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Help! Hospital carers project - Carers UK Forum

Help! Hospital carers project

Take part in research or give your opinion in a survey.
I am a Public Governor at an NHS Foundation Trust and am in the process of putting together a carers' strategy for the Trust. I have quite a lot of information on what we need to be looking at with regard to the carer's involvement in the patient's journey through hospital through to discharge, but have very little information on the needs of carers when they themselves have to visit hospital to visit a specialist, have diagnostic procedures carried out or to have surgery themselves. I am interested in hearing of any specific experiences that carers have had which have been either difficult or helpful that might help us support carers better.
Many thanks,
Hi David, I put off having my hip operation until I could barely walk because of my caree and it was only because two very good friends put their lives on hold and took on his care that I eventually had the op. I had no support with my caree after my op. I have also had to miss a physio class because of my caring duties.

We have also had negative experiences when my caree was admitted to hospital ... I spent night after night trying to sleep in a chair (whilst my hip was really bad<) the ward didn't want me to leave my caree and they had no clue how to support him (he has classic autism) and I was desperate for food .... They kept wanting to move him out of the side room - but he would never have coped with an old fashioned Nightingale ward.

Your comments are exactly why I am passionate about doing whatever we can in our hospital to make life easier for carers. While I recognise that it can be difficult for some people to escape for even a few hours, my thoughts are that we should try to make it possible for registered carers to get through the system as quickly as possible. This might involve giving carers priority when they visit the hospital, ensuring that appointments are not cancelled, and finding ways to reduce the time taken for procedures. The important thing is that, if carers don't look after themselves, then they may well end up unable to care. Many thanks for your comments!

Sounds interesting research.
My comments will appear to be negative. Firstly, i think many of us put off many investigations of a "relatively" minor nature. Secondly, I think the huge majority of us worry ourselves silly about what will happen to/for our carees if we are seriously out of action for any reason.
In fact it is probably the biggest serious cause of stress in my own case.

I have no idea what will help. Carers circumstances are individual and diverse.

Have been negative (well i did warn you!) ...... but i am wishing you well with this. Image Image Image
Hello, Just seen this post.

I went to hospital for an ultrasound pre my hip revision operation and the Doctor doing the ultrasound was over an hour late.
As the appointment was 9am I left hubby in bed thinking I would be back for 10am with the travelling time. he's ok to be left for a couple of hours but I was sat there not knowing how long it was going to be. I spoke to the receptionist and she just said the Doc was delayed- no timescale on the delay even though I explained the situation.
I was on the point of walking out when Doc turned up
And I am getting no aftercare/ help with hubby after the operation unless I pay for it at £80 a week which I just haven't got. I was told they would not do the hip op unless care was organised
(this even though i have to sit on the floor to wash hubby as I cannot bend for long) so I am booking the care and then will cancel it when I come out.
The system for carers is heartless and inconsiderate.

I have just been sent a link to this thread because right now my caree is in hospital. They planned to discharge him today. He has an out patient appointment at the same hospital for tomorrow so I think they kept him in overnight for that. The next discharge was to take place after the appointment tomorrow but that has been changed again because I had already been contacted by The Complaints Manager prior to the caree going into hospital I think. I had made the point that I am in poor health myself and approaching 60. I am also a small person and I am frequently expected to take my caree home. He cant walk more than a few steps and although there are wheelchairs to use in the hospital there are steps on the path and from the path into the house and no one to help me. I have proof that my health is severely affected by the constant discharging of my caree despite his poor health. We have had the caree discharged and back in hospital in 7 days with the same complaint. I have BP recorded at 201/104 on the day of discharge but whether that is anger or fear I dont know. I have asthma, pernicious anemia, high cholesterol, high blood pressure, had a stroke and threatening heart attacks. Family history of heart attacks and strokes. I also have Post Traumatic Stress Disorder perhaps due to having to tell people there is something wrong here and them not listening and then there is a disaster necessitating urgent action which would not have been needed had I been listened to in the first place.

The caree is very elderly with heart and kidney failure, other organs removed, skin problems and even MRSA got the hospital which will not listen to me.

