PSP Association
5,632 members7,691 posts

In need to rant!

Hi all

Well I feel like I'm in a living nightmare

Mum is still in the hospice, they wanted the bed back two weeks ago! Care at home can no longer be fulfilled. We were using a combination of direct employed carers and an agency. Agency served notice and one of our carers quit.

Currently the council have 60 care packages to fulfill and the CCG have end of life patients needing care that cannot be provided. Apparently this is the worst it has ever been locally, I was told by them both in a meeting last week.

So that leaves my poor Mum being forced into a home against her wishes and my wishes. They all want her in a dementia unit to add more salt to the news.

It has all got very politically. CCG and social services in dispute over the CHC review so that has been halted again. Hospice won't fast track and Community matron can't go over their heads as Mum is in their care.

How I bitterly regret making the decision for her to go into the hospice. They actually haven't done anything that couldn't have been done at home in the end medication wise and I've actually had to complain a few times on the care she has been given. They seem fab for the cancer patients though.

The nearest hospice didn't have a bed so she had to go to the other site in the county which has left me driving a round trip of 45 miles a day. I'm more exhausted than when she was at home. The stress of all of this hasn't helped either.

Mum is worried and scared and just wants to come home. There isn't any good homes locally either, alot are reported by CQC as "require improvements".

Universire I keep asking for help......

Thanks for listening all. I had to spill that all out as I feel like losing my marbles.

43 Replies
oldestnewest

Oh my god what a nightmare you are having, more than likely she would of had better care at home, so unfair all this stress is unnecessary to you both, I thought a hospice was a caring place? Hope you get it sorted out soon, big hug to you. Yvonne xxxx

1 like
Reply

Too right she would have been better cared for at home. She has though enjoyed the stimulation there and not fully aware of all that has gone on with the poor care. She now wants to come home though.

Reply

Oh Spiral, what a horrible scenario! I'm so sorry to hear all this :-( And, because you are in a completely different jurisdiction, I have no ideas or help to offer....

You would have had every reason to think that your mom would have been cared for properly to her end days at Hospice - and she had seemed so poorly we all thought she was very close to the end.

Can only offer you a big ((Hug)) tonight....XXX

Anne G.

Reply

The hospice said they are surprised she is still here but she has pulled through and whilst having some bad days , other days she is doing ok. They can't give me a prognosis as said too hard to predict.

Reply

Too true for your mom - she must have a very strong life force! Hang in there, Spiral ❤

Anne G.

1 like
Reply

Aww Spiralsparkle I’m really both sad and angry that your dear mum is in this terrible situation and that you have had to experience such stress! All I can suggest right now (its 4.45am) forgive me I’m awake but should be asleep, is that you contact your local councillor and or MP and ask for their help. This whole nightmare your both experiencing is an absolute bloody disgrace!! Hugs huge ones! X 💕

1 like
Reply

I don't think the MP can magic up a care agency unfortunately but I will I think fill them in on this nightmare when I have more energy and her whole story of last few years.

I forgot to write in post there was a temporary option of live in carers on Monday but we don't have a spare room and Mum didn't want her bed moving to living room.

Reply

I don't know what to say, you seem to be being let down by all the people who should be supporting you, all I can offer is thoughts and prayers. Don't worry about ranting that is one of the purposes of this group.

Reply

Thank you for your reply.

It certainly does feel like let down by the professionals indeed.

Reply

Thanks for your reply, I just had a thought, sometimes when I am getting nowhere with authorities I ask for a copy of their complaints procedure, it sometimes works as if you do make a complaint using the procedure (which they have to have) it will be seen when they have a CQC inspection.

1 like
Reply

Ok thanks for that. I'm not sure that would be helpful at the moment as may just get hospice backs up more. I have though already thought about going directly to CQC about poor infection control measures I've witnessed there.

Reply

I fear that If you complain to CQC they will ask have you complained to the hospice, you could I suppose use the excuse you didn't want to get their backs up. I was interviewed by CQC inspectors on their inspection of a previous care company and in their inspection report they repeated practically my every word, as I read it I could hear myself speaking. The report was so bad I asked to switch companies which we did.

Reply

I have complained previously to CQC about a few agencies. They have taken note and used it for future inspections. Even though CQC really is just a tickbox exercise and not a true picture of an organisation.

