Thank you for your support and responses. My father’s solicitor has been great- it just all takes such a long time. She’s very confident that everything we are asking for is reasonable and that the hospital and social services are acting unlawfully. Unfortunately she says this is happening more and more - especially with reductions in legal aid and reducing oversight local authorities aren’t always adhering to the law and are playing for time (especially with the old and sick). It’s all a bit depressing but suppose we just have to plod on. I did email the Guardian in a moment of extreme desperation but didn’t even get a response. I’m not sure whether I’m just not describing what’s happening well enough to engage people? The solicitor said she thought the hospital, having admitted negligence, were just expecting legal action and so making no effort to resolve things. Unfortunately legal action can, I understand, take years which my father just doesn’t have. It’s all very sad.
Thank you for all your kindness- it means such a lot to know I’m not just in my own. Thank you
Faye,
Are you taking photographs of dad - covered in blood, for example??
There seems to be some sort of disconnection, that the ward seem to have forgotten that their own hospital caused dad’s problems, so in my book that should mean that he has gold plated treatment and everything possible done to help him, and make sure he is comfortable and well cared for at all times.
I would also suggest that you try to take names of the nurses if some seem to be neglecting their duties. Registered nurses must work to a good standard, and in extreme cases, can be struck off the register.
Are you being too nice to everyone?? i’m not saying get angry, just more assertive.
When my mother was deemed medically fit and whilst the care package was being reinstated, she was moved to a different ward, literally a holding bay, filled with other medically fit people waiting to go home or to care homes. There were fewer staff on this ward, mostly agency workers and altogether a lower standard of care and responsiveness. Worse staff attitudes too!
Rather than being given kid-glove treatment, or even standard care, might your dad be receiving a lower standard of care instead? Keep good, specific notes with names of staff, times, etc. As I saw with my mum, when she was given no PT, exercise of any sort and left in bed 24/7, deterioration was pronounced.
Thank you. I think my Dad is receiving a lower standard of care as they think he’s stable (not a matter of life or death and they are too busy to attend to his personal needs such as toileting, putting in hearing aids or washing and dressing). I know that he is declining- it’s only me that visits : if I’m even an hour late with work I can see that he is more confused. The hospital suggested I pull together a rota of family and friends to help with his personal care - but to be frank after years of his ill health no- one is interested! All very scary/lonely.
Even when I try to be assertive about his needs I’m not listened to - it’s just not what they are set up for. I did write to the Chief Exec and was told we would get a response in 40 working days : but nothing! I have flagged the case to the PHSO but again nothing/ the wheels seem to turn very slowly on Complaints.
I’m off to his MPs constituency surgery- fingers crossed she takes an interest! Thank you.
I met with my fathers MP on Friday to discuss his position. She seemed sympathetic and said she will write to the council and CCG to encourage them to try to work more effectively together and get him discharged. We shall see.
I’m afraid both my father and I are on a bit of a downer at the moment. I can tell my father is feeling down- he says he’s ‘having bad thoughts’, wouldn’t eat tonight and was very restless. I took him out over the bank holiday which perhaps was a mistake- it showed him what he is missing. He pleaded with me to take him home but as we don’t have a care package in place I couldn’t. It feels like he’s a prisoner - but to top it off they are giving him dialysis!!
I seem to alternate between being so angry and crying. Just feel helpless. I don’t think people, who aren’t carers, understand the bond you can develop and responsibility you feel when someone is so utterly dependent on you. When you have to wash, dress , toilet, feed etc the person you love. To see them treated so unfairly and there’s nothing you can do is literally heartbreaking. It’s making me question everything in life. Just feel really alone and without a way out. It truly is heartbreaking. Oh well as my father used to say I need to try and find the positive. Hopefully he will have a good sleep tonight and I can take him out in the wheelchair tomorrow.
Thank you for listening to me. I’m sorry for offloading.
I hope you don’t mind my posting again but I’m really struggling.
Recap- My father has been in hospital since patient transport broke his arm on 28 December. The driver has admitted negligence, been sacked, got a new job and we will (eventually) pursue a personal injury claim to help with my fathers additional care needs (can take up to 3years apparently).
