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Help! urgent advice needed?

Hi all

My lovely Mother is in her 7th year of CBD. We have tried to get privately funded carers (tried 3 companies) and also carers through social services. We could not get the staff to help at home (all cited they do not have the staff to cover my Mothers high needs) so the social worker arranged NHS responsive services about 10 weeks ago which are intended to reduce hospital admissions. Last night we had a phone call from NHS responsive services to say they have run out of money and staff and can only provide cover for the next 48 hours. Has anyone else been in this position? I feel we have been let down by social services and also the NHS. What do we do? We have 24 hours to get help and I don't know where to turn? I am thinking as a last resort AandE and say we cant get carers and we cant cope? My Mother is very advanced in CBD and cannot move, communicate, feeding an issue, breathing an issue, etc Any advice would be very gratefully received, I am so very desperate..

24 Replies
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PS we were turned down for CHC funding in April

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Hi Martina

Gosh, this situation is desperate.

Go and see the G.P. Tell them you can't cope and that you need help. If the GP doesn't know what to do prompt then about CHC.

This needs to go to the CCG as a fast track referral.

April is a long time ago. Make a list of what has worsened. A CHC assessment is probably in order. And, the fact that you will not cope without CHC increases the risk to the patient. Lay it on the line.

Additional services like fast response home support can say they haven't got capacity, but the NHS (read CCG) cannot. They have to respond to health needs.

I do hope this helps.

Come back to me if you need. I will keep logging in her.

Warmly

Kevin

XXX

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Thanks Kevin we have got the NHS fast response and they are the ones saying they cannot cope and that is why we have 24 hours to get something else sorted? If the emergency back up cant help then there is nothing else other than A and E?

Thanks Kevin its good to know you are there and I am not alone?

Crikes its bad enough dealing with the disease and now this?

Mx

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Hi Martina

Sorry I am a little confused. By fast response do you mean the team the G.P. calls in to keep her from going into hospital?

That is not the same as CCG Fast Track.

The CCG is not legally allowed to say, 'run out of money', 'can't cope with the demand.' They are legally required to put services in to all qualifying patients.

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Hi Kevin the fast response team are for those recently released from hospital. My Mother qualifies for that but they are only supposed to be for a short period of time until you get a more permanent care plan sorted. Trouble is there is not a care agency able to take on my Mothers high care needs so the NHS have continued the care plan. Now they are saying we have 24 hours to sort something else out? Social services cant find anyone either...

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Hi Martina

Yup, were on the same page.

Please go to the GP. There needs to be another CHC request and a fast track assessment. Unless you are sure that she does not qualify and I would be beyond surprised if that were the case.

The Hospital Discharge Team (however they fancily rename them) is not allowed to pull out and leave a patient at risk.

Quite often the CCG can do clever things. Like dovetail two agencies in. They have tremendous clout as the agencies survive on their referral.

Do not let them push the problem on to you. They are there to put things in place.

Warmly

Kevin

xx

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Thanks Kevin we seem to lurch from one crisis to another? I've got work tom and trying to support my family too. Its getting really hard to cope..

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Hi Martina

Sorry to have badgered you. I'm ex NHS and get frustrated when they don't do their jobs the way they are required to do.

Telephone the G.P.?

I don't mean to pressurize you... Just know that we and many more here are in your corner.

I hope you get a decent nights sleep.

Warmly

Kevin

xx

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Thanks Kevin but when social services can't help you and then the NHS can't help you what else can you do? You are left with fighting for help from the NHS that you have paid into all your life? Its really tough battling with CBD then having to fight to get NHS help? I am so battle weary?

I so appreciate you hearing me and giving advice as I just don't know how much longer I can fight to get help?

Mxx

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Hi Martina

I walked into that very same wall.

You have paid in all of your lives and providing care is not an option they might choose to take up.

I nearly broke before we got care. What turned the tide was when I said, "I can no longer do this alone."

I expect you are in a grim place right now and, being a strong person, you are probably running almost on automatic.

I am here for you and your Mum, we all are.

Sleep well.

Warmly

Kevin

xx

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Martina, what a totally awful and disgusting situation you have been left in. Social services have a duty of care to your mother and she is an extremely vulnerable adult.

It shouldn't have to be this way but the only solution I can think of is to phone Social Services (they will have an out of hour emergency number) and tell them it is all to much for you, affecting your own mental health and you just can't cope.