We've experienced awful care from agencies who are deemed "good" by CQC

Reply

True. You get poor agencies who get good scores because they are good at ticking boxes. And agencies who are good at care but rubbish at administration.

Such is life. Wishing you success in finding the right care for your Mum.

Ken

2 likes
Reply

Thank you. I keep praying to the universe.

Reply

Oh, Spiralsparkle what a nightmare!

First off... Don't get put off by statements that the Council have a backlog, or the NHS has more priority cases etc. Though many of us have compassion for others needs,it puts you on the slope to not receiving the care to which your Mum is legally entitled.

There is a shortage of resources. If we all back off there won't be and few will get the care they need and the pressure is off the the services to push the government for more resources.

Your Mum can't receive a package from the Local Authority if she is eligible for CHC. It would be unlawful for them to provide one and it is legally beyond their competence if she is eligible for CHC.

So getting down to basics.

The Hospice must keep her until a suitable placement or resources for home care is found. (Again - let the Hospice put pressure on the CCG to arrange a suitable placement or home resources).

As for a dementia unit: These vary considerably from those who have high numbers of disturbed patients with behavioural problems to those which are quieter with more bed bound patients. Dementia units generally have higher staffing ratios than Nursing Homes, so that could be a plus. However my main concern is that if your Mum is active she may possibly find herself in a 'bedlam' of confused folk which will be very demoralising for her.

Additionally there is a serious concern of a PSP patient who can't walk or move their arms much being hurt by a physically active dementia patient with behavioural problems. Don't take reassurances such as "Oh, the staff will be watching." They cannot watch all of the time. You need a sound risk management plan on paper that you believe is adequate.

Stay calm and hold your ground. Let them do the dancing and shouting, but make your position clear.

As for Nursing Homes. I'm a little confused here. If the Hospice are surprised she is still here, does she not need 24 hour nursing now? If so the CCG may argue that going home isn't tenable.

You might want to visit the two most likely Nursing Homes in you area, arrange a visit. Go at lunchtime and see the food too. Ask about end of life care and get a feel for the place. Again there can be high levels of dementia cases in Nursing Homes, so describe your Mum's condition and ask if they think she would be suitable in their environment. If the CCG come up with a placement go and visit it first before agreeing.

It's such a fight isn't it?

I hope something in this post is useful to you.

Do try to get sleep!

Warmly

Kevin

3 likes
Reply

They have all said her needs can be met at home.

She is remaining as joint funded and social services are the case manager. CCG haven't helped apart from say needs a dementia unit. I've been to one this morning who said not appropriate and sent me to their other nursing site, that I wouldn't board my dog in. It was horrible. I've come away in tears. I visited another local nursing home who told me no admissions for the foreseeable future and got me out the door quick!

Everyone is on my case and I'm close to telling everyone to Politely do one. You are making us do something we don't want and harrassing me daily.

I'm trying to act normal in front of Mum but I feel destroyed and she is worried and scared.

Reply

Hi Spiralsparkle

You don't need to hear this right now, but it sounds like she should be wholly funded by CHC. If she is getting full funding from Soc. Serv. this is irrelevant. If not you might ask the Hospice to request a DST for full CHC.

"destroyed, worried and scared" - It shouldn't be like this! You sound like you are keeping it together well.

How are they harassing you? That's aweful. It sounds like you need someone on your side.

Can the community matron give you support and guidance, even though she can't intervene?

Have you considered telephoning the PSP Association? They often have local reps. who can be very good.

It sounds horrific, but you really seem to be doing the right thing.

It's more than tough.

Strength to you

Kevin

Reply

There isn't a representative for our county.

Community matron still on holiday until next week unfortunately.

Hospice did a checklist and we have a review meeting last week that got halted as hospice assessment very different to home. cCg and social worker said they would be in dispute so meeting got stopped. Her behaviour at the hospice has been fine, where as at home is challenging at times. She is joint funded at moment. I think she meets the full criteria, hospice don't.

The hospice holds all the cards at the moment and harrassing me daily have I found anywhere yet.

I asked them to do a ADR as her wishes are going against the ACP by not returning home. I don't want anyone sending her to hospital from a home as that is totally what she doesn't want to happen. Got told she can't fill in an ADR and ACP is enough. The admiral nurse deemed her still with capacity on Monday so I asked why they can't do it. They didn't like it or me keep questioning them and pulling them up of poor care.

Reply

Hi Spiralsparkle

Yes, sorry, I remember now about the Matron being on holiday.

