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Expectations of Care in a Care Home

GregT

Registered User
Jul 24, 2013
7
A close friend has early onset dementia - he's 57 years old, been diagnosed 5 years and also has MS. He's in a care home that is nice, clean, has friendly staff etc etc, but I and my friend's wife and family are concerned that what we'd expect in the way of 'care' doesn't happen. I would be interested to know others' comments on our expectations before deciding whether to raise the concerns with the Home's management. Briefly, my friend had poor mobility, but could dress himself, walk for short distances without problem (more a shuffle, but he could do so for several hundred yards without too much trouble). However about 10 days ago he had a fall in the bathroom and broke his shoulder and arm. Immediately after this he seemed to lose the use of is right leg, which he'd previously dragged a little, but now has lost any ability to support him. Probably MS related, of course.

This is a longish list of our expectations - sorry if it's a bore, but if you have the time to review and pass comment it would be appreciated. If our expectations are too much, then we'll modify the way we are tempted to address the issue with the Home's Manager; however if we are right to expect such standards, then we'd like to know that it is failings on the part of the Home whether they are common or unfortunate. So other people's opinions would be helpful. Thank you in anticipation!

So - I would expect my friend to have a care programme which would be regularly reviewed depending upon his evolving condition. This programme would take into account his cognitive stimulation, his physical condition which, due to the MS, can vary from time to time and his general mental and physical well-being being monitored and recorded, with appropriate action taken to deal with any deficiency - not just leave it to persist. However there is no evidence of this – questions asked of the staff are answered vaguely without any real indication that they even think about what his needs might be other than the rudimentary needs of washing, dressing and feeding. The manager seems to have very little awareness of any specifics of my friend and had no awareness of the hospital treatment or specific care for his injuries.

We expect that all patients' statuses are reviewed at shift change times so that incoming staff are aware of the current situation with each resident. Again, that doesn't seem to occur – I’ve had to tell each member of staff that I’ve come into contact with about his recent injury and what needs to be done to assist the recovery from the broken shoulder and arm. That said, there seems little compliance with those needs.

I’d expect that when a resident has a program of physiotherapy exercises to do, as my friend does to try to get his right leg working again, that he would be encouraged by carers at regular intervals in the day, every day, to do those exercises. He is quite happy to do these, but he needs someone to tell him to do them and make sure that he pushes himself. Despite those exercises being posted on the wall of his room I’ve had staff tell me they didn't know he was supposed to do them! Needless to say, no one other than family and friends have tried to get him to do them. Is this not part of what delivering ‘care’ should include?

In the current exceptional situation caused by the fall and fractures to his shoulder and arm, I’d expect that he would receive additional care and support – I’ve raised with the Home the hospital’s concern that his arm is left to hang freely while the bones knit together, not be supported by arms of chairs while sitting out of bed nor by pillows etc when in bed. Again, I told staff on our return from the hospital last Wednesday and wrote to the Home to confirm the concern. But this isn't being addressed. He’s put in chairs where there is an arm that interferes with the fall of the arm.

I’d expect that if a resident had to be taken to hospital for treatment that someone from the Home would go with them. This didn’t happen when he had his fall. Thankfully his son (18) managed to get to the hospital just in time to provide him some support and answer the doctor's questions, but to send a resident with cognitive illnesses to hospital on their own seems to me to be a dereliction of care. Is this an unreasonable expectation? I am truly shocked that a resident would be let out of a Home's care and supervision when they are not able to provide hospital staff with reliable information or responses to questions.

I’d expect that he would be given some assistance with eating presently whilst he has restricted motor abilities – he can’t use both hands at present and as a result when I saw him after he’d eaten, he’d got food down his front. He has a good appetite, so helping him to eat wouldn’t take long, just for a couple of weeks until the arm is more useable. Is this a reasonable expectation?

After returning to the hospital today to check on progress on his arm, the hospital nurses expressed surprise that his dressing had not been changed since last week’s hospital visit. Surely changing dressings is something that the resident Home nurse ought to be doing on a regular basis? Or is that a wrong expectation?

When he’s not able to be more mobile, I’d expect carers to spend more time with him to help pass the time easier. Is that reasonable? He can't operate a TV remote control, can't concentrate to read, can't tune a radio from one station to another without someone doing it, so needs a bit of stimulation in other ways.

On Sunday there was a garden party at the Home. I assumed that he would be put in a wheelchair and be taken down to enjoy the entertainment with the rest of the residents. His son went along to join in, but he was left in his room. Of most of the residents he’d have enjoyed the band most, I imagine since he's not too old, yet he was left out! Is it unreasonable to have expected him to be involved?

