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Lack of mental health support for carers? - Page 4 - Carers UK Forum

Lack of mental health support for carers?

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Faye_1506 wrote:
Thu Feb 13, 2020 10:39 am
I’m sorry to bother you but need some urgent advice and have nowhere else to go.

The hospital have confirmed today that they are submitting a Fast Track CHC application for my father as they think he has less than three months to live. However the care plan proposals are unworkable and they want me to agree to them today. Nightcare is a particular problem- he needs help toileting (he’s doubly incontient) , turning (now bed bound), with pain medication, drinking etc yet as they say the CCG won’t pay for night care are just proposing one half hour visit between 6:30pm and 7:30am. This just won’t work. I don’t know what I can do - I can’t work and look after him at night. I will collapse. Am I allowed to appeal or what can I do?

They have already said (after initially proposing it) that he’s not suitable for a hospice as he’s not in constant pain (the pain is apparently manageable through nursing care even though they are not proposing he receives that). They also said that we’d have to pay £700 per week towards nursing care which I just don’t have (Dad was disabled in his 40s). I feel so desperate. I just don’t know what to do. Any advice? Thank you.
No-one is under any obligation to care for anyone else, no matter what their relationship or past experiences and they are not obliged to pay either, any financial considerations are based solely on the person who needs care.

"They" will try it on, (all of them, but especially Social workers and Hospital Administrators) they will bully and cajole you in any way possible, you have to know your rights and be prepared to stand up for them.

Just tell them that you can't do it.
Sorry they are messing you around. I'm afraid I dont have any experience to offer re. CHC.
CHC does pay for night care, down the road from me is a very disabled man, he receives CHC and must get over 100 hours care a week, I take my dog for a walk at night see carers going in, I take my dog for a walk in the morning see the carer with the overnight bag going home.
The man is bedbound very ill disabled, but gets night care, district nurses, day carers, the doctor visits often, a massive package of care.

This is what your father needs a CHC package supplied and paid for by the NHS.

Like Rosemary says they are messing you around, you shouldn't have to pay £700 a week and if you don't have it, you don't have it.

To discharge your dad without the proper care needed would be an unsafe discharge and would probably end up very soon your dad ending up back in hospital.
Thank you so much for your kind responses. I’m afraid that I’ve been really pathetic today - I just can’t stop crying and alternate between feeling really upset and scared. Dad has been in so much pain today but the nurses have been too busy to issue the prescribed medication - in the end , after over four hours , I got really upset and they have now actioned it.

I need to be much stronger to support him through this time - it’s just so hard when I can’t stop crying. Hopefully tomorrow will be a better day. I am sorry for complaining so much.

The hospital have given me a draft of their fast track CHC application and care plan. They have said that if I think he needs more care, especially at night time, I need to better articulate his needs. I’m just finding it so hard to do this. He needs help with everything - he can’t speak, is in pain, doubly incontinent, not eating or drinking etc.in Hospital he has a special with him 24/7 but they think he can be left at home alone for hours - they must know he needs the care: one of the nurses asked again today if I will give up my job to care for him. If I did I would have no way of paying my mortgage and no where to live ( Dad is in a one bed room warden controlled flat). I also don’t have the money to top up nursing home fees so he can stay close to me . I feel broken and like I’m letting him down.

I just don’t know where to start and feel under so much pressure to get it right and quickly. It’s terrifying.
Faye, you NEED to cry. It's all too horrible. All that emotion needs to be let out, you just can't bottle it all up.

Nurses too busy to administer the pain control for four hours? Utterly unacceptable.

If he has a special 24/7 why didn't she sort out the medication???

If that's what he's having in hospital that's what he should be having at home, it's as simple as that. In any case, CHC isn't coming out of their budget, their patient getting what he needs should be their top priority, THEY should be advocating for him, it's not what a carer should be having to do in this situation.