Although medically fit for discharge since January my father is still in hospital. The hospital OTs say he needs double handed care - the Council (who would pay as he has no savings left following many years of care ) say it’s too expensive to provide this even temporarily as recommended and they can’t identify any carers (we are in London). My father just wants to go home. It’s 5 months now. His health is deteriorating- he’s in bed over 20 hours a day, they don’t have enough staff to take him to the toilet/ shower him etc. The hospital say the discharge is all resting on the council.
I went to my MP to try and get this issue resolved. The MP wrote to the Council who wrote back tonight. Astonishingly they are claiming they have only recently been told that my father is fit for discharge (we have attended many meetings were this has been explicit). I have also been told unofficially by the Ward Manager that the Council are still saying they can’t find any carers to help him. I have been to just about everyone (MP, Ombudsman,CQC ,PALS, formal Complaints, my GP) and just don’t seem to be getting anywhere. At times I feel so angry (watching him deteriorate before my eyes is awful) and at other times I’m just brokenhearted. I don’t know what to do now. All my family and friends have lost interest long ago and I know there is support from Samaritans etc ( the latter told me to come here!) but I’m just feeling broken and don’t know what to do next. Any suggestions? Thank you
Hi Faye.
Short of taking legal action … a Writ for instance ( Highly specialised area ) … or approaching the news media ( Beware
of them using you ! ) … little else springs to mind.
Something that breaks open the impasse … and simply cuts through the bureaucracy !
Needless to add , our thoughts are with you and your father … and always have been.
I would tell the hospital and LA that they have until the end of next week to sort it out, or you will go to the NATIONAL press.
I had to do this once, years ago. The Leader of the Council was already aware of how determined I can be, when I won a battle against a waste recycling centre which would have sent 120 lorries past both our houses, he even spoke at the planning meeting on my group’s behalf!!
He told the officers concerned that they MUST meet me at MY convenience, and they did!
Thank you for your kind words. I think I’m just exhausted and broken- I can’t stop crying. I’ve seen my GP several times and am on medication now but until things with Dad are resolved I’m not sure how i’ll pick up.
Being a carer is so hard and so lonely. I keep feeling like there must be something wrong with me. All I want to do is look after my father and work but it’s just not possible. All my friends and family seem to have drifted away (I suppose it’s dull and relentless - the problems just never stop). Adding to that the shocking response of some of those who are meant to help (I can’t believe that the Council have simply lied to my MP). It just makes everything so hard and overwhelming.
I am very grateful to all those on the forum. It’s so lonely and hard being a carer. I’ve never felt so utterly useless! Thank you for listening.
Faye, you are NOT useless, you obviously love your dad very much and want the best for him, he’s very lucky.
You say that the council have lied to the MP. What did they say?
There are remedies for this sort of situation which could have serious consequences for the people concerned.
As you are “having difficulty making your voices heard” you and dad should EACH have an advocate, under the Care Act.
Are you having any counselling, which I’m sure would help you, and leave you feeling less isolated?
Tomorrow, try to concentrate on doing something that you like doing, for yourself, and your own wellbeing. A walk in the forest, on the beach, lunch at a garden centre, anything that lifts your spirits a little.
I’m sorry to bother you all again but really need advice.
I’ve just been called by the social worker who has said that they have found an agency who could provide care for my Dad at home. Unfortunately they have said it’s not an Agency we have used before (there’s one good one we wanted but they say they can’t provide double handed care) and we will have to stop using the carer my father has employed through direct payments for over twenty years. I’m really worried. My dad has a good relationship with his carer who knows him well. Our experience in the past of some of the agencies the council have sent has been awful - the carers haven’t turned up, haven’t spoken English etc. I’m really concerned my dad is very vulnerable and I feel we have some sort of obligation to his existing carer but I don’t know what if anything we can do. I do want him to go home but he needs appropriate care.
Hi Faye
So, if I understand correctly, Dad now needs double up care and the Council have now found an agency and agreed to this, so he doesn’t have to go into a Home, yet you still want him to have single handed care from someone he knows?