Lastly, today he returned from a hospital appointment at 3:30 in the afternoon and was immediately put to bed for the rest of the day. A 57 year old, who despite the EOD is still able to have a reasonable conversation about all kinds of things and doesn't need or deserve to be shoved into bed for 16-18 hours a day and who needs stimulation to his right leg to stop him losing its use permanently. Is it unreasonable to expect the staff to keep him up until at least mid-evening?

Again, apologies for the length, but these questions are what we will ask the Home's management - but before doing so we would like to calibrate whether we are being idealistic. I'm just unable to understand what 'care' actually means in a 'Care Home'. Whilst my friend may have no hope of cure or recovery, no one wants to see his physical and mental decline be accelerated by inadequate care, treatment, therapy and support. Thanks for listening! :)
 

juniepoonie

Registered User
Jun 11, 2013
727
essex
hi I don't yet have any experience of care homes as my bil is in n.h.s assessment unit an we are waiting for nursing home place. I don't think you are expecting to much for your friend and I would be equally upset at your findings. to leave him on sunday was terrible why wasn't he included? I do hope you can help your pal and his wife she must be very distressed. good luck juniepoonie.
 

Jessbow

Registered User
Mar 1, 2013
3,080
West Hertfordshire
So - I would expect my friend to have a care programme which would be regularly reviewed depending upon his evolving condition. This programme would take into account his cognitive stimulation, his physical condition which, due to the MS, can vary from time to time and his general mental and physical well-being being monitored and recorded, with appropriate action taken to deal with any deficiency - not just leave it to persist. However there is no evidence of this – questions asked of the staff are answered vaguely without any real indication that they even think about what his needs might be other than the rudimentary needs of washing, dressing and feeding. The manager seems to have very little awareness of any specifics of my friend and had no awareness of the hospital treatment or specific care for his injuries.

He must have a care plan. Ask how often it is updated/reviewed. Was the care home manager made aware of the treatment and the specific care he needed.

We expect that all patients' statuses are reviewed at shift change times so that incoming staff are aware of the current situation with each resident. Again, that doesn't seem to occur – I’ve had to tell each member of staff that I’ve come into contact with about his recent injury and what needs to be done to assist the recovery from the broken shoulder and arm. That said, there seems little compliance with those needs. Do they really not hand over? I'd say most do, if they don't I'd be asking why not.

I’d expect that when a resident has a program of physiotherapy exercises to do, as my friend does to try to get his right leg working again, that he would be encouraged by carers at regular intervals in the day, every day, to do those exercises. He is quite happy to do these, but he needs someone to tell him to do them and make sure that he pushes himself. Despite those exercises being posted on the wall of his room I’ve had staff tell me they didn't know he was supposed to do them! Needless to say, no one other than family and friends have tried to get him to do them. Is this not part of what delivering ‘care’ should include? Not knowing that he needs to do physio is poor. Yes I do believe someone should at the very least be encouraging him, how often I guess depends on the complexity I suppose.

In the current exceptional situation caused by the fall and fractures to his shoulder and arm, I’d expect that he would receive additional care and support – I’ve raised with the Home the hospital’s concern that his arm is left to hang freely while the bones knit together, not be supported by arms of chairs while sitting out of bed nor by pillows etc when in bed. Again, I told staff on our return from the hospital last Wednesday and wrote to the Home to confirm the concern. But this isn't being addressed. He’s put in chairs where there is an arm that interferes with the fall of the arm. OUT OF ORDER - complain loudly! But do understand that it maybe difficult to sit him in a chair without arms safely

I’d expect that if a resident had to be taken to hospital for treatment that someone from the Home would go with them. This didn’t happen when he had his fall. Thankfully his son (18) managed to get to the hospital just in time to provide him some support and answer the doctor's questions, but to send a resident with cognitive illnesses to hospital on their own seems to me to be a dereliction of care. Is this an unreasonable expectation? I am truly shocked that a resident would be let out of a Home's care and supervision when they are not able to provide hospital staff with reliable information or responses to questions. Depends on staff levels. I guess if a reduction in staff put others at risk, then they have to rely on family. I guess they knew you'd attend, given your interest in his welfare

I’d expect that he would be given some assistance with eating presently whilst he has restricted motor abilities – he can’t use both hands at present and as a result when I saw him after he’d eaten, he’d got food down his front. He has a good appetite, so helping him to eat wouldn’t take long, just for a couple of weeks until the arm is more useable. Is this a reasonable expectation?Again, maybe. Ensure his food t cut up and be awre he might need help, but I wouldn't imagine they'd feed him as such.