You sound very up to speed.

What are ADRs and ACPs please?

And did the Soc. Serv. say what the dispute was? Was it about the care plan or are are they saying your Mum's care is outwith their legal limit? Because it does sound as if it is.

You might also talk to the Social Worker and ask them if they think her care is beyond their legal limit. If it is then your Mum gets CHC anyway. A hospital DST is the same process as one done at home BTW.

Frankly in your shoes I would ask the Hospice to stop calling you and refer them to the CCG team. It's improper that they call you.

Best to you

Kevin

Sorry to bother you with these questions - ignore them if you want - you have enough on your plate.

Reply

Hi

The dispute was that the hospice assessment for some of domains was very different to how she is at home. Mainly the behaviour one so social worker wouldn't agree with the CCG nurse who was going on the hospice assessment.

I asked question in that meeting about legal limit and got told they work together now!

ACP - advanced care plan

ADR - advanced directive that is legal document.

They are going against her wishes in ACP of being at home so I do not want anyone sending her to a hospital , also against her wishes , as she won't be at home I won't be there to stop it as such.

Reply

Excellent Kevin.

Big Hug.

Luis

1 like
Reply

Oh my goodness this just goes on and on for you. Constantly battling. You must be absolutely worn out. I really feel for you.

Its disgusting that your mums wishes to be at home and your willingness to care for her at home are being ignored. I see that they have offered you live in care but that's obviously not going to work for you with you not having the space. Do you think that's why they offered it or am I just too suspicious?

I've said before although our situation is so similar we are not at the same stage as you yet. (God help me if we ever are) I think you have been given some really good advice from the good people above when I read your post my first thought was help from your local MP and then I saw that this was suggested above. I think it might be worth a try if you get really stuck.

Please take care of yourself

sending you a big hug

Lynda xx

Reply

I don't trust the system at all and suspicious of everyone.

I hope you never end up in this situation and have better support where you live than this county has in place for neurological conditions that are rare.

1 like
Reply

I am not surprised you have lost trust in the system you have been through so much.

I have nothing but admiration for you and just hope that your mum can manage to get back home with you.

Don't let them get you down easier said than done I know.

Hugs Lynda 🌻

Reply

Thank you x

Reply

Hi Spiralsparkle

I am in such fear that I might be adding to your current burden rather than helping. So please just ignore this post if your plate is too full already.

You are being given seriously incorrect information.

Joint funding is only lawful if the Social Services put the package in and have responsibility for the care and the CCG add in FNC - Funded Nursing Care to cover the Nursing element. Currently that is £156.25 / week.

It is completely unlawful for the two 'to work together' in the way they seem to indicate. It is unlawful for them to joint fund beyond the limits I have just described.

When social services were set up there was a need to create a line between them and the NHS. This was both to separate budgets and to have clarity with regards to responsibility. The term applied is the 'legal limit' for social services.

caretobedifferent.co.uk/nhs...

The key role the social worker has in the CHS application is to determine if the care required is within or not, that limit. Your social worker seems blithely unaware of both the law and their duty.

I would strongly suggest that you write to the Social Services team manager and complain about the advice you have ben given and ask that they write back immediately with their evidence based assessment of whether or not his care is within that limit. I know it's another chore when you are already pretty heavily burdened. This act alone might well unravel the Gordian knot. If the result is that his care is beyond their legal limit then full CHC is just about automatic.

I would add that I would also put in the letter that you are writing in this instance to try to resolve this otherwise you will place it in the hands of your solicitor.

Do come back if you want clarification or whatever.

I am so horrified at the situation in which you both find yourselves.

In your corner

Best

Kevin

Reply

My brain can't type a letter can I just put a line asking if legal limit?

Reply

Hi Spiral Sparkle

Can you build something on this?

Make a phone call to social services and get the managers name and address… They are obliged to give it to you.

PM me if you want to...

Good luck!

-----------------------------------------------------

Re: (Name address, NI No....)

Dear Sir or Madam

Please treat this letter as a formal complaint and an attempt to resolve what appears to be an unlawful response from your agency.

I am ***’s wife. *** has been in *** Hospice for * weeks. The hospice want to discharge him, but I am told that your agency is overburdened with cases of a higher priority and are unable to fulfil your legal obligations at this time. We have been offered a placement which does not pay due regard to risk or its suitability to his condition.

