Carers experiences of Nursing Homes

[lesbac1]

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 am particularly interested in staff attitudes and morale. Do you think care staff should receive more training in dementia care provision or are you generally satisfied with the care given to your loved one?. Do you think there is too much emphasis placed on tasks at the expense of good quality psychological and social interventions?. I would love to hear the views of all the people out there who have had to place a relative in a nursing facility. Does the care offered match the care that was described to you when you first visited the home?. As I think I mentioned in my very first, and to date, my only posting on this site I used to work both as a nurse and a manager in care facilities and so have my own views on this subject but I would be fascinated to know if they are shared with service users.

 

[Skye]

Hi lesbac1

My husband has been in an EMI unit of a care home for a year. The ups and downs are documented in my thread 'Worried about John'.

I'm very happy with the way he is cared for, it's far better than I would have imagined.

The staff are on the whole kind and conscientious, with the odd exception.

John is always clean and smartly dressed. He is put to bed every afternoon -- no easy task as he is 6'2 and well-built. I go in twice a day to feed him, unless I have a meeting, I always let them know if I won't be in.

The staff are always ready to listen to any comments, good or bad. The two heads of unit are RMN, and there are other staff nurses on duty. The carers are all involved in NVQ training, moving and handling, and the AS YTT course.

There is an excellent activities co-ordinator, who gives the residents of the unit one-to-one attention. She regularly takes John to the sensory room. They also have percussion instruments, which are also used on a one-to-one basis.

Of course it's not perfect, how could it be? I've had a few complaints. But I feel we have been very lucky.

 

[lesbac1]

Thank you for the information

I am very glad to hear that you are pleased with the care your husband is receiving and hope it continues in the future. The Home sounds like a model on how other homes should be run but, unfortunately, judging by some of the comments I have received from supposedly EMI specialist homes in this area,this is not always the case. I hope you don't think that I am prying but I wonder if you could let me know if the Home in which John is resident is an independent home or one owned by a large company?.

 

[Skye]

It's part of a chain. I'll PM you the name.

 

[lesbac1]

Thank you.

Thank you. I would appreciate that very much. best wishes for the future and keep smiling. Les.

 

[Brucie]

I'll PM you the name

Well done Hazel - please can everyone remember that names of care homes or their staff should never be posted on TP.

http://www.alzheimers.org.uk/talkin...ocuments_info.php?categoryID=12&documentID=47

 

[lesbac1]

Not too sure of what you are trying to say here.

Hi Bruce,
I wonder if you could elaborate on your rather mysterious posting. I am only too well aware that it is extremely tiring and a time consuming vocation looking after somebody with dementia. " Batting and battling for the good guys/"??

 

[JPG1]

Hello lesbsac1

It goes without saying that all care staff should receive more training in dementia care. There is so very little training of care staff or even nursing staff in the provision of dementia care … it is absolutely essential that dementia-awareness and training is included as a basic requirement for any single support worker, or nurse, or GP (most of whom have no training in dementia-issues).

There are so very few people who are “generally satisfied with the care given”; there are some who are hugely satisfied, and they are the very lucky ones, but there are many others who are not satisfied. In fact there are possibly more who are not satisfied than there are who are satisfied. Fortunate for the satisfied ones; unfortunate for the dissatisfied ones.

Don’t understand your question: “Do you think there is too much emphasis placed on tasks at the expense of good quality psychological and social interventions?”

Does the care described as being available match the reality: not often. Very rarely, unless you are unbelievably lucky!!

A so-called “flagship care home” and also described as the “way forward in the care of our elderly vulnerable citizens” is suddenly, within one year of opening, subject to an enforcement notice, just the first step before being closed, with many of the key personnel having already been dismissed, must indicate to everyone that “all is not what it may seem”. And that a residential care home that CSCI allowed to be registered as a “residential care home with nursing, suitable for persons with dementia” is perhaps not what CSCI should have allowed to be registered, as a residential home able to receive 86 dementia sufferers.

Most residential care homes in England are privately owned and are part of a very big chain of “Care Home Providers”. It is a very lucrative business to be involved in. Very lucrative also for any GP practice willing to take on those 86 residents onto its books ---- FOR A FEE, FOR A MASSIVE UP-FRONT RETAINER FEE. Regardless, often, of whether or not that same GP practice comes up with the support-service-care-medical-care that is normally required of a GP practice.

So, in the same way you asked Bruce “Not too sure of what you are trying to say here”, we are tempted now to say “Not quite sure what you are asking here”.

”Batting/battling for the good guys”? You asked about that, lesbac1.

Well, the only good guy, or rather enormously good gal that we are batting/ battling for here is one heck of a Great Gal, one superbly wondfrful Great Good Gal, and that is all that matters as far as we are concerned.

