Carers experiences of Nursing Homes

[Marianne]

Hi
My dad was discharged from hospital in Jan 2005 needing EMI care. There was 2 homes with vacancies to choose from, both owned by the same comapany. Within 7 weeks of going in this home the staff which were mainly agency staff had stolen almost everything he owned. He was desperate for medical help but his GP took him off his list and I was unable to persuade any other GP to visit him or give a prescription being as he had also run out of medication. He was re-assessed by SS and found to be only requiring a Residential placement.I was advised by SS to contact a home which SS described as one of the best in town.

I moved him to this home and whilst he settled well it was short lived. My dad was suffering frequet TIA's, and was prescribed Chlorpromazine b his GP. The staff mainly Asian brought in the country to work at this home so therefore not speaking much if any English couldn't manage him. They were blocking his doorway with heavy furniture to stop him getting out of his room. He was severely bruised on a couple of occasions with no explanation instead they had done their best to hide them.

The nightmare continued when my dad was being sedated, not sedated for an hour or so but sedated from 10.00 in a morning until turned 4.00 in an afternoon. My dad was also diabetic type2 but had never had any problems but I found he was being given Haloperidol solely to sedate him. This caused him to collapse suffering diabetic hypo attack and consequently led to him suffering a stroke and death. He died last year.

This home could not care for him but he was a self funding resident which I believe led the manager to sit in Assessments and lie through her teeth that she could manage him quite easily and state he was predictable. She was paid to lie. My dad was very unpreditable due to his illness, but when I questioned her about her statement of him being predictable, she said she meant he was "predictable to be unpredictable".

It is 14 months since he died, 14 months of sheer hell, knowing,seeing how this home caused such suffering to my dad and I have photographic evidence of the bruising. Regarding the drug abuse My complaint is now at the stage of the Healthcare Commission, for them to provide me with evidence of who prescribed the antipsychotic for the dates that I have written proof he was being given it.

The PCT promised to investigate but then stated being as my dad was dead no further harm could come to him (their words) they wouldn't bother.

If I can help you further I am more than willing to give you names/dates etc. Something has to be done about these homes. At the time my dad was in this home CSCI did an inspection they awarded the home 3 stars. But when I contacted CSCi about what happened to my dad in this 3 star home, their answer was it had nothing to do with them. Disgraceful!

 

[lesbac1]

Thank you Marianne

Hi,

I am so sorry to hear about your tragic and horrble experiences of care for your late father. As I mentioned in a thread I posted yesterday, I appear to have upset a member of the forum and so I am a little reluctant to carry on with my original work although I still see the need for a study to be carried out within this area. The care of people with dementia is a subject very close to my heart as are the standards of care in Nursing and Residential Care facilities.
I believe it is against the rules of the forum to mention the names of Homes in a thread but, if you want to share your experiences further with me,then by all means feel free to PM me.Without wishing to seem too biased, I actually expected more members of the forum to relate stories similar to your own. It is the practices you describe that led me to leave this area of nursing as I was ashamed to be associated with the obscene fixation of some home owners on profit at the expense of quality.
Best regards
Les.

 

[connie]

I believe it is against the rules of the forum to mention the names of Homes in a thread

That is quite right Les. It is the Alzheimer's Society policy.

Shame in one respect, I would love to shout from the rooftops about Lionel's care home. However things can change, for better or worse in homes, so we must be careful.

Without wishing to seem too biased, I actually expected more members of the forum to relate stories similar to your own.

How sad, what an indictment of todays caring society.

 

[jenniferpa]

Without wishing to seem too biased, I actually expected more members of the forum to relate stories similar to your own. It is the practices you describe that led me to leave this area of nursing as I was ashamed to be associated with the obscene fixation of some home owners on profit at the expense of quality.
Best regards
Les.

