How do we change the way NHS care for PWD in hospital?

woodbank

Registered User
Mar 27, 2019
10
Apologies for the long post but something needs to be done about the way the NHS is failing people with dementia. On Wednesday I spent a whole day at HRI with my mum on the acute ward. (She fell on Tuesday and spent a day in a&e waiting for tests and for a bed). I witnessed first hand how people with dementia are treated in hospital and it was shocking. Nurses only come if you press the call button. My mum didn't know what the call button was never mind remember how to use it and would never shout out for assistance as this would be bad manners. If I hadn't been there to ask for her a cup of tea, her lunch, her medication, prompt her about going to the loo and ensure she had her basic needs met she would have sat bewildered all day. As recommended by Alzheimers Society I gave the nurse the "This is me" document which explains about mum and how her condition affects her. I don't think she read it. I spent the whole day ensuring I got her out of that ward and back home to where her carers look after her really well. Finally got her home at 7pm. Luckily she now has no memory of having spent 2 days at HRI. If I hadn't been there she would have been sitting desperate for the loo and thirsty for a cup of tea, hungry and confused because lunch came an hour later than she's used to and because they forgot to bring her a sandwich at tea time. Without her hearing aids and her meds. In an unfamiliar nightie. She only got her needs met because I was there to look after her. This hospital does not allow carers of people with dementia on the ward outside of visiting hours which goes against best practice. Mum has now been given epilepsy medication because she's been feeling dizzy and fell. They did a myriad of tests including a brain scan but omitted to do a urine test to rule out the most common cause of problems in older folk, the urine infection. I made sure they did one and we will find out the results in a day or so. Maybe all she needed was antibiotics and she is now on epilepsy medication for the rest of her life in addition to all the other meds she takes. I bet this is happening every day all over the UK.
 

Bunpoots

Volunteer Host
Apr 1, 2016
3,777
Nottinghamshire
Hi @woodbank

I’m sorry to read about your mum’s experience in hospital. I too wonder what happens to the people who have nobody to help them. I hope she’s feeling better now.

I know a lot of people feel the same way as you that something needs to change about the way the NHS treat people with dementia. My dad’s experience in hospital was better than your mum’s while he was on the ward as they do have a system to deal with people who cannot easily feed themselves (it’s called red plate and the patient has a picture of a red plate above their beds to alert staff that they need assistance/ reminding to eat and drink).

The worst thing was they kept trying to discharge dad as “medically fit” even though he couldn’t do anything for himself, although he’d been independent before his stroke, to live on his own in his bungalow.

Some staff were better than others at understanding how to communicate with people with dementia - usually because of personal experience.

It'll be interesting to see what ideas other have to say about how to make things easier for PWD.
 

BryanG2001

Registered User
Mar 2, 2014
103
Recently spent an afternoon and early evening in A&E with Mum. She went in an ambulance and I asked them to ask if there was somewhere quieter for Mum to be other than in the main zoo of a reception/waiting area. The best they could do was a corner near the main door in and out of the treatment area, not even slightly quiet. Mum was OK for an hour but then started to get agitated, we had quiet a few walks around A&E to try to calm her down. Because of the agitation she was pushing back at the Doctors and Nurses, not actually hitting any but it was a close call. If she hadn't had family and carers there she would have been screaming and they would have probably had to medicate and admit her.

So I am afraid that the NHS don't have the staff, and so the time to care for people who need close supervision, they don't have the spaces, the quiet places. Mum didn't need to be in A&E, the blood tests and ECG could have been done at home, but around here they don't have that facility.

I should say that the ambulance staff, the nurses and the Doctor were all great with Mum and when they saw we were having troubles keeping her calm they did get tests done quickly, if 3.5 hours is quick. But it wasn't a happy experience.
 

Jessbow

Registered User
Mar 1, 2013
2,944
West Hertfordshire
I think it is very difficult. Ideally there would be a ward ( or two) for those with dementia where there needs could be better met with more trained staff BUT there medical needs are rarely the same. Consultants/Drs would end up running all over the hospital.

In an ideal world, there would be wards, just like there are childrens wards- set up to meet the needs of the patients

meanwhile maybe we have to insist on staying- there will never be enough nurses to meet demand.
1:1 would be great, but then there are so many groups that would like that as well.
 

Palerider

Registered User
Aug 9, 2015
1,271
North West
I think that this has been known about for sometime and there has been much done to try and improve hospital services for older people, but it seems not to be filtering through as it should. I think its very dependent on where you live and which hospital serves that area, but either way a vast many hospitals are struggling as they face increasing demand with ring fenced budgets and many have large deficits financially. I don't know how they will develop new services in the current climate, as well dealing with high staff turnovers and lack of ability to recruit desirable staff.