 

[lesbac1]

Hi JPG1,
Thanks for your posting. Although I have my own opinions on standards of care and training in EMI nursing homes I am reluctant to voice them on this site as I don't want to influence any replies I receive. Suffice to say that I am a strong advocate of Person centred dementia care which many homes purport to subscribe to but , in my research and experience, know very little about. Person centred care means exactly what it says ie. all the care, physical, psychological, social, and spiritual should be based on the individual person with dementia with personhood being at the hub.
Perhaps the greatest advocate for this form of care was the late professor Tom Kitwood of the Bradford Demntia Group. This group is the only academic group in the country which concentrates on "best practice" in dementia care. Whilst researching one of his many papers he was horrified at the poor standard and quality of care in supposedly specialised homes leading him to comment that the current fetish of cost effectiveness is an obscene abuse of our elderly people.
Something I have been surprised at in my own research is how little the " trained staff" in EMI homes listen to carers on how best to nurse their loved ones and how hardly any attention is paid to the pre morbid history of the client which should form the basis of their care plans.
I was also interested to note that you feeel GP's have little or no training in demntia care. I am currently liaising with an American professor who devised a system by which carers and GP's (or the US equivalent) formed partnerships where both parties had equal status and learned from each other.When I have collated alll the data he has sent me I will try to summarise it on a seperate thread.
Best regards.
Les.

 

[connie]

Hi lesbac, I can only speak for my dear Lionel when I say that we have found a home that ticks all the boxes. I do all aspects of personal care for him, feeding, washing his hair, changing his pads etc (along with another carer as he is a two hander).

Something I have been surprised at in my own research is how little the " trained staff" in EMI homes listen to carers on how best to nurse their loved ones and how hardly any attention is paid to the pre morbid history of the client which should form the basis of their care plans.

As I am involved in every aspect of his care I know that he could not be better treated. They have listened to me all along the way. I even get to sit in when the GP is called out to see Lionel for minor ailments. I agree with the "Person Centered Care" and this is practised at the home, along with staff having dementia training.

Dr Graham Stokes wrote a very good book on this subject back in 2000. He used to give talks to carers aroung the country. I take his articles in to the care home when ever anything appears on this matter.

Obviously nothing is 100% right all the time, but again they are always willing to listen. Lionel is on a secure EMI unit, but you would be hard pressed to find a nicer place to visit - with all residents being treated as individuals first and foremost.

 

[lesbac1]

Thank you for sharing that with me.

Hi Connie,

It gladdens me to think that there are Homes out there that practice Person Centred Care as it should be practised. And thank you for the reference to the Doctor. Very interesting. Best of luck in the future.
Les

 

[Skye]

Dear lesbac

I am very distressed to read your latest post.

In your first post, you stated that you were conducting a survey, and suggested that this was part of your work with the Central Sussex Branch of the Alzheimers Society. Do they know what you are doing?

It sounds from your latest post that your mind is already made up, and this is no way to conduct a survey.

I can only repeat that my experience parallels Connie's, and would add that all the homes in our group use the YTT course on person-centred care, which is am AS course.

I wish you had been more open in the first place.

 

[lesbac1]

Re. Distress

Dear Skye
I am so sorry to hear that you are distressed. My work is towards a project whereby we may be able to offer a new service to people who have the heart rending decision to make about what Home their loved one should be placed. It would involve somebody with experience of caring for people in a nursing home environment accompanying them when they visit homes and providing an objective viewpoint.It is not the policy of the Alzheimers Society to condone or condemn Homes but it is the policy to support carers in whichever way they can.
Obviously I have my own opinions of care offered in SOME establishments having worked as both a nurse and a manager up and down the country and having had to place my own mother in a Nursing Establishment owned by a large chain.
But my interest in carers' perspectives is genuine and the provision of excellent person centred care care is both an interest and a passion of mine.
My research is for my own use and is not connected, funded. or supervised by the Alzheimers Society. My drive to seek others' viewpoints in standards of care has recently been fuelled by an article written in a local paper by a gentleman who uses our branch where he voiced his concerns over the lack of both funding and training for the staff in the Home where his wife recently passed away after a long illness.
I have no ulterior motives for this work. Again, I offer my sincere apologies for any distress caused. This was never my aim and I have nothing but admiration for all the people, like yourself, whose lives have been blighted by this terrible illness.
Best Regards
lesbac

 

[Skye]

.It is not the policy of the Alzheimers Society to condone or condemn Homes but it is the policy to support carers in whichever way they can.

I am aware of that, which is why I PMed you the name of the group. I would not have bothered if I had realised you were only interested in negative comment.