After returning to the hospital today to check on progress on his arm, the hospital nurses expressed surprise that his dressing had not been changed since last week’s hospital visit. Surely changing dressings is something that the resident Home nurse ought to be doing on a regular basis? Or is that a wrong expectation? Were they specifically instructed to? If not, then leaving well alone would possibly reduce infection risk

When he’s not able to be more mobile, I’d expect carers to spend more time with him to help pass the time easier. Is that reasonable? He can't operate a TV remote control, can't concentrate to read, can't tune a radio from one station to another without someone doing it, so needs a bit of stimulation in other ways. Not nessesarily more time but check that he's not bored with what he's doing ie TV station[/FONT]

On Sunday there was a garden party at the Home. I assumed that he would be put in a wheelchair and be taken down to enjoy the entertainment with the rest of the residents. His son went along to join in, but he was left in his room. Of most of the residents he’d have enjoyed the band most, I imagine since he's not too old, yet he was left out! Is it unreasonable to have expected him to be involved? Normally yes, but was it safer not to include him if they thought his arm might get bumped/knocked? Could it really safely hand down without an arm rest in a wheelchair?

Lastly, today he returned from a hospital appointment at 3:30 in the afternoon and was immediately put to bed for the rest of the day. A 57 year old, who despite the EOD is still able to have a reasonable conversation about all kinds of things and doesn't need or deserve to be shoved into bed for 16-18 hours a day and who needs stimulation to his right leg to stop him losing its use permanently. Is it unreasonable to expect the staff to keep him up until at least mid-evening? Seems a bit off - is he capable of saying he's tired?

Again, apologies for the length, but these questions are what we will ask the Home's management - but before doing so we would like to calibrate whether we are being idealistic. I'm just unable to understand what 'care' actually means in a 'Care Home'. Whilst my friend may have no hope of cure or recovery, no one wants to see his physical and mental decline be accelerated by inadequate care, treatment, therapy and support. Thanks for listening! :)
hope this is of some help - maybe other will think differently
 
Last edited:

FifiMo

Registered User
Feb 10, 2010
4,710
Wiltshire
Hiya Greg

You might find the following leaflet from the care quality commission, the regulator for care homes, useful. It tells you what you can expect and how to complain if you don't get it.

http://www.cqc.org.uk/sites/default/files/media/documents/6567_cqc_carehome_a5_amended_web_tag.pdf

Care plans are normally central to what a person's needs are and his wife should ask to see this. If it is either not there or not being followed then you could perhaps accompany your friend's wife to discuss things with the manager. If that still doesn't get the level of care required then you can complain to the CQC! In case you end up going down this route, his wife, son and you should gather evidence ... Take photos on your mobile if need be, start a diary and note things that are unacceptable on a daily basis. Include in there, details of any discussions and what was said by whom!

If there are any issues which need immediate attention then you could contact the social services Dept and ask to meet to discuss these as soon as possible!

I hate to say it, but your friend would be treated with greater respect and consideration if he was in Jail!!! The poor guy would be forgiven for thinking that is where he has been incarcerated

Hope this helps,

Fiona
 

copsham

Registered User
Oct 11, 2012
586
Oxfordshire
Outrageous

Not answering specific points but I must say your friends experience is unacceptable.

The problem to me is when the complaints are so, so many it is hard to deal with them without being dismissed as a complainer and not taken seriously. I was in this situation when my mother was in hospital - it felt that everyday there was something new to be concerned about and deal with. For this reason I would say have you considered a move to another unit?

In the nursing home my mother is now in the atmosphere is totally different. Overall good quality care. On the couple of ocassions that I have had to raise a concern they are acted on. One time a member of staff was being very overpowering and noisey, when I tactfully told her that she had upset my mother she was mortified and apologised then sought out my mother and apologised to her. Another concern related to her foot care and this was remedied the next day. It seems this is the opposite of your experience.

I find that I can actually be an ally of the staff over all, can value the staff and enjoy meeting them when I visit. BUT when the concerns are so many this is not possible.

My view is that good quality of care stems from the manager downwards and although you can take issue with 100 things that are wrong if the care isn't in him or her real changes will not happen. It should not be necessary to move your friend but when my mother was receiving neglectful care in hospital despite taking up lots issues nothing really changed. (the hospital is now on special measures with lack of understanding of dementia being one of the concerns.