Hi Les

I don't want to seem unwelcoming, because God knows, the more knowledge there is out there about dementia and the appropriate way to care for our elderly the better, but this is I think what Hazel was highlighting. Information gathering is one thing and a research project is something else. It does sound like what you're trying to do is the former rather than the latter. Having said that, I think the quote I've highlighted illustrates what some of the misconceptions about care in this country. There are glaring examples of appalling care, and shining examples of excellent care, but most homes fall into the middle: average people trying to do their best in average conditions. The things that get into the papers are the appalling cases, and while not dismissing them as they are absolutely unacceptable, they are the exceptions.

People can spend a lot of energy talking about these things and pushing to rectify them and they should, because these are, 99% of the time, the result of illegal practices. That's the point - it's illegal so there are (or should be, and I know that this doesn't always follow) procedures in place to deal with them. Where I think people can make a real difference to the most number of people is encouraging carers (both family and professional) to treat each person as an individual, and encouraging companies that offer care to treat everyone they come in contact with (both staff and residents) as individuals as well.

I think it's a mistake to select a specific approach as the only correct one, just as it's a mistake to assume that what you hear about in the paper is just the tip of the iceberg when it comes to poor care.

 

[lesbac1]

Without wanting to seem rude.

Hi Jennifer,
And thank you so much for your observation. "Information gathering" is all part of a research project.Why else would I ask for the experiences?. I like to think I know a little bit about research methodology having been at university for 4 years and having written a 10,000 word dissertation about how health care staff communicate with patients.
I understand that what you read in the newspapers is the" tip of the iceberg" but I would be interested in your opinion of why this is so. If, as you say, most homes are just "average" then surely we should be campaigning for them to become better than average. Do you think that is why people have not posted many threads on their experiences of Care Homes?.Do you think it is because they are content with "average"?. My mother,a once fiercely independent and assertive character who is in a home in the North west,tells me some horror stories about the attitude of staff and yet, when I say I will make a complaint to the management,she tells me not to say anything in case the staff take it out on her. On the one occasion I did write a letter of complaint, the manager thought it " good practice" to take the letter to my mother and read out my comments.
As I think I have mentioned on a number of occasions, I am interested in the positive experiences as well as the negative. I don't know if you have any ideas on how else I might gather information. I see a real need for carers to have some objective professional support when choosing a Home which goes a little further than the publications I have read since my involvment with the society.However, as you started your thread by saying that you did not want to makke me feel unwelcome I can only assume that you do not wish me to continue posting or asking other members of their experiences. As you are a moderator I will have to abide by your wishes. Sorry for any upset caused I was only trying to write a proposition which, I believed, would have been of assistance to carers and their loved ones. I will be interested to hear your views on the above.

 

[JPG1]

Les,

There is a need for a study to be carried out in this area – please carry on with your original research project. (There are other studies being carried on in this area, too, but perhaps not being posted here, of course.) It would be a shame to abandon it so early on, when only 4 people have responded so far, two giving detail of extremely good experiences of care; two with experiences of sub-standard care.

You called it a ‘research project’ rather than a survey, so you are guaranteed to be presented with different experiences – some good; some less good. Some people may even have to read the phrase “very serious failings – substandard clinical care, bordering on neglect”, and when it is contained within a document that refers to your own relative, then believe me, you realise that there are indeed enormous failings in some areas of care. If you then read, that the ‘care home provider in question’ has been required to notify every single member of staff employed within all the homes they run, right across the UK, to stop, immediately, one particularly dangerous practice, then you really do have to think about the ‘global’ standard of care provided by that particular ‘chain’! Where Jennifer mentions ‘the tip of the iceberg’, it may be a very large iceberg under the auspices of one very large ‘chain’ of care homes, or it may be one iceberg in one single care home.

In the same way that on a forum, you can’t identify care homes or staff by name, (rightly, so), or chemists, opticians, or shoe shops, it would take a long time to put together a post that conveyed the good, the bad, and the ugly all in one post, in sufficient detail to satisfy your research project, and to satisfy every single reader who reads that post.

