - what also seems to be a problem apparently is that she has actually been classed as having dementia rather than Alzheimers...I feel that I disagree.....I am sure that things will be sorted out eventually ...many thanks again for info. Good luck with the review of your mum`s nursing costs - hope all works out for you/

 

Best wishes

[tiglet]

If they are insisting it is dementia, insist taht she is seen by a geriatician and has a psychiatric evaluation - these people knwo how to diagnose between the two.

 

even if it is dementia, depending on how severe it is, if she does require 24 hour attention, they will be able to help you with social services on this.

[RCR50]

Dear Tiglet

 

Many thanks for your helpful post....I shall of course pass this on.....thanks for all your help.

 

Take care.

 

Diddled, I have only just `got` your name - very good - I love it! I am still trying to muster up the courage of actually posting my prelim letter because of being `diddled`.

[emmaf01]

Don't forget to obtain reports on her conditions and care needs from all her consultants/medical staff who have assessed her conditions, whatever they have labelled it. You also need an assessment by social services, and ask the PCT, who all have a continuing care team, to give her a nursing assessment.

Hope this helps!

[RCR50]

Emma hi

 

Thanks very much. I shall pass the info on. I am sure it will be very helpful.

 

Thanks again - much appreciated.

 

Best wishes

[honey1968]

hi rcr50 they are when when they say that alzheimers is a form of dementia,depending on which part of the brain it affects deppends on what it is called,did your sister in law no enquire about home care? any more help give me a shout as im a carer and what i dont no i will find out.

[Rob S]

I just found this thread as I am in a similar position with my 84 year old father. He had a stroke in 1996 which affected the left side of his body. He had some mobility but this has now been decimated by arthritis. His memory has gradually been getting worse and he was hospitalised a month ago with an infection. This has cleared up but they won't release my father because it is too risky. They have decided he needs to go into a care home, so we are now going through the process of a)finding one and b) finding one that will accept him with the numerous medical conditions he is suffering from. One home has already turned him down because his behaviour is too unpredicatable.

 

I had already found the Alzheimers Society website and I am ready to fight the war over the NHS continuing care and their obligations. I know it will be a long battle, but the info that the Alzheimers Society have on their website is excellent and I know that this is a winnable battle.

[emmaf01]

If you need ANY help or information, PM me. I won my case for continuing care funding for my mother, and will pass you details which could help.

 

Good luck! And you can win.

[Rob S]

Emma, many thanks for your kind offer. We are at the stage where the panel will assess whether or not my father meets their criteria for continuing NHS care and I am 99.99% certain they will reject it, so when that happens I will take you up on your offer and drop you a PM.

 

Thanks again:)

[emmaf01]

I went through a panel, on the 28th March and won. When is your panel and are you attending?

[emmaf01]

look at

 

NHS funded Continuing Care and the Coughlan case for help. Without them I wouldn't have won.

[Rob S]

I won't be attending the panel as my parents live some distance away, but I have written a detailed letter (using the guidance on the Alzheimers Society website) to put forward the case as to why we feel my fathers care should be funded by the NHS.

 

I know a lot depends on the PCT as it can vary from one PCT to another, but I am primed and ready to take the matter as far as I need to if necessary.

[emmaf01]

If the panel goes wrong. there's always the ombudsman. They key is tailoring your evidence to their checklist.

 

I hope all goes well for you. |And if it doesn't, ask for the minutes to find out what they said in the panel.

 

I don't envy you, as it is a process I'm glad is over for me!

 

The problem is they don't want to fulfill their obligations under the law. I won in March, and we think I will get payment in the first half of August!

[trixter444]

Hi there,

 

I totally 100% agree that the Alzheimers Society is a fantastic organisation and they are truly helpful. I am a Manager of a Care Home which specializes in EMI Nursing and EMI Residential, basically Alzheimers and Dementia. In response to the first post, if the client has more than £20,500 in savings, they are required to be a private paying resident (this is standard across the country) unless they qualify for Continuing Care of which the local PCT will certainly oblige to do an assessment, however, to qualify for Continuing Care, you have to meet a number of standards, some of which are extremely hard to meet. What People class as Continuin Care, can actually be assessed as EMI nursing at a high dependency level.

 

When your sister in laws mum went into hospital with the infection, (im guessing maybe a water infection or UTI??) this is a common infection that causes people to be confused before they are assessed as having alzheimers/dementia. I presume a social worker was involved, if they were, they should have done a financial assessment on her to see how much savings etc she has. Once the threshold of £20500 approaches, they need to get in contact with ss who will then take over payment of the home. £3000 is expensive for 1 months care in a residential home by the way, but i suppose it does depend on which part of the country they are in and if it is a private nursing home or not.

 

Your sister in law can always look around at other homes and explain how her mother in law is, somebody from that home will then usually go out to assess her to see if they can meet her needs. A lot of care homes do vary in the level of care that they offer, e.g 2 homes do EMI nursing but 1 may be very high level dependency unit, 1 may not be high.

 

Diddled is also correct in the fact that if they are under a section 3 or 17 they are covered by the state for the fees.

 

If she is in such a bad way, then the GP/nurse in charge at the home, needs to refer her to a Geriatrician for them to do their own assessment.

 

Hope this helps you, good luck!!

[emmaf01]

Social services are only able to assess a financial situation. People must be mad aware that it is the PCT who needs to assess for continuing care funding.

 

The criteria to meet for this are not as high as people are made to believe- the Coughlan ruling is explicit about the criteria which must be met.

 

Trixter444, it is wonderful to get the point of view from your situation regarding this issue. Have you got anyone in your home whose care is paid by the PCT in the continuing care system? And did their family have to fight to get the PCT to pay? (I understand you have confidentiality issues, but just a general answer would be great).

[trixter444]

Hi Emma,

 

Yes there are currently about 8 people in my home that is getting paid the Continuing Care, and no nobody has had to fight for that to happen. I do know some procedures have changed in how people are referred, in our home, the Community Matron who is assessing for RNCC (free nursing care) refers them for continuing care. It is extremely hard to get though as I say. One lady who was in the home is severe nursing, high falls risk, etc was NOT granted it. Out of the 9 standards they have to meet, she met approximately 5 of them and still didnt qualify! Mad.

[cassie]

My mum suffered from Alzheimers too; she died in March.

There are organisations that can help you; The Alzheimers Assoc and Carers Assoc were both very helpful to me.

There should be a local branch somewhere near you. Contact them and they will deal with your individual case for you - I know people are very kind and give their advice but it is a minefield trying to deal with NHS Trusts. There are differences in nursing care - some HAVE to be funded as hospital care and therefore you don't pay. Find out which would apply to you!..........Hope it works out for you...................cassie

[bankoff]

Hi RCR50

 

Sorry to come into this so late, but have not been around for a few months.

 

See my old thread on this very subject NHS - Should we pay for care, also look up the site NHScare.info, Stephen Squires is very helpful on this subject, my mother has dementia, I fought for her care to be fully funded and got it.

 

I would not have won if it was not for the help and advice on this site.

 

Regards

Bankoff