Some suggestions over the years are to have a seperate pathway for older people from walking through the door in A&E -this includes having their own area seperate from the main adult area. Where I work there is a frailty team (a consultant, physios, OT's and ACP's who specialise in older care) and they prioritise older people and speed up their assessment and decision making which is a huge improvement for older people, but (and there's always a but) for those who need to be admitted, pwd are admitted to general medical wards. It would be good to see hospitals come up with a specialist dementia ward for those who need admission with dementia or MCI.

Its worth reading around this as it has been a long standing issue and would be helpful for those who wish to put pen to paper and raise their concerns about pwd and hospital care. One is by the Kings Fund (2011) and the other is an NHS England guidance document -both of which clearly outline ways forward, but we have yet to truly see as carers of pwd

I dread the thought of mum having to go into hospital, and god forbid she does, I don't think I could bare it

https://www.kingsfund.org.uk/blog/2013/04/new-beginning-care-older-people-hospital

https://www.england.nhs.uk/wp-content/uploads/2014/02/safe-comp-care.pdf
 

Dimpsy

Registered User
Sep 2, 2019
1,016
This is such a good title for a thread, conversations about this subject take place on other threads but you have nailed the right question succinctly. This could be our rallying call for change!
(I'll add my five eggs when I finish work).
 

woodbank

Registered User
Mar 27, 2019
10
Hi @woodbank

I’m sorry to read about your mum’s experience in hospital. I too wonder what happens to the people who have nobody to help them. I hope she’s feeling better now.

I know a lot of people feel the same way as you that something needs to change about the way the NHS treat people with dementia. My dad’s experience in hospital was better than your mum’s while he was on the ward as they do have a system to deal with people who cannot easily feed themselves (it’s called red plate and the patient has a picture of a red plate above their beds to alert staff that they need assistance/ reminding to eat and drink).

The worst thing was they kept trying to discharge dad as “medically fit” even though he couldn’t do anything for himself, although he’d been independent before his stroke, to live on his own in his bungalow.

Some staff were better than others at understanding how to communicate with people with dementia - usually because of personal experience.

It'll be interesting to see what ideas other have to say about how to make things easier for PWD.
Thanks for your reply. It is going to be a huge problem with our ageing population. Despite studies and guidance from academics best practice is not filtering through to nursing staff. More needs to be done.
 

woodbank

Registered User
Mar 27, 2019
10
Recently spent an afternoon and early evening in A&E with Mum. She went in an ambulance and I asked them to ask if there was somewhere quieter for Mum to be other than in the main zoo of a reception/waiting area. The best they could do was a corner near the main door in and out of the treatment area, not even slightly quiet. Mum was OK for an hour but then started to get agitated, we had quiet a few walks around A&E to try to calm her down. Because of the agitation she was pushing back at the Doctors and Nurses, not actually hitting any but it was a close call. If she hadn't had family and carers there she would have been screaming and they would have probably had to medicate and admit her.

So I am afraid that the NHS don't have the staff, and so the time to care for people who need close supervision, they don't have the spaces, the quiet places. Mum didn't need to be in A&E, the blood tests and ECG could have been done at home, but around here they don't have that facility.

I should say that the ambulance staff, the nurses and the Doctor were all great with Mum and when they saw we were having troubles keeping her calm they did get tests done quickly, if 3.5 hours is quick. But it wasn't a happy experience.
Thank you for your reply. My sister was with my mum the day before in a & e and had a similar experience. A quiet area would have been great.
 

woodbank

Registered User
Mar 27, 2019
10
This is such a good title for a thread, conversations about this subject take place on other threads but you have nailed the right question succinctly. This could be our rallying call for change!
(I'll add my five eggs when I finish work).
Thank you. I look forward to reading your views
 

woodbank

Registered User
Mar 27, 2019
10
I think that this has been known about for sometime and there has been much done to try and improve hospital services for older people, but it seems not to be filtering through as it should. I think its very dependent on where you live and which hospital serves that area, but either way a vast many hospitals are struggling as they face increasing demand with ring fenced budgets and many have large deficits financially. I don't know how they will develop new services in the current climate, as well dealing with high staff turnovers and lack of ability to recruit desirable staff.

Some suggestions over the years are to have a seperate pathway for older people from walking through the door in A&E -this includes having their own area seperate from the main adult area. Where I work there is a frailty team (a consultant, physios, OT's and ACP's who specialise in older care) and they prioritise older people and speed up their assessment and decision making which is a huge improvement for older people, but (and there's always a but) for those who need to be admitted, pwd are admitted to general medical wards. It would be good to see hospitals come up with a specialist dementia ward for those who need admission with dementia or MCI.