And if the person posting is in the middle one almighty ‘hell’, still fighting for their own - each of us has our own particular ‘hell’ experience, one way or another – then the sub-standard care issues, the neglect, the huge problems take over from the good. If like Marianne who posted earlier, you have spent the last 14 months dealing with issues of neglect, then it really must be extremely difficult for her to concentrate the mind back to the good areas, if there were any.

Jennifer mentions that there should be procedures to deal with illegal practices – so there should be. That is not always the reality, however, as anyone who has ever challenged the neglect of their own relative will know only too well. The structures within the whole care system are massively intertwined, making it cumbersome, to say the least, for family to work their way through – and that applies to every single aspect of ‘care’ from the first time you come into contact with the system onwards. From GP then to social services, to consultants, to hospitals, to mental health care teams, to support workers, to care homes, to the agencies supplying those care homes…. and so on goes the truly interwoven structure. These different ‘agencies’ often don’t even talk to each other – unless and until there is a crisis.

You will only achieve intelligent research results if you gather information / data /statistics /opinion /experiences that can then be evaluated in a meaningful way. Information gathered from wherever your research project takes you. So, don’t give up.

Jay

 

[lesbac1]

Thanks Jay

Hi Jay,

Thank you for your support. It means a lot to me to know that somebody seems to understand what I am trying to achieve.There is no personal glory in this for me.
I understand that people are going through their own " personal hell" and may not have time to relate their experiences just as people who are satisfied with the care their loved one is receiving may not have time to write about their experiences. As I have said in previous threads, I have many years experience dealing with carers and residents and would be surprised if there was any thread on here which either shocked or surprised me. It just seems to me that I am being regarded with a degree of suspicion as if I am some sort of "weirdo" who enjoys reading about other people. All I am attempting to do is make a difference and give people a helping hand in the future. That's not too bad an ambition is it?.
Les

 

[jenniferpa]

Hi Jennifer,
And thank you so much for your observation. "Information gathering" is all part of a research project.Why else would I ask for the experiences?. I like to think I know a little bit about research methodology having been at university for 4 years and having written a 10,000 word dissertation about how health care staff communicate with patients.
I understand that what you read in the newspapers is the" tip of the iceberg" but I would be interested in your opinion of why this is so. If, as you say, most homes are just "average" then surely we should be campaigning for them to become better than average. Do you think that is why people have not posted many threads on their experiences of Care Homes?.Do you think it is because they are content with "average"?. My mother,a once fiercely independent and assertive character who is in a home in the North west,tells me some horror stories about the attitude of staff and yet, when I say I will make a complaint to the management,she tells me not to say anything in case the staff take it out on her. On the one occasion I did write a letter of complaint, the manager thought it " good practice" to take the letter to my mother and read out my comments.
As I think I have mentioned on a number of occasions, I am interested in the positive experiences as well as the negative. I don't know if you have any ideas on how else I might gather information. I see a real need for carers to have some objective professional support when choosing a Home which goes a little further than the publications I have read since my involvment with the society.However, as you started your thread by saying that you did not want to makke me feel unwelcome I can only assume that you do not wish me to continue posting or asking other members of their experiences. As you are a moderator I will have to abide by your wishes. Sorry for any upset caused I was only trying to write a proposition which, I believed, would have been of assistance to carers and their loved ones. I will be interested to hear your views on the above.

Firstly I was posting as a member not as a moderator and it was not my intention to stifle debate on this issue - by all means ask members for stories, good and bad, although as you are aware if names need to be named it should be done via the PM system. However I think you have misunderstood me. When I mentioned "tip of the iceberg" I was in fact saying that what you read in the newspapers is not necessarily the tip of the iceberg. In other words, it is entirely possible the the truly awful stories do in fact get publicized and there is no "iceberg" underneath. So when you were expecting to get more "bad" stories you were assuming that there were only say 1 in 10 stories getting reported, but in fact, it maybe 1 in 2. I don't know - I'm offering it as a possibility for the low response.