Could that person be employed by the agency?
Have the council said direct payments must stop? Surely the payments have stopped while he is in hospital?
Has the carer been being paid all this time?
You’ve fought so long to have him come home, would it not be worth it to try this new agency? If you refuse what else can the council do except look at residential?
I understand your concerns and that it may be a risk, but what other option do you have?
Sorry if this sounds a bit harsh but I think you’ve got so stressed (understandably ) that it’s difficult to make decisions, (perfectly natural in the circumstances ). Even if it doesn’t work out with the new agency at least he and you will have tried him at home. If it does work, good!
In view of dad’s vulnerability surely continuity is vital, so the long term carer should be used to train the others about how he likes to be treated???
Thank you for your responses. I have been paying my Dad’s long term carer whilst he’s in hospital- not as much as she would normally get but she’s been very good and didn’t mind.
As Mrs Average says (thank you) I think we will have to go with the new agency. I think they are being paid for by the NHS for the first few weeks and the situation will be reviewed although this hasn’t been said explicitly. The care plan mentions therapy goals - some of which he has to meet in one or two weeks but which he hasn’t actually done for years (like independent toileting). I’m not sure if this matters?
Given how vulnerable he is after such a long stay and the complexity of his needs it would be good to keep the old carer involved - I will ask. The new care plan also fails to mention night care. I assume they think I will do it - his need for this has been fluctuating but hopefully once he’s home he will pick up and it won’t be necessary after a couple of weeks. Fingers crossed. It will be hard to help him at night and work in the day. I might see if I can take some annual leave (notice may be an issue).
It’s fair to say I’m not really thinking straight at the moment. The last six months have been so distressing and my diabetes and blood pressure have gone mad. Hopefully things will pick up. I’m just exhausted. Thank you once again for all your help and support.
I would agree with MrsAverage. I don’t think you can afford to be too fussy. Its not as if the solicitor or insurance has come up with a pot of money to pay for the care. Continuity has already ceased and doubled up care seems as rare a commodity as hens teeth in your area. If your father needs 24/7 care then that could be a problem.
Thank you for your kind and helpful responses.
We had accepted the proposed package of care and were told my father would be coming home yesterday. At 4pm I received a call from the hospital to say they had decided that because of his reduced mobility (he’s spent over 20 hours a day in bed for the last five/ six months) he can’t go to his usual location for dialysis. The place they are proposing he goes to is an acute unit so he won’t get set hours for treatment as they have to attend to emergencies. This will make his care plan impossible to work - the Council have very set hours for carers but the hospital want him to be flexible about when he goes for dialysis. I just don’t know what to do. I have explained the issues to both but they just don’t seem to care. The nurse at the dialysis unit said if I love my father as I say I do I will care for him at home but I am supposed to work. The council just say the agencies can’t be that flexible. I just don’t know what to do. I feel broken. I know I’m not thinking straight but I’m exhausted and feel so helpless and alone.
I dont have a good answer regarding the dialysis. The dialysis nurse was pulling on your heartstrings as many people, who think they know better, often do and quite unnecessarily in my opinion.
Is your father having any physical therapy to help strengthen him and get him moving again after his prolonged period in bed?
I would make a formal complaint about the dialysis nurse who said that, it’s completely out of order. She has tunnel vision, only seeing dad, not bothered about anything else at all. She has an urgent need for further training. If dad can’t come home it’s up to the NHS, through Continuing Healthcare, to sort this mess out. Not you.
Thank you for your advice and support. The NHS have said they won’t consider doing a continuing healthcare assessment on my father until he has completed six weeks of reablement at home (the double handed Care). Dad’s solicitor has said this is wrong and it’s part of our complaint. The hospital have offered to meet with me on Friday- unfortunately no one is available to attend with me. Neither the solicitor nor the advocate have capacity (they both say they are close to meltdown with the number of cases they have). I don’t have any other friends or family able to help me- so will have to do it alone. I’m very very anxious about it. Has anyone else done something similar on their own? Thank you