Its worth reading around this as it has been a long standing issue and would be helpful for those who wish to put pen to paper and raise their concerns about pwd and hospital care. One is by the Kings Fund (2011) and the other is an NHS England guidance document -both of which clearly outline ways forward, but we have yet to truly see as carers of pwd


Thank you for your reply. I was thinking a separate ward for pwd with specially trained staff and a different approach to the call button would be a great start. Let's remember hospitals should be providing care that puts the needs of the patients first. Not making pwd fit the way the system is set up and putting efficiency before all else. A day spent experiencing care from the point of view of a pwd made me realise how much change is needed to get things right. Unlimited visiting hours for carers would be a good start.
 

Demi Jones

Registered User
Jun 14, 2019
13
Apologies for the long post but something needs to be done about the way the NHS is failing people with dementia. On Wednesday I spent a whole day at HRI with my mum on the acute ward. (She fell on Tuesday and spent a day in a&e waiting for tests and for a bed). I witnessed first hand how people with dementia are treated in hospital and it was shocking. Nurses only come if you press the call button. My mum didn't know what the call button was never mind remember how to use it and would never shout out for assistance as this would be bad manners. If I hadn't been there to ask for her a cup of tea, her lunch, her medication, prompt her about going to the loo and ensure she had her basic needs met she would have sat bewildered all day. As recommended by Alzheimers Society I gave the nurse the "This is me" document which explains about mum and how her condition affects her. I don't think she read it. I spent the whole day ensuring I got her out of that ward and back home to where her carers look after her really well. Finally got her home at 7pm. Luckily she now has no memory of having spent 2 days at HRI. If I hadn't been there she would have been sitting desperate for the loo and thirsty for a cup of tea, hungry and confused because lunch came an hour later than she's used to and because they forgot to bring her a sandwich at tea time. Without her hearing aids and her meds. In an unfamiliar nightie. She only got her needs met because I was there to look after her. This hospital does not allow carers of people with dementia on the ward outside of visiting hours which goes against best practice. Mum has now been given epilepsy medication because she's been feeling dizzy and fell. They did a myriad of tests including a brain scan but omitted to do a urine test to rule out the most common cause of problems in older folk, the urine infection. I made sure they did one and we will find out the results in a day or so. Maybe all she needed was antibiotics and she is now on epilepsy medication for the rest of her life in addition to all the other meds she takes. I bet this is happening every day all over the UK.
 

RosettaT

Registered User
Sep 9, 2018
363
Mid Lincs
I had fight on my hands most days over something or other for my PWD during his 12 weeks stay in hospital. Only 1 ward had an idea of what was required and the only ones who listened to me.
The good thing about the hospital tho' is they did have unlimited visiting for vulnerable patients so I think this must be down to local decisions.
 

Leeds

Registered User
Sep 20, 2015
157
Hi, I had 2 similar experiences with my dad. 20hours and 27 hours on a trolley in A&E. The place was Shocking, many vulnerable, elderly people in various states of undress. Many distressed and on their own. Medical staff too focused on looking at computer screens rather than interacting with patients. We have got this so wrong. I have written to dad’s mp and PALs pleading for their support . We must all do our bit to instigate change and challenge these inhuman treatment of vulnerable people. Xx
 

Juliematch

Registered User
Jun 24, 2017
129
I too had to ask for food and drink when dad was in a and e.They wouldn’t come near him,as he got frightened by a nurse wanting to put a swab in his mouth and lashed out.They just left us to get on with it. Don’t know what would have happened if he had been there on his own.I felt sorry for the sick patients having to listen to dads ranting. Yesterday the hospital social worker at my dads best interest meeting ,spoke to my dad as if she had read everything out of a manual. He didn’t have a clue what she was saying( not sure I did either) so he lost interest and she was out of her league.She had no warmth or compassion.I know it’s a difficult situation but I felt it was a tick box exercise( which it probably was) On the other hand the lady from the mental health team stepped in and took charge ,as dad had gone on one of his ramblings. I suppose you’ve either got it or you haven’t. Not sure what the answer is. Education in dementia but each PWD are so different. I just try to tell staff things that will help dad and hope they remember for the next dementia patient.
 

woodbank

Registered User
Mar 27, 2019
10
Hi, I had 2 similar experiences with my dad. 20hours and 27 hours on a trolley in A&E. The place was Shocking, many vulnerable, elderly people in various states of undress. Many distressed and on their own. Medical staff too focused on looking at computer screens rather than interacting with patients. We have got this so wrong. I have written to dad’s mp and PALs pleading for their support . We must all do our bit to instigate change and challenge these inhuman treatment of vulnerable people. Xx
Thanks for your post. I also saw a few older vulnerable people who were on their own not being treated with dignity. All the staff seemed to spend a lot of time glued to computers even wheeling them round on little trolleys. It was hard for me to get attention for my mum. If she had been on her own she would have got much worse care.
 