The other thing to remember - most people posting here are way too wrapped up in their own care issues and frankly don't have the time and inclination to deal with anyone's problems but their own. One can wax philosophical about these issues, one can march on the bastions of power, one may even post on a website such as this, but probably not when you've been asked for the 40th time this hour by your loved one to "take them home" when they are home, or you are trying to clean up a bathroom after a toileting disaster.

I will say this though (as a member not a moderator): you yourself have stated that you expected more "bad" stories than you have had, so don't be surprised if we look at you a little askance. I accept that you're doing this from the best of motives, but on a website motives may not always be clear. As a moderator, I am sadly aware that everyone who posts may not be as they appear, or be whom they say they are. Many of our members have been burnt by that fact so again, it may take us a awhile to be forthcoming.

 

[Marianne]

but most homes fall into the middle: average people trying to do their best in average conditions. The things that get into the papers are the appalling cases, and while not dismissing them as they are absolutely unacceptable, they are the exceptions.

My father went into 2 homes both were absolutely appalling. I was paying almost £2000 per month for this so called care. I would have been overjoyed with a middle care home. In fact I could have placed him in a good hotel with that kind of money. He was allowed 60p per day food allowance, so the stew pot was on the boil every day. The Manager then fired the cook because she gave my dad 2 rashers of bacon instead of 1.

It is the politicians who get the write ups in the daily papers. They are usually saying how wrong it is to give Antipsychotics to Dementia sufferers and how they are causing strokes and early death. Give them a Brownie Point they truth of the matter is they don't really want to know.

Well my dad was prescribed an antipsychotic (no problem with that his GP had prescribed it) but he was having a second one which wasn't prescribed for him, just given to cosh him.

What do you think happens when you write to these concerned politicians, well I can tell you, they don't reply. The same also happens when you write to the Minister for Health, Prime Minister and all the rest who spout off.

So if these homes are the exception my dad must have been extremely unlucky landing 2 out of 2. And let us not forget the second home was a 3 star uncaring home, and probably still is even though the CSCI have been made well aware of the abuse/neglect and please don't forget i am not after Brownie Points or Money. I am doing this on principle and hope to get some justice for what this evil woman put my dad through, and there are another 40 odd people in that home.

I am really pleased for the people who have their loved ones in a good caring home, it is rare, but please try and understand that those of us who have not been so fortunate, more than deserve a little unselfish understanding, even if we are a minority which I have trouble believing.

If I could get my story printed or televised then I would. I have visited my local newspaper but they have much to lose from the Authorities.
I spoke to a TV Producer a couple of weeks ago, but unfortunately she was looking at a different care group, that must abuse and neglect. So we don't all finish up as fish and chips wrappers. But I might one day.

 

[JPG1]

most people posting here are way too wrapped up in their own care issues and frankly don't have the time and inclination to deal with anyone's problems but their own. One can wax philosophical about these issues, one can march on the bastions of power, one may even post on a website such as this, but probably not when you've been asked for the 40th time this hour by your loved one to "take them home" when they are home, or you are trying to clean up a bathroom after a toileting disaster.

But was your question not about Carers experiences of Nursing Homes, Les?

Most people dealing with what Jennifer described (as above) are not dealing with nursing homes, and nobody is wishing the nursing home on them, at any stage, but if it happens, then it happens.

Most of us have had to handle that most awful of questions "when can I go home" or have had to handle each and every one of those equally awful questions (specific to the individual, perhaps).

But those people would just ignore your thread, Les, because if they have no experience of nursing/care homes, they have no first-hand comment to make. And long may it continue to be so, for them. Long may they remain 'care home free'. Or if they need to find a care home, then one hopes that they find a good quality care home, providing all that it promised to provide. Not a mediocre moderate averagely average care home. That is not what we wanted for our relative - we wanted the best, not a mediocre care home, and "the best" is the way it was described to us, by social worker, by local authority, by mental health care team, by consultant .... but not to be.