It is such a painful thing to witness neglectful care. I hope that the situation resolves itself soon. He is lucky to have all of you looking out for him !!
Best wishes
K
 

GregT

Registered User
Jul 24, 2013
7
Thank you Fiona! See below:

You might find the following leaflet from the care quality commission, the regulator for care homes, useful. It tells you what you can expect and how to complain if you don't get it.

http://www.cqc.org.uk/sites/default/files/media/documents/6567_cqc_carehome_a5_amended_web_tag.pdf

Very helpful, thank you - will look into more details..

Care plans are normally central to what a person's needs are and his wife should ask to see this. That's what I'd thought - I have seen no evidence of such things at the Home, which is run by a large group

If it is either not there or not being followed then you could perhaps accompany your friend's wife to discuss things with the manager. Am hoping to do that - not that easy as he's quite a distance away, but I can do it
If that still doesn't get the level of care required then you can complain to the CQC! In case you end up going down this route, his wife, son and you should gather evidence ... Take photos on your mobile if need be, start a diary and note things that are unacceptable on a daily basis. Include in there, details of any discussions and what was said by whom!
Again, great advice and something I'd suggested to his wife - my original post was adapted from a draft letter I wrote with the idea that it would start a more formal structure to raising our concerns. We'll definitely build upon it.

If there are any issues which need immediate attention then you could contact the social services Dept and ask to meet to discuss these as soon as possible!Again great minds think alike! :) SS are funding the care, so I had suggested that one way to get the Manager's attention would be for the Continuing Care funding department at the local authority to also raise these concerns on the basis that they aren't getting value for money either!

I hate to say it, but your friend would be treated with greater respect and consideration if he was in Jail!!! The poor guy would be forgiven for thinking that is where he has been incarcerated
I think his wife said something similar earlier! :) It's how we feel though. He did ask her the other day "Is this it? Is this all that I have to look forward to?" which is heartbreaking... We are trying to get him a place in a Home more specialised with Early Onset patients - it's a fair distance away from where his wife lives, so she'd not be able to see him as often, but if the daily care was better and more suited to someone of his age - he's not doolally by any means, just unable to really process thoughts as well as he might, concentrate on anything for very long, or remember beyond a few minutes, (other than long term memories of say, schooldays) but in conversation he's not so bad - then we'd feel happier as I am sure he would.

Hope this helps,Enormously - thank you for responding so quickly and pertinently! :D

Fiona[/QUOTE]
 

GregT

Registered User
Jul 24, 2013
7
hope this is of some help - maybe other will think differently
Hi Jess

Many thanks for your comments - I am pleased at least that you feel that our expectations are not unreasonable! :)

On the care plan - as I've said elsewhere he doesn't seem to have one, at least not one we can reference or one that we've been made aware of by the carers. They don't seem to follow any kind of routine for him. And if there IS a hand over (there possibly is of sorts) then it doesn't seem to be that there is any process afterwards for the incoming shift to check on things. My daughter is a hospital nurse so I am somewhat familiar with their operational processes hence my expectation of similar in a Care Home - but just thought I'd check in case it was naive. But i can't imagine how any care home manager could discharge their responsibilities professionally (and cover their backsides) if the staff didn't have both care plans and a hand over process!

We offered to take in a chair without arms if they couldn't provide one - we understand the H&S stuff and why all chairs have arms, but it would be possible to position it next to a wall on one side and a cabinet (or something suitable) on the other to prevent the small risk that he might fall out sideways. He's concious and alert most of the day, so not like a resident who is prone to lolling over in a stupor..! It just seems there is no initiative amongst the staff....:(

Staff levels are good - there aren't that many residents (lots of vacant rooms) so I really can't see that accompanying him to the hospital would have been a problem (frankly it would give the staff member a bit of a change of scene! It wasn't known that his son or wife could get to the hospital when they sent him off in the ambulance - so it just seems very poor consideration or concern for what would happen when he arrived. Would the doctors at the hospital even be aware of the EOD? My friend (let's call him John!) would not be able to really explain what happened or answer many other typical questions and a doctor or anyone not knowing of his condition might think he was being stupid... It was a good thing his son could get there, but...!

There are nurses at the Home - i.e. it's a Nursing and Care Home, so one might reasonably expect that the nurses would automatically check dressings and slings etc. and if they had any concerns as to whether they should change a dressing either ask the hospital or his wife. He had a nasty cut on his elbow from the fall that had been stitched, but in the hot weather, the sweat etc can't have been good on the bandage and wound site. Again, it just seems there is a lack of initiative and basic process and procedure.

Thank you very much for your comments - they are very helpful and supportive to our views!
Greg
 

GregT

Registered User
Jul 24, 2013
7
Hi and thank you for your comments.

