Oh yesssss, definitely @Melly1 AND all about economics…I’m rounding up various articles from 2022 to this year…
(@Michael_CarersUK @Paola_Carers_UK please could you pass that link onto your policy & public affairs team? - please feel free to use everything I’ve noted in this thread for subsequent anonymous quotes or input ‘by a long term carer’)
This was the NICE National Institute of Clinical Excellence overview, recommendations etc…except within it there is CLEAR statement of need to review caregiver burden (paragraph 3.1)
AS with ALL ideas The Implementation is sucking
In my opinion no one has really accounted for the fact that ANY admission is hugely stressful for all family involved and ‘discharging’ the clinical monitoring burden onto patients/carers on the day of discharge, extends that admission stress. In my view the separation of medical professional role and being family is important distinction.
Adding clinical responsibilities onto the family ordeal at the point of discharge is somewhat cruel, and in my case doubling the burnout rate (on top of the burnout-stress pre admission!!).
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As I see it there are three stages of extreme stress on carers around hospitals.
The first stage is the runup to hospitalisation. This can be anything from a couple of hours in an emergency situation, to a gradual but extreme increase in caring duties - as happened to @Chris_22081 during the couple of weeks before G went into hospital. Getting professionals to listen can be a nightmare during this time.
The second is during hospitalisation. Getting someone to talk to you, finding out basic stuff or even turning up to find an empty bed because actually the person you’re visiting has been moved. That’s a common one. The first time it happened to me was visiting Dad after he had a heart attack. You can imagine the reaction. Preparation for discharge is supposed to start from the moment the patient arrives at the hospital and absolutely this should involve the carer. I can honestly say it never happened during Mum’s last six admissions to hospital. I was only ever once contacted about discharge - and that was when they were hoping to discharge her to my house. But it’s not just communication. As much as the government will tell us that we’re not responsible for our loved ones’ care while they’re in hospital…well, it doesn’t work that way. Most carers I worked with were visiting every day, cooking food that they knew their cared for would eat, feeding them, bringing them clothes, reading material, battery chargers, etc.
Then there’s the discharge. No assessment prior - the rules now say “discharge to assess” because social services can’t keep up with demand. So the pressure is on the carer to provide the additional care, often without the right equipment or training. I’ve come across people who have had no training at all, even to give injections. Or they’ve just been handed an orange and told to practice on that. No moving and handling training, no hoist. To put this in perspective, every ward is now supposed to have a hoist: in the past, they didn’t and there were over 200,000 injuries among NHS staff every year. Nowadays it’s around 68,000. That’s the difference that greater awareness, better training and having equipment can make. Musculoskeletal health in the workplace | NHS Employers
And this is without “Hospital at Home” to add to the stress.
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You all witnessed the level of stress I went through when Graham was so ill for a couple of weeks before emergency admission. I am not sure I have experienced that much before and it was such a relief when he was admitted.
This time I was much more involved in his Care throughout his hospital stay (apart from cooking food - @Charlesh47 has it in a nutshell) and MUCH more since transfer to the Rehab/Enablement Unit. I’ve lost track of how much time I have spent running around rearranging appointments and in the last two weeks chasing my tail trying to ensure we have all the equipment and supplies we need for when he comes home on Monday.
I am going to be expected to catheterise him daily and apply the Conveens and empty his night bag (that I’ve been warned is needed twice nightly). Luckily he does not (yet) need injections. Thankfully I have completed Manual Handling Courses and others through workplaces, so I am probably ahead of many.
I cannot fathom the amount of work needed to be done by Carers for Virtual Wards. WTF ??? @victoria is already relaying the problems she had with the number of observations required and what happened when she was ill and unable to comply. The concept MAY be a good idea, but I fear the jury has to ‘be out’ on that for the time being unless those being pushed into the scheme have full training. I fear many would agree to it as they are sold on the idea of a loved one being home quicker - without realising what they are then expected to do.
Just my observations!
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The other stress with hospitals is the dumping of soiled nightwear on relatives, and the failure to keep clean and dirty apart. Instead all rammed into the same locker! Then there is the soiled/wet washing, some of it left festering for a day or two. I have my own health issues, three major ops in 6 years while mum was in and out of hospital. Frankly, no one cared at all about me. The current experiences of Chris mirror many of my own, with mum. Rather than talking to the carer on admission, to find out how they are, and what their loved one will need at discharge, they make everything as difficult as possible, keep us in the dark about illness, treatment and prognosis and then just get told on visiting that your loved one is in the discharge lounge about to go home! No thought whatsoever about whether the house will be warm, there will be food available, and someone there to settle them in. Mum lived alone! One week my father in law had a colonoscopy and at the last minute we were told he had to have “someone” with him overnight, so he had to overnight with us. We hardly had any sleep, he woke us up every time he went to the loo, every five minutes! Then mum had a carpal tunnel op. the day after he went home. No one considered that if she had her arm in a sling she wouldn’t be able to use her Zimmer frame! She told me she would be admitted overnight, and care was arranged. Wrong. It was a day admission and the Ward sister told me that I HAD to stay with her and do whatever necessary. I refused, we had a weekend business trip and Our disabled son was going with us. Only a complaint to the hospital CEO sorted that out. As carers we save the NHS a fortune but are treated like dirt. It would be so much easier if they worked with us, and if those caring at home for the most seriously ill were paid a proper wage for the care they provide rather than juggle work and caring.
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I have very bad experiences re Hospital Discharge and lack of communication. Even getting the Ward to answer their phones was a real challenge. When E was taken to LRI as an emergency, I did chase and was told they wanted him to go to Queens in Nottingham as he had had a brain injury (later confirmed as acute on chronic subdural haematoma) but needed to wait for a bed. I duly packed a bag with spare dressing gown and various things and thankfully phoned ward to be told he had been moved to Queens. It would have been a huge waste of taxi fare to have got there. No way could I afford a taxi to Nottingham. He was then discharged back to Leicester but tried to discharge himself from Queens thankfully they talked him down partially because they would not agree to an ambulance to take him home and he did not have money for the taxi fayre. When he had his Pulmonary Embolism they wanted to keep him in but he said his much younger wife WANTED to look after him.
The kidney ward staff were actually a very good team. When his kidney reading went down to 7 so he was in kidney failure and if I had not pushed the nurse to expedite the blood tests, he would have died. In fairness they were very good but again they were mega short of beds and discharged him in the evening despite telling me they would be keeping him in for a few days longer. In fairness the Consultant went and talked to him but he probably insisted he would have 24/7 care at home.
The diahorria thing was a total nightmare as I could not get through to the ward despite trying. The ECG reading was a bit iffy so I was not sure if he was even in LRI or had been sent to Glenfield. They promised to let me know when he was coming home as I literally did not know what he had and needed to get food in. I eventually go through to a junior doctor but not until he was in the Discharge Ward. She did say if I felt I could not cope with him she get support arranged. But he was dressed and in the discharge wing and NO WAY would he have agreed to stay in.
I wonder how many Carers
Have high blood pressure due to the stress?
Are on anti depressants due to trying to care?
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@selinakylie I don’t have the latest figures, but for years the numbers came back that carers were twice as likely as the rest of the population to have pretty much any serious health problem, including high blood pressure and depression. I’d be very surprised if the figures didn’t show that the longer you’re a carer, the higher the likelihood.
EDIT: CUK covers this here: Health | Carers UK
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Not really a surprise to those of us on “the inside”, is it? And still no-one listens.
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Hi @Victoria_1806 I hope you’re well. Sorry to hear about the recent challenges you have been recently. Thank you for sharing the link, I’ll share it with our Policy Team!
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