 

[lesbac1]

Have sent you a PM.

Hi Marianne,
Have sent you a PM. I have found , in terms of the politicians you write to regarding dementia issues, that it is best to check their biographies to see who might have an interest in dementia. Certainly, I have found my own MP very supportive in these matters. I think it ia dawning on members of all the parties that the country is sitting on a demographic timebomb which is about to explode. Hence the much vaunted Dementia Care Strategy which is due to be debated soon and should recieve cross party support although, as usual, no mention of funding all the idealistic proposals has been mentioned. But, at least it is causing politicians to sit up and take notice.I believe that the AS had a lot of input during the consultation period.
Regards
Les.

 

[lesbac1]

Thanks again Jay

Hi,

Yes. That is exactly what I am looking for. By collating the results and adding my own professsional" insider" knowledge I/we hope to provide a service to carers faced with the decision to put their relative in to a care facility by relying on the experience of others and what they consider to be important factors in good/ bad care provision.
Les.

 

[Skye]

Hi,
I am currently working with the Central Sussex Branch of the Alzheimers Society and I am hoping to undertake a research project looking at standards of care in EMI nursing homes from the perspective of relatives who visit loved ones.

I refer you back to your original post.

Your initial statement implies that your research is undertaken under the auspices of AS -- that is not strictly accurate, is it?

Secondly, have you any idea what a research project entails? If not, I suggest your google research project guidelines. This site will give you a starting point:

http://www.cardiff.ac.uk/hisar/people/jh/GUIDELINES ON RESEARCH PROJECT DESIGN.doc

In fact, what you are doing is asking for people's stories of nursing homes, in the hope that they will support your own biassed view.

This has already been done, many times. I suggest you run a search on this forum on nursing homes and see how many hundreds of posts come up.

There is already an AS factsheet on what to look for:

http://www.alzheimers.org.uk/factsheet/451

So your 'research project' is certainly not research, which should be intrinsically original work.

 

[Brucie]

Moderator note:

The Alzheimer's Society's person responsible for Talking Point, Katherine, has, I understand, asked Les for confirmation of what he has said about his research.

Katherine was not in the office today, but prior to leaving had not received a reply.

Once we know the basis of Les's research we members will be in a position to decide whether or not we might wish to reply.

One of the problems of having had people on the forum before who have termed their practices 'research' is that they call into question more genuine work by others. It's what they do.

Perhaps it might be helpful for everyone to await Katherine's return?

Thanks folks

 

[lesbac1]

reply to hazel ( again0

dear hazel,

I believe the purpose of this site is to support one another in "leading the fight against dementia".
At the risk of repeating myself, I am more than aware of what a research project entails having spent 4 years at university and submitting a RESEARCH project of 10,000 words which entitles me to put BA ( hons) after my name.
The sole purpose of this particular RESEARCH project is to allow me to produce a proposition highlighting the need for an objective advisor to help people find the best Home for their loved one. To do this I need to seek the views, both good and bad,of carers in order to see what they believe to be good and bad practices. I was hoping to produce a paper to put before our branch committee in order that we could have a reasonable, rational debate as to whether this would be of help to carers. What is so wrong about that?.
In reply to Bruce, who I assume contacted Katherine in the first intance, she has actually been contacted twice. Once by myself and once by our branch administrator but we too have yet to recieve a reply.
I would just like to end this thread by saying that ,due to the negativity and somewhat hostile reaction from some people, I am seriously considering ending my connection with the Society.It appears that, despite he words of the CEO when he asks for ideas to be put forward to improve the lives of sufferers of dementia and their carers,such ideas are treated with suspicion, negativity, and are not encouraged by certain sectors of the Society.
If anybody had cared to ask me about my background, or indeed, read through all my responses on this topic, they would realise that I am only trying to help others. I gave a lot of my own time freely and of my own volition but I really don't have the time to keep having my motives questioned by the less enlightened when it comes to research issues. I suggest next time you contact Katherine you explain why the Central Sussex Branch of the Society has probably lost a volunteer with many years of both academic, professional, and personal experience of dementia care.
If I do decide to give up my role, I will be contacting the Chief Executive personally to explain my reasons.
Les.