Suffice to say that I am a strong advocate of Person centred dementia care which many homes purport to subscribe to but , in my research and experience, know very little about

This is a blanket condemnation, and if you are working for a branch of AS, it might be better if you were to observe their guidelines. Perhaps it would help if you were to ask how many homes use the YTT course?

people, like yourself, whose lives have been blighted by this terrible illness.

I do not consider that my life has been blighted. I care for my husband with love, as do the staff of his unit. Their person-centred care extends to me, as well as to John.

 

[lesbac1]

My research was going to be used to help not hinder.

Dear All,
Thank you for those who replied to my questions. In answer to Hazel, I do not "work" for the AS I am a volunteer. My nursing career ended when I could no longer bear to come home at night exhausted, depressed, and feeling totally helpless. Not by the people I was looking after, that part of the job was totally rewarding and fulfilling, but by the constant battle I had with the owners of care establishments over their pre occupation with increasing their profit margins at the expense of good quality care and care staff whose morale was so low that many only lasted a couple of weeks and those that did stay were overwhelmed by tasks. I am very happy that some of you have had a positive experience of nursing homes. The purpose of the exercise was for people to relate both good and bad experiences in order that I might be able to write a more balanced proposal than if I had relied solely on my own experiences but it appears that this got lost in translation. I would like to reiterate that my research was not funded, supervised, or sanctioned by the Society. My aim was to put an independent proposal to our branch committee but , it appears, I am upsetting people in the pprocess and this was never my aim. I still wish to fulfil my original aim but I will not be pursuing it in the same way. Thanks again
Lesbac

 

[JPG1]

Hello, Les

Thanks for explaining what you meant by your question “Do you think there is too much emphasis placed on tasks at the expense of good quality psychological and social interventions?”

Person centred care – yes, please! That is what should be available to everyone, in our view. A holistic approach would not go amiss. Because a GP (which is the first point of call for most people who suddenly come across a possible dementia-related problem) needs to see and understand the ‘signals’ coming his/her way; and then to know and understand that many of the ‘signals’ being sent the way of the GP may be related to other existing medical conditions of the whole person. E.g. dementia and diabetes should send double warning signals to GP.

When I mentioned the fact that many GPs have no training whatsoever in dementia-related matters, it was because of the research we ourselves have done over the last few years, having been totally ‘gob smacked’ to discover that at least three GPs in the same practice did not even realise that a patient with dementia should not be told to “come back and see me in two weeks”, or should be given a prescription for 100 paracetamol tablets at a time!!

But it goes further, from the GP to social services – most people’s next point of call, if referred there by GP. Social services do not understand the urgency, very often. Because they too have little dementia-training.

I know your thread was about experiences of nursing homes, but I’m not sure exactly what kind of info you are looking for, so for now shall stop at GP and Social Services, before moving on to care homes. Because, if GPs and Social Services got their act together, then many people would not need to experience a care home as soon as is often the case.

Regards

Jay G

 

[gigi]

Well, the only good guy, or rather enormously good gal that we are batting/ battling for here is one heck of a Great Gal, one superbly wondfrful Great Good Gal, and that is all that matters as far as we are concerned.

Strange.....Somehow I thought we were all here to support each other.

gigi

 

[JPG1]

Strange.....Somehow I thought we were all here to support each other.

gigi

So did I, gigi, so did I.

I used the word "here" meaning the physical "here" not the virtual "here".

It goes without saying that all the efforts made on her behalf, in her own sheltered housing and then care home, were and are of enormous benefit to the other 150 people approx. and their own relatives. The whole of the local authority has, in fact, as a result of those efforts re-inspected systems in many other of the care homes in that particular area, and changes made there, too, are of great benefit to even more people with dementia and their families.

The dominoes are tumbling down, row on row, believe me. And being replaced gradually with all the truly genuine supportive systems that are based on truth and honesty and openness; open and transparent is the way we are beginning to see them. The main point is that they are now supportive, rather than destructively rotten. We personally can't change things in every single county of the UK; but we are making great steps forward in one authority alone, "here", and - if those steps spread further - may make life easier for others too.

And that is an ongoing commitment, not just to her, but to every single person and family affected by dementia.

We will continue to bat and to battle for her and indirectly for every single person affected by dementia, in our attempts to raise standards from GP, through Social Services, the care support structure, the care home structure. That is our commitment to her, even though we don't feel the need to broadcast it.


Jay

 

[lesbac1]

Read your post

Hi Jay,
Read your post to GiGi.Thank goodness there are people out there who are prepared to fight for better conditions and more awareness. I support you all without having a vested interest. It is just an all consuming passion of mine to raise awareness of the illness and campaign for better care and training where the services are not as enlightened as they might be. Hence, my study.

Regards
Les​

 

[Skye]

That is our commitment to her, even though we don't feel the need to broadcast it.

Jay

Excuse me?