(*** put a brief para in here why there is urgency – e.g. he is languishing and distraught and the hospice are pressurising you to accept a placement when he wants to return home as per his Advanced Care Plan and Advanced Directive.).

I have been told that the Social Services are, 'in dispute' with regard to the DST scores which differ wildly form those he had when he was at home. This indicates a poor DST and it is not acceptable.

I asked the Social Worker involved ** (name her if you can) whether ***’s care was within the ‘legal limit’ of social care. She replied that it wasn’t relevant as both agencies now share care and funding. This is an unlawful position.

We need clarity with regard to which agency is responsible for care and funding so that we might progress to developing a Care Plan which meets his needs, mitigates risk and respects his wishes as stated in both his Advanced Care Plan and his Advanced directive.

1 Please would you look at my husband’s case as a matter of urgency with a view to establishing which agency is primarily responsible.

2 Please also clarify, in an evidenced based fashion, whether or not his care falls within the Social Services legal limit.

I have written this letter in an attempt to resolve this issue. Should you not be able to respond to these two requests in a timely matter you leave me no alternative, but to put this matter in the hands of my legal representative.

Kind regards

1 like
Reply

Mum is worried about it all but not outwardly showing to others this ,only to me but it is against her wishes

Reply

No worries. It has to be what you all want.

Maybe change the letter to s request for managerial intervention then?

Just edit out the challenge part, but I would keep in the bit about 'legal limit' just change that to a question.

Any good?

That is what managers are there for... and a request for information and intervention is very reasonable.

Best

Kevin

1 like
Reply

You are an angel.

I'm at the hospice currently but will get this letter done and in post in the morning.

Hugs

1 like
Reply

You are an angel for people on here Kevin 😇😇

1 like
Reply

You are the very best, Kevin - You help and share your skills and knowledge so generously 😊👍💞

1 like
Reply

Wow sweetie Kevin came through for you so glad 😊

1 like
Reply

Lynda

I am working on my grumpy old man thing... just not doing it too well.

I'm very shy y'know - embarrass easily- but so pleased I can help a little too.

Chuckles and waving.

And thanks

:)

1 like
Reply

Aww bless ya Kevin 😊

You always go above and beyond to help people on here. It's a wonderful gift.

Grumpy indeed 😄😄

Keep up the good work

1 like
Reply

Rant away you need to vent your anger somewhere I felt completely useless earlier this year with my mum every door I tried was shut in my face so I feel for you. We got Mum into a home 5 minutes away and they are lovely most patients have varying forms of dementia. Mum has CBD with what we now think is vascular dementia only know this after a meeting with mental health team once her behaviour got so bad and they had viewed her latest scan. I found crying at the professionals worked wonders and when I say crying I mean completely loosing it not very pretty but it got action thoughts are with you x x

Reply

That is wonderful you have found a place suitable so close to home. Has your Mum settled? Is it a nursing home or a EMI home? Had they ever heard of CBD or experienced it? Mum also has epilepsy.

I feel even though this is meant to me a short term placement it will become permanent as the lack of community care is so bad.

I've done lots of crying but not lost it completely in front of people. I have told them I feel on the edge of a breakdown though.

I have made it clear today I'm not being pressured into anything. Kevin has also done me a lovely letter to send off too about the funding issues.

Reply

It’s a care home and no they had not heard of CBD . They did look the disease up and have done a lot of reading to be able to under stand they are lovely with Mum even on her worst day when she is really horrible. We placed Mum there in respite in February a social worker was allocated and he backdated to the date of entry a temporary residence status saying they would review after 12 weeks he has only just reviewed and she is now permanent. The hoMe are happy that mums needs can be met at present what will happen once she needs full nursing care i.e totally bed bound I done know ? I think I block that out until it happens x

Reply

I've looked at a few homes over the last week and it breaks my heart seeing all the residents in varying degrees of illness. It is so not what I want for her.

I'm please you have found somewhere so close by and that you are happy with the care she receives.

Is your Mum mobile at all at the moment? Mum's catheter has to stay in unfortunately and get bowels are getting worse even after 7 weeks in hospice they haven't been able to get it under control. It is like a continual river!

Reply

So sorry to hear about this awful situation. Do hope there can be a resolution

Wish I had a suggestion to help - instead sending love and a big hug

Take care

Tippy

1 like
Reply

Thank you x

Reply

You may also like...