 

[Brucie]

Hi Les

to be precise, the purpose of this forum is

"....is an online community for people with dementia and their carers, family and friends to discuss all aspects of the condition."
http://www.alzheimers.org.uk/talkingpoint/site/index.php

In reply to Bruce, who I assume contacted Katherine in the first intance, she has actually been contacted twice. Once by myself and once by our branch administrator but we too have yet to recieve a reply.

and of course you will realise why there has been no reply because I wrote above: "Katherine was not in the office today, but prior to leaving had not received a reply".

It is standard practice on an Internet forum [where there are bogus personae even here] to ensure that when views are elicited from the carers who rely on the forum, the statements made are checked.

If I do decide to give up my role, I will be contacting the Chief Executive personally to explain my reasons.

There is really no point in having a hissy fit on a forum where carers are coping with very much more fundamentally critical issues on a daily basis.

Let's await what Katherine has to say, eh?

 

[lesbac1]

Thank you for your observations

Hi Bruce,

As I have pointed out my sole aim is to assist carers in making the correct decision re. care homes. I am not in the business of trying to con people into giving me information to use in any other ways than the way stated in my original post. I understand that carers are having to deal with issues on a daily basis and probably do not have time to debate issues on the site.
I actually found your remark "hissy fit" both rude and offensive but if that how you viewed the thread then that is up to you.
I should imagine that Katherine has far better things to do with her time than investigating my motives for "infomation gathering" but that is another issue.
I discussed the negative responses with our branch administrator on Friday and told her that I was thinking of "throwing in the towel" with regards to my voluntary work with the Society. She said that I shouldn't do this but think about it over the weekend.
Comments made by Hazel and yourself are helping make my decision easier than expected although I have a number of personal messages which are both enlightened and supportive.
Oh, by the way, I am not new to internet forums and so do understand protocols but thanks anyway.
Best wishes
Les

 

[Marianne]

I am speechless, I wish when I was in the middle of trying to get someone to help me with my dad, I had remembered to pick up a leaflet "What should I do if things go wrong" which would have told me how to contact CSCI. Which leaflet would I have picked up to tell me what to do when CSCI said "it has nothing to do with us".

Just for the record I have also contacted SS, POVA, CSCI, PCT, MP,s galore, PM, Minister for Health, apolgies to anyone I missed off my list. So I don't think a leaflet would have helped me,do you. But I will continue to tell my story to anyone interested. Keeping quiet is not the answer to this widespread problem.It needs shouting from the roof tops.

The problem I believe stems from greed by the owners of these homes, for not providing sufficient training and for employing staff in the first place who cannot speak english to do the training.

My dad died, perhaps I was supposed to be grateful to the PCT for the CHC full funding + interest they gave me and took myself off shopping and not say a word about abuse. Would this have been more acceptable and English.

I applaud Les for taking time, his time to help this cause, which I am more than willing to paticipate in.

Cheers
Marianne

 

[lesbac1]

Thanks again Marianne

Hi Marianne,

It would appear that I too am supposed to just supposed to leave things alone. Even if I leave the Society I will never give up on my desire to improve care in these establishments and fighting for people such as yourself. It appears that this is not the forum to do this but, if necessary, I will form a pressure group ,outside the far reaching tentacles of the society, to make the public aware of poor standards and things which allegedly go on " behind closed doors". I will e mail you later today.
Thanks for your support
Les.

 

[Skye]

It appears that this is not the forum to do this but, if necessary, I will form a pressure group

Absolutely correct, Les. I applaud your initiative!