Maybe time to name and shame the hospital. Have you seen their latest CQC report? I suspect you aren't the only one who has had problems like this.
I had exactly the same problems with my caree, in and out of hospital, had head injury, dizzy disorientated, was told by the hospital to ask the nurses for help going to the toilet.
Guess what nurses too busy, was discharged as needing night care but no night care was provided, I went around for weeks doing night care until he was stronger.
And he kept asking me to smuggle painkillers in to the hospital , was in pain all the time but first thing they lock all your medication away.
You ask one nurse then another nurse for painkillers just too busy.

As Bowlinbun says if he has 24/7 at the hospital then he needs that home at home, you cannot look after him 24/7 just not possible.

And from the sound of it he needs specalist nursing which of course you cannot do, you are not a nurse.

It is not your job to articulate his needs, there is a whole team of medical professionals who are supplying and know his needs.

He should be assessed before discharge , he should be seeing an O.T and discharge team AND you should be involved in this and have your say.

And if he has less than 3 months left to live that's Palliative care, a Palliative care team to work out and supply what he needs.

AND it should be his choice, does he want to go home, die at home, does he want to go to into a hospice?

Hospices are for people at the end of their life.

We have and are allowed choices now.

The hospital are behaving abominably in this situation.
There's no need for him to be in pain. Might you suggest that he be fitted with a syringe pump to deliver his pain meds automatically?
Thank you so much for your thoughtful responses - it means so much that I’m not completely on my own.

The CQC have assessed the hospital as requiring improvement - I have emailed them my concerns but just get a standard acknowledgement. My father’s MP said she had heard from a consultant in the Childrens Intensive care unit saying they had concerns that the lack of staff was leading to poor care /more risk taking than would usually be the norm. I think it’s known in the media that the hospital is having financial problems.

I would, and may well end up, complaining to the Ombudsman although that probably won’t help my father /be too late.

I agree that the hospital professionals should be explaining his needs but they just don’t seem to care/ to do it. They suggested he should go into a hospice - we agreed and now the Palliative Care Team won’t agree (say three months is too long/ he has symptoms that could be treated at home with adequate nursing). My father has always wanted to die at home and I simply don’t have the top up fees that would be required to get him into a nursing home near me/my work- even if one would take him. That has left us needing an increased care package through Fast Track CHC but the night care is proving a particular problem. They won’t provide it and I can’t do it and work.

I have no clue how the CHC process works - how to describe the needs of someone who literally can’t do anything. Last night I was with him until the early hours. He can’t speak, take medication , eat or drink. He was just thrashing around in pain and incontinent. It was awful.
I’m so scared about getting it wrong and letting him down. It’s literally making me sick with worry - not sleeping and constantly feel sick. I’m sorry for complaining.
Faye, I don't see you as complaining, just desperately concerned for your dad.

The Palliative Team clearly haven't grasped the fact that at the moment there is no one at home to help him which is WHY he needs CHC to give him "adequate nursing".

Now I'm going to suggest something very difficult. Google "Signs of Dying" and you will find some really well written explanations of how the body shuts down over a period of months or years.

From the way you describe him at the moment, unable to do anything for himself, he sounds like he needs to be in a hospice which is fully staffed. As the hospital are so useless, have you thought about asking to hospice to visit him in hospital to make their own decision as to whether or not he qualifies for their care. They may even have nurses available for overnight care in the community, I believe our hospice can offer this service.

Come back to the forum whenever you want, and we will try to support you. You are a wonderful daughter. Don't ever forget that.
Faye
You are not complaining. A daughter who obviously loves her dad very much. He has a right to be treated with respect, be as comfortable as possible, and you have the right to know that he is.
Bowlingbun has often suggested to Google signs of dying. So I did, eventually. Obviously not easy reading, but am so glad I did. It helped me to understand when my lovely husband was reaching the end of his life. Helped me remain calm.
I'm always so sad when I read your posts, as you and your dad are being treated appallingly.