We are trying to get him into a home that specialises in early onset dementia - a bit of a journey from his home, so less convenient for family, but we do think he'd be better cared for there if only due to the EOD focus.

The home is quite nice in all other aspects - my friend is as happy there as one might hope, but then he's not demanding, he goes with the flow pretty much, though he does get bored. Unfortunately the other home has no vacancies at present and although he' s at the top of the list, he's kind of waiting for dead men's shoes OR a new extension being planned for 2015.

Sorry to hear you had similar issues with your mother - but pleased that you have her in a better place. We don't want to alienate the staff, who by and large are nice people - we just want them managed and directed properly so that the residents get the care they ought to be getting. I worry about those who don't have relatives or friends to fight for their rights!

I am conscious that it's a laundry list of complaints and agree that in some ways tackling a few at a time might be best, but on the other hand the other things are unacceptably poor, too - so what to choose for the first round...?! :confused:

>>My view is that good quality of care stems from the manager downwards and although you can take issue with 100 things that are wrong if the care isn't in him or her real changes will not happen.<<

Agree 100% - it's knowing whether the manager is doing her job right or not that is the first point. It seems she isn't - so first step is to address that with her directly. Then we'll see what changes, if anything - and if not then maybe we will have to move him, but ideally he'd stay there until the other place has an opening for him, to avoid disruption for him.

>>It is such a painful thing to witness neglectful care.<<
Indeed - ultimately it leads to accelerated decline, which is one of the main concerns we have.

>> I hope that the situation resolves itself soon. He is lucky to have all of you looking out for him !!<<

Thank you! It's the poor souls who don't have family or friends who are the most tragic. Thank you again for your comments - most appreciated.
 

GregT

Registered User
Jul 24, 2013
7
hi I don't yet have any experience of care homes as my bil is in n.h.s assessment unit an we are waiting for nursing home place. I don't think you are expecting to much for your friend and I would be equally upset at your findings. to leave him on sunday was terrible why wasn't he included? I do hope you can help your pal and his wife she must be very distressed. good luck juniepoonie.
Thank you! I don't know why they didn't include him - making it easier for themselves..??

Good luck with your BIL. Hope you have better luck!
 

FifiMo

Registered User
Feb 10, 2010
4,710
Wiltshire
Greg,

If you are looking for a home more suitable to his age group, please see if there is a home that caters for Brain Injuries. I only suggest this because one I am familiar with has much younger group in there and covered all types of injury eg someone who is brain damaged following a car accident or sports injuries or aneurysm the symptoms of which can be similar to dementia in lots of ways. Different vibe altogether in the place I visited and was clearly a younger person's place and certainly wasn't anyone sitting in armchairs round a tv day in and day out!

Anyway, just a thought of what might be an alternative, particularly if there is somewhere nearer home.

Fiona
 

GregT

Registered User
Jul 24, 2013
7
Greg,

If you are looking for a home more suitable to his age group, please see if there is a home that caters for Brain Injuries.

Fiona
Thanks for that suggestion Fiona. We'll bear it in mind. There are very few homes that specialise in Early Onset Dementia, to my surprise, given the increase in occurrences - we've only found two, both of the same group, in Milton Keynes and Peterborough. The MK home has agreed to take him, but is unable to provide a space at the moment and unable to predict when they may do, obviously, other than in 2015 when they plan on having an extension completed. The care there is at a higher ratio of staff to patients, the ages are generally up to 65, the activities are more tailored for younger people - so it's likely to be a better place for him overall. It's just a pity it's where it is, as it makes visiting by family and friends more difficult. The current Home is about 15 minutes from his family home.

We'd searched and researched on Dementia and EOD for finding possible Homes - maybe a search on brain injuries will offer other options. WHilst having him nearer friends and family will be preferable, ultimately it's about where he'll get the best care, stimulation, support and where he's happiest.

Thanks again.

Greg
 

GregT

Registered User
Jul 24, 2013
7
Where is the family home now? there is a good ''Headway'' in Northampton, or is that Further?
Wendover, near Aylesbury. So probably another 20 miles or so further than Milton Keynes. Might be worth checking out, though, for reference.

The current home has the advantage of being only about 15 minutes drive for his wife and son - other family members are another 30 miles or so further away, so Northampton would make it a very difficult thing for people to mamae regularly. I am used to long drives, but so many others would be put of by the distance. As much as anything it's the time involved to visit, of course. Northampton and spending some decent time there makes it a day trip, which makes it hard for people with busy lives and other commitments. :(

Greg