Lack of mental health support for carers?

All about caring
21

Thank you so much for your response. I feel so desperate, alone and afraid.

I do have lasting power of attorney - the hospital and council know that (have seen the papers).

It was the Chief Exec who wrote to say my father’s prognosis had changed and that the hospital were not now pursuing a fast track NHS Continuing Healthcare funding for either access to a hospice or increased care at home. The letter I received on Thursday said that once Dad is home the council will undertake a CHC Assessment. I’m afraid I just don’t trust any of them anymore. We asked for a CHC Assessment to be done in July but the council simply didn’t do it. I am scared they will send him home on his existing package and we simply won’t cope.

I also just want a dr to tell us what his prognosis is - the last said three months, the letter said he had improved but not how (he looks exactly the same to us- not talking, eating, drinking - just sleeping). Is he now likely to live for longer?- what you could do/put up with for three months is very different to say a year…

I have complained to the Chief Execs office and they have acknowledged the complaint but I’m worried they-are just going to try and send him home. My Dad’s MPdoesnt have a surgery until Friday. I have taken all the flat keys. Not sure what else I can do? Am I being unreasonable?- they all speak to me as though I am mad but I just don’t seem to be able to get them to understand my concerns.

22

Faye, make sure they know that access is being denied. I had to do this for my mum too. I’m so concerned for you.

23

I too had a lot of issues with the hospital discharging my carees with little or no extra care support.

The hospital wants their bed back asap, so once the patient is medically fit, the patient is sent home with appropriate care.

If you look on the internet, Hospital discharge rules.

The care must be arranged BEFORE Discharge.

The discharge to home is a new idea, that many patients are stuck in hospital, do not need to be /do not want to be in hospital

Bed blocking causing many issues for the hospital, including financial.

But this is clearly a more complex case than just say a sprained ankle.

It is not the Council that do an CHC assessment, it is an NHS team that carry out CHC assessments.

Which should be DONE BEFORE DISCHARGE.

You have power of attorney, you are the Next of kin, the hospital should be consulting and talking to you every step of the way.

Involving you in discharge meetings so you can have your say and chance to talk.

The hospital just don’t have the time to care and skip the proper rules which are made specially to help the patient and relatives.

Every Hospital has a PALS, Patient Liason Team, can you contact them, you are right you need to know what is going on and your dad needs the proper care not just sent back home on the existing package.

Ask for an urgent meeting you want to know what is going on with your dad.

24

Thank you so much for taking the time to respond.

I have asked for a meeting to discuss his prognosis. I would like time to consider and understand what they say before agreeing to next steps on care. If , for example, he does only have three months to live then we might want very different care than if he say has a year: does that make sense?

Sorry I’m so tired and emotional , and they act like I am asking for the impossible that I just don’t know if I am being reasonable - I think I am but they make me doubt myself (there is so many of them and just me…)

They have said no - they want a full MDT mtg (lots of them just me - I can’t get an advocate) to discuss his care plan. I’m worried I’m going to be pressed into allowing him home on the existing care packages with promise of a new CHC Assessment that never materialises (hospital say it’s for the council to do and vice versa - the same happened last year). I would break. I also need time to process and understand what they are saying about my father’s health - it will be emotional and to honest I don’t know who to believe. …

I’m now wondering if the prognosis hasn’t really changed and they just don’t want to pay for anything? I don’t see how a consultant who has seen him once (and whose name they won’t provide) would really know more than another consultants whose care he has been under for two months. If it has changed why won’t they just pop by and tell me? I’m sat here in the hospital every day…

25

Hi Faye, I’m very glad other forum members have responded in this very unfortunate turn of events. It is understandable that you may begin to question yourself but try to stay strong. You are doing what a caring diligent daughter would and you deserve answers. And you are entitled to answers, having POA. Hospitals are well versed in their systems and policies, and you are not and I think this plays to their advantage.

One thought I have is that the hospital is claiming that the infection is now under control with oral antibiotics and the constipation is being managed by laxatives. The kidney failure hasn’t improved (I’m no medical doctor!)

My mother was sent home on the basis of her infection and constipation was controlled, even though she had delirium, cancer and was readmitted the next day. They said she was ‘frail’ but not deserving of CHC.

I just wanted to share my thoughts and experience with mum so you may have time to consider that possible response should you be told that at the meeting. xxxx

26

You should BOTH have advocates. Why can’t they provide them??

I wish I lived nearer so I could support you at this meeting Faye. Could you invest in a voice recorder. Someone I know got one from ebay for £20, and was very pleased with it, when she recorded meetings with SSD.

27

I attended quite a few meetings with hospital staff, hated it, sometimes 4 experienced trained staff and me used to work in a shop.
I stood my ground gave them what for but clear they weren’t interested in caree, unpaid carer rights.

Have a look at the NHS Constituation, you and your dad have the right to know what is going on, you have the right to a second opinion.
Has your dad been fully assessed, what they should be doing is taking your dad home for a QUICK Visit, assessing whether extra equipment is needed before discharge.

Have you anyone who can go with you to attend the meeting, good friend, close neighbour, an extra pair of ears is always useful?
And should your dad be going home, does he need to go into a care home temporarily?
In the good old days, they used to have Cottage hospitals, instead of going home, you went to a cottage hospital, a bit more care and support before going home.
A lot of these have been got rid of now.
Did it say in this thread your dad needed night care? in which case this needs to be set up and provided.
The hospital can’t just send him home with 3 day visits when he needs night care.

28

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.

29

Faye, I hope someone with more experience than me comes to advise you soon. I have not read all of your messages but I know it is an ongoing saga.
I am an excarer and have not been in your situation. My feeling is that you cannot possibly pay or be made to pay the top-up. You personally are not liable at all. I have no idea what your father’s finances are but only they are relevant. Can you refuse to have him back at home?
I wonder if you could talk to a hospice since it appears it may be appropriate, although the hospital say not yet. Maybe the hospice management would have experience of your situation.
Have you made it plain to the hospital that it would be an ‘unsafe discharge’? Is the PALS department informed?
I agree with you, they cannot just throw everything at you. It is awful being in the centre of these things and seemingly the only person who understands the difficulties. I hope you can sort it out.

30

Faye, their proposal is ridiculous! They all need shooting, to put you through this endless stress.

CHC is actually administered by the local Clinical Care Commissioning Group. I suggest that you now bypass the hospital and talk directly to them. Google should find them, if not the GP surgery would know.

I’d also check with the hospice, our local hospice doesn’t just deal with patients in pain, but anyone nearing the end of life.
NO TOP UPS ARE REQUIRED. CHC should cover anything and everything dad needs.

It’s all laid out in the CHC Framework.

31

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.

32

Sorry they are messing you around. I’m afraid I dont have any experience to offer re. CHC.

33

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.

34

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.

35

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.

36

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.

37

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?

38

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.

39

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.

40

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.