Bella Cleo

Registered User
Aug 31, 2013
14
Sadly hospitals are no place for people suffering from Dementia. The staff don’t have the time for one on one care they are stretched. The government need to realise this bed blocking costs the NHS millions. I hope Boris puts this on the top of his priority list and the green papers they were going to publish in 2018 will be.
 

Palerider

Registered User
Aug 9, 2015
1,271
North West
I agree whole heartedly, hospitals should be fitting their servives to the needs of the local people it serves and not be static in developing new ways of caring for different groups that use local hospital servces. As the rise of dementia nationally increases, hospitals are going to have to address the care they provide and come up with adequate service provision.

This thread is much more constructive than others I have to say :)
 

Juliematch

Registered User
Jun 24, 2017
129
My dad is actually bed blocking.Hes been fit for discharge since 6th of January.His carehome have refused to have him back and he’s sat on a ward, gradually get more and more confused until a new one can be found. I feel sorry for him, sorry for the staff, sorry for the patients that are ill and don’t want a person with dementia shouting and not understanding what’s going on. I wish I new the answer.Maybe they shouldn’t have shut the cottage hospitals , dads in a city hospital which covers a large area.Perhaps more dementia wards,as it’s only going to get worse. Definitely better training. Something needs to be done soon.
 

Lawson58

Registered User
Aug 1, 2014
1,982
Victoria, Australia
Going back years ago, hospitals in Australia used to have people called nurses aides or something like State Enrolled aides. They used to do most of the grunt work like bathing patients, dressing and feeding them but couldn't administer medications, dress wounds or similar procedures. Nurses were trained on the job in hospitals to take on these different responsibilities.

But then quite some time ago, every nurse had to have a university degree and the aides seemed to retreat to nursing homes, disabled care units and similar institutions, no longer to be a part of patient care in hospitals.
There was obviously a difference in pay scale which might have encouraged people to undertake a degree rather than be an aide but I believe that the distinction in roles made for a better system, better care for the patients and time for nurses to do the complicated procedures free of the basic aspects of care.
 

Splashing About

Registered User
Oct 20, 2019
372
My mum went to a dementia ward. The dementia ward had a day room decorated like a 1950s dining room and everyone was encouraged to go there for meals and not stay in bed. My mum was agitated and couldn’t cope with the bustle and noise so she was given a side room.The last one wouldn’t have happened if it had been busy. Not many used their day room but the intention/option was there. There were not enough staff but they were lovely. So far so good.

The staff were mostly fantastic however care was disjointed and lacked planning because they didn’t ask us...they decided what was needed...we gently disputed their opinion and plan but deferred to their professional knowledge. Plan failed. This went on for ten days until they listened to us (I may have been emotional and fierce at this point) and new plan put in place and we were discharged with new plan quite quickly. This stage was grim.

They don’t have enough staff to provide social care. Hospitals are trying to reserve their beds for people who need nursing care only. The big problem is patients who cross over that and need both e.g. dementia and learning disability. My sister is LD and when in hospital they have to provide a one to one HCA/carer who ‘specials’ her. Hugely expensive but under disability discrimination this has to be provided. Inequitable care for vulnerable patients includes dementia

Wasted money: Mum was given loads of food and fortified drinks every single day. Most went in the bin. At some point I wish they’d accepted her choices. She’s now happily surviving on custard, ice cream and milk.

I’d rather they spent money on caring for quality of life than trying to preserve it endlessly. She was given a pacemaker which has stopped her dying. I now visit someone who would naturally have passed away but is trapped in a bed, incontinent, slowly starving, distressed and unhappy. The pacemaker was put in a year ago and we’ve had a dreadful year. This is not an easy thing to write (or read I am sure) but I do strongly believe we as a society uphold the right to life but not quality of life. For myself on a personal level I would refuse that pacemaker at a point when my quality of life is so poor. Let me die naturally when the time is right.

I think because care is so poorly funded people confuse the issue of letting someone pass away when it’s the right thing to do ...with someone dying because it’s easier than funding their care or we are negligent in that care. I’m not proposing the latter. I’m proposing we stop blindly sustaining life and instead hold planned meaningful conversations and work out how to live the best one. Provide the right care, fund it and accept that will not always mean heroic medical care. Sometimes it means loving social care. The current situation is failing people.