The end result of all this is that the caree needs more and more treatment the carer is also needing treatment as a result of the stress of watching what the caree is going through. It is unnecessary waste of time money and resources and all because hospital staff could not possibly listen to someone who may not be medically qualified but does know the caree/patient.

Communication is awful. Tonight they said the would give me the Consultant's phone number for an appointment but never actually got round to it. The nursing staff claimed that the caree walked perfectly well today. The caree denied it and claimed he was breathless another patient joined this conversation and stated that my caree was in a bad way just trying to walk to the toilet. The nursing staff are not observing the patient properly and are lying to the relatives. This does nothing for me to trust the medical/nursing profession. I could say a whole lot more but I dont have time to mention everything even the administering of medication the patient had severe reaction to several times and still the administer the same thing.

Little Lamb

Just seen this post and thought my experience would help. I have 2 young children (8 and 9) both with ASD. I was diagnosed with arthritis in my spine in May after years of pain being dismissed by my doctors (i NEVER see the same GP twice!) as just ordinary back pain due to all the lifting and carrying I have to do.

Despite at all my appointments telling the doctors that I have 2 children who need 24 hour care, I have never been offered a choice of appointments, respite cover etc and as its the summer holidays I've had to drag them around to every appointment. I have an appointment today with the specialist and it looks like I've got to take them with me again. Not only the physical problems of getting them around with a bad back, they have obviously picked up on the discussions and my son is convinced I am going to die, so I have to constantly reassure him. The fact that I am a carer has been given NO consideration and I have just been expected to get on with it.

Surely it is cheaper for the NHS to have a carer who is able to care rather than what I am dreading that my condition will worsen and I will need to get the social services involved?

I am utterly shocked at reading the above. I am a carer and am so scared of The NHS, & they have no understanding of how scared people can be with anxiety. I am looking for private care for myself, so I know that if I need to ever use it, I will get better treatment as I simply shudder at the thought of the NHS. I had heard of a close friend, who was woken up one morning & told to go home and go & wait in the freezing cold hall way of that Hospital in her nightie. What is this wretched NHS playing at? This is really insane!! And an utter disgrace. As a carer if ever I get taken ill I will kick up a fuss till I get a result. I will not suffer fools gladly after all I am saving this country thousands by caring in the home. regards Amandah
My caree has been very frail for years, it's a sad tale of endless demands for me to care at the drop of a hat, despite the fact that I also had a son with severe learning difficulties. One particular week sticks in my mind. Father in law to have a colonoscopy, at the last minute was told he had to have "someone" with him for 24 hours. That meant he had to come and stay with us overnight, endless getting up and down to the loo all night, no sleep for the whole household. The next morning he went home. Later, I complained to the hospital, who told me if they'd realised that he lived alone he could have had the first, rather than last, appointment of the day. The next day, mum had a carpal tunnel operation, she thought she'd be staying in overnight, but only after I'd taken her in did I discover she would be discharged the same day. Since she walked with a Zimmer and would have her hand in a sling afterwards, it was clear (to me at least) that she wouldn't be able to cope living alone. The sister of the ward told me I HAD to look after her until she was better!!! After an immediate formal complaint, she stayed in overnight and emergency support organized. The next day, my son came home and we went to a steam rally (my son's only hobby, a long planned trip). More recently, mum was admitted to hospital as an emergency on Christmas Eve. No one told me (I had to dial 999 to find out what had happened!!!) The admissions nurse wouldn't tell me anything, but wouldn't ask mum if it was OK to talk to me. Another immediate formal complaint. 3 weeks later she was discharged and then readmitted within 24 hours. I told the hospital she wasn't fit for discharge, but no one listened. On readmission, her notes were not available and I had to explain why she'd been in hospital for 3 weeks. Badly dehydrated, there wasn't even water in the room for her to drink. On discharge, none of the aids ordered were available. One took ten MONTHS to arrange. I've been mum's carer for over 40 years. Mum has an interesting view of the world. Says she has good eyesight but can't read the TV menu! No one wants to talk to me, to find out what life is really like for mum. When I finally saw her consultant, he saw my visit as an opportunity to tell me things. Listening to what I said was not his job. He and the OT department had real issues between them, patients and carers were merely pawns. Mum's last admission was weeks longer than it needed to be as a result, and she came out worse than when she went in. I'm so afraid that if she goes into the same hospital she won't come out again alive that I'm prepared to hire a private nurse to avoid further admissions.
Hi Amandah