I would tell them that you have left her and as sorry as you are you will not be going back. If nothing is done by morning then you will have no choice but to call the emergency services, but for now your mother is alone, frightened and at risk of serious harm.

Having said that I would stay with her and if and when someone shows up you can leave the back way. If no response within in a couple of hours then phone the police, say she is alone and your very concerned but can not go back, again explain she is at risk of serious harm (falling, choking, starving etc.)and you need them to do a welfare check. I wouldn't mention she is immobile as they may leave her till morning.

I'm sorry I can't be of anymore help and I really do wish you the world of luck. Such a nasty and cruel world we live in and to think we are fortunate enough to have the NHS .....not in your sad case.

Sending a huge hug to you and your mum, please let me know how you get on when and if you have the time xxx

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Thanks Sarah I will call the GP and social worker in the morning. My parents have paid into the National Insurance and worked all their lives. Now when we need them we don't have them? I am at a loss..

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Hi Martina

The social worker probably does not know this so if you are going through them:

The Social Services are obliged to refer cases to the CCG if they suspect that the person might qualify for CHC.

They are legally bound to make a decision as to whether the care is beyond the 'limits of social care'. A line dividing them from the NHS which they must never cross.

You could go through the Soc. Services on that tack, but GP is direct and should get a response withing 24 hours.

Our hearts go out to you.

Kevin

xx

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Sorry I can't assist. We are in Cape Town South Africa.

Here if you need descent service you have to pay privately.

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Martina read what Kevin has said. He is right. Get in touch with your GP and tell him/her his tale. You need CHC funding to be fast tracked! They can't just wash their hands of your Mum. It's their problem how they cope not yours!! If they have run out of money at the beginning of September what happens to all who need help later?

Can you get your MP involved too? This is a very serious condition. I have never heard of this happening to anyone. Kick up a real fuss and threaten them with the press if they refuse CHC funding. Your Mum should have had it ages ago by the sound of things. They won't like to be splashed across the local and national press? It is your GP who needs to fast track this though.

Please stay in contact. We will all want to know what happens and can we help. Where do you live by the way? It is possible your MP whoever they are will be very interested in this story. If they have half a heart they will.

Hugs to you darling and your poor Mum.

Marie x

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Thanks Marie I really am on my knees with trying to get help now. I am totally battle knackered by it all. Will phone GP tom and say that's it totally and utterly defeated...

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How awful Martina,

Thinking of you. I so hope you get it sorted before you crack up.

We're all with you.

love, Jean xx

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Oh, Martina. I read your words and know exactly how you are feeling. My heart goes out to you. "battle knackered". Just so.

Try to hang on. This won't go on forever, although that won't feel true until it's all over. It's impossible to get any long perspective when you are so down low. I wish I could truly help, as Kevin is doing, but know at least you aren't alone. Big hugs, ec

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Dear Marina

This is so wrong and should not happen. Please shout loud and clear to GP that you cannot cope without support. Would absolutely follow Kevin's advice.

Please take care of yourself . Sending love and hugs, keep us posted

Tippy

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I live in northern ireland i would go with ur gut instinct my mum is in her 4th yr its heart breakin and she doesnt want to know anything

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So sorry to read this situation but it really does appear to be more common occurance these days that no one will take the responsibility for patients. We had same issues no. Agency had capacity to take on Mums care package needs and the social worker and manager were not at all interested that we were going to be left with no care coming in. It is a hard battle and I know you are totally done in with it all.

Kevin as ever has given fab advice and I hope the GP will act swiftly for you today. Is your Mum under the hospice team at all? Can they help?

Thinking of you xxx

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Hi my wife and I used to work for Country Cousins (www.country-cousins.co.uk) which supplies carers and who live in for a fortnight at a time doing all the caring, cooking etc. Try them, they cover whole of UK. We would work 2 weeks on 2 weeks off so there was constant care of usually the same carers. It is a Private Company, check out the prices. I even went on a cruise with my care. Hope you find the carers you need.

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Hi all thank you for all your replies...I phoned social services and NHS responsive services this morning and they have both reassured us that the carers will continue to go in. I did question why we had the phonecall on Saturday night and that member of staff is off today but hoping for some clarification! Fingers crossed tomorrow the carers turn up!

Mxx

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Thats good news. Hope its true !!!!

love, Jean x

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