I kicked up one fuss after another. I have threaten to sue. I have proved my illnesses coincide with what happens to caree. Caree was in hospital Novermber 2011 and a nursing sister told me he walked perfectly fine and she saw him when bed bathing a patient. So I asked have you x ray vision to see through a curtain or do you bed bath patients without curtains? Next things the same sister demanded the keys to my father's house because she was discharging him. I said you will have to fight me for the keys. She said she would get a joiner to break into the house to effect the discharge. My father aged 86 was distressed with this and told me to give him the keys. He was discharge but back in hospital inside 24 hours. He then lost the ability even to sit up and was bed bound for about 6 weeks. Then aournd 20 December 2011 I was told that they were discharging him again. I had already been told by two Consultants that IF my father survived this illness he would have to go into a nursing home. This was a staff nurse over ruling a Consultant! Where did see get her big ideas from? On 2 January 2012 I was told that my father would not survive this illness. On 7 Janaury 2012 a nosey neighbour was seen in the hospital with every intention of visiting my father. I had told her not to visit my father as he was too ill. I told staff I did not want this woman to see my father. My father had moved into a single room by this time and the only way she could attempt to visit him was if staff told her which room. I had heard them saying "Yes that room" so I put my foot against the door. I had already drawn the curtains so no-one could see in the room. This woman pushed open the door but as I had my foot against it she fell. The nurse accused me of hitting her and or pushed her. I didnt if I had I would have made a better job of it than her dropping at the door. This woman is over 80 and walks with a stick but nursing staff would actually use and old woman to cause distress to a family who had been staying in the hospital for 2 days with their dying relative. These nurses laid hands on me and tried to haul me out my father's room. I had Power of Attorney and if I say no-one sees my father then no-one does. These nurses use old people to cause distress and ignore legal documents. This was at 14.30 on 7 January 2012 and my father died at 9.25 on 8 January 2012. I then instructed the ward that the family were all gathered and therefore no-one needs to be told. My father 's birthday would have been 12 January 2012 and I received a letter from the ignorant neighbour who had been told not to visit advicing me that she heard my father had died. Clearly there is no comprehension of confidentiality.

I dont know what nurses are these days. The next door neighbour is training to be a nurse - she is 30 with a 14 year old daughter so make your own calculations, she has a tattoo. For the 10 years she had lived in this street she saw me in and out my father's house several times a day. She does not ever speak to me now. I think nurses are the major problem here. They now have degrees but not an ounce of humanity and definitely lacking in caring. Consultants should come down heavily on nurses who countermand their instructions.

I have made complaints but they deny everything. There are more NHS staff than there is of me. If they were not so determined to deny all to save themselves being sued they would not be sued so often. It is the ignorance that causes offence. I have since added Coeliac's disease and Rheumatoid Arthritis to my list of illness all diagnosed in May 2012.

What is wrong here is that the NHS are brain dead that they cant see that if you damage people with stupidity you will create more invalids. Face your responsibilities and admit when things go wrong and learn from them. Until them there is going to be no trust by the public in the NHS (Sorry for the rant - it still infuriates me)

Little Lamb
Sorry a quick PS

Now that I am the old one I am moving house because I would rather be in the care of the local prison/zoo/bouncers than be in that hospital. It was the same when my mum was ill and dying 10 years ago. They were hopeless then and they are even worse now. The staff are barely human with their conduct. Animals take better care of their own than that hospital. It is shocking but I just do not feel I could cope with even the possibility of being in that place. Dont suppose the NHS is any better any where else but definitely dont want that place. I might try private too or maybe that is what they want us to do, so see a lawyer and take legal advice if you can sue for their failures.

Little Lamb