To find this revelation from an NHS carer shocking?

[Lizzie523]

I have a very vulnerable family member that I have not seen since covid. She is now in the late stages of alzheimers and have been starting to wonder if I will ever see her again.

Recently her carers had been visiting her whilst also going to look after a person with covid at the same time. Their highers up explicitly told them they must not inform us or other family members this was happening/the risk to her.

So far she has not caught covid but I dont feel confident about it not happening in future. AIBU to be beside myself with worry?

@baublesbaubleseverywhere the NHS does not provide domiciliary care except in very exceptional circumstances and only for a very short timeframe, so to facilitate a discharge from hospital whilst a package of care is being organised by Social services or family. The NHS may fund care in specific circumstances but will not be providing the staff, this will be provided by private care providers. About 90% of domiciliary care is now provided by private care providers.

Since 1979 there has been a remarkable shift in sectoral provision. In 1979, 64% of residential and nursing home beds were provided by local authorities or the NHS; by 2012 it was 6%. In the case of domiciliary care, 95% was directly provided by local authorities as late as 1993; by 2012 it was just 11%

@frumpety I know that. As I said, I highly doubt the carers are NHS, what I really mean is the carers WON'T be NHS, I was just trying to be nice!

@Lizzie523 I'm going to assume the reason the care agency advised the carer not to disclose they had seen a positive patient was because your relative had not been in direct contact with the positive (this is just me playing devil's advocate)

In hospitals (and I'm assuming care homes are the same) we're not required to inform patients of the infections other patients have unless they have been put at risk by direct exposure e.g same bay or shared bathrooms. Being a "contact of a contact" doesn't count as we're wearing PPE and change it in between each patient.... Plus it takes into account the incubation period prior to coming contagious.

I hope that helps with you trying to understand why things may have happened the way they did.

(I'm a community OT, so I deal with carers and care packages / CHC assessments as part of my job)

Sorry @baublesbaubleseverywhere

My mother's in a dementia care home. Residents' families are informed if there is a Covid case & all visits are stopped for a fortnight.
We are not told who the resident or staff member is or the outcome as it's confidential medical information.
Yes it would be good to know the inside gossip but that's the way things are & I'm happy with the home's handling of the situation.

As has been pointed out many times on this thread, regulations are different in care homes to home care.

Nettie1964 what are you being lied to about?

• Social care is means tested in most local authorities in England, whether domiciliary or residential care. Unless CHC criteria is met. Domiciliary means testing does not take in to account the property the cared for resides in (but would take in to any second homes and savings over £14250).

• the carer will have been told not to give info about other service users. The agency themselves will tell people what their policy on treating COVID + patients is.

• all care agencies will treat covid + patients at some point. It's unavoidable.

• whilst infectious service users should be treated/ cared for last if possible, some will have time critical care, either due to medication or pressure relief care and so cannot be put to the end of the list.

• the majority of people with dementia live at home, with domiciliary care, including the majority of those with advanced/ severe dementia.

You should be informed if in general the same career is seeing Covid and non Covid patients and what they are doing to mitigate the risk to non Covid clients, eg seeing those with Covid last in a day if that’s possible, dis arising PPE used after visiting a Covid patient etc. as POA you have a right to Information that affects the well being of you relative so you can make informed decisions as to hat is in the best interests of her care and as a vulnerable person how to ensure she is adequately safeguarded. You could for example decide to hire alternative non Covid dedicated career/s.

My mum lives hundreds of miles from us and has carers several times a day. I understand how worried you must be and also what else are they supposed to do? Everyone still needs care including the Covid positive patient and that's what PPE is about. Carers themselves could have Covid and be asymptotic and still be working. So I think you ABU but it's an unreasonable situation for everyone.

@Lizzie523

I'm a bit shocked here to read this is deemed perfectly acceptable.

We want to do everything we can to ensure that her end of life care is the best possible. We don't want her to die from this awful disease. How can we continue making those decisions if we dont even have that information to begin with?

I don't wish to sound harsh, but Alzheimers is also an awful disease. My father in law was in the late stages of Alzheimers during the first wave. We knew that his carers were coming to him straight from other people's homes, on public transport, and not doing much more than hand washing and mask wearing before they fed him/cleaned him etc. We knew that there was a high chance that eventually Covid would find its way into his house, and eventually it did, and he passed away in hospital in April. It was a gentle, kind death. He was given plenty of medication and extra oxygen to make it painless. He did not know he was dying and he was not in any distress. When he passed, we all felt relief that he was no longer in the sheer hell of late stage Alzheimers. Covid is not the worst way to die.

do home carers inform their clients and their families if they are looking after other clients when we have norovirus in the community? or if any of their clients have MRSA and open wounds?

@YesMeLady

do home carers inform their clients and their families if they are looking after other clients when we have norovirus in the community? or if any of their clients have MRSA and open wounds?

No.

(which I think is your point!).

@Mirinska

You should be informed if in general the same career is seeing Covid and non Covid patients and what they are doing to mitigate the risk to non Covid clients, eg seeing those with Covid last in a day if that’s possible, dis arising PPE used after visiting a Covid patient etc. as POA you have a right to Information that affects the well being of you relative so you can make informed decisions as to hat is in the best interests of her care and as a vulnerable person how to ensure she is adequately safeguarded. You could for example decide to hire alternative non Covid dedicated career/s.

I doubt any company is going to promise that their carers are not exposed to covid. They can't stop care if one person tests positive, or what if the carer themselves catches it at the supermarket? The only solution would be a live in carer that doesn't leave the house and isolates for 2 weeks before starting work.

You also have to remember that testing is not mandatory - clients could have symptoms and refuse to be tested. Also some clients are unable to consent (such as advanced dementia) and it would not be in their best interest to be tested if they are well enough to remain at home.

Bearhorn I'm sorry to hear about your father-in-law.

It's worth bearing in mind that the leading cause of death for people in dementia is pneumonia. As you describe, it can be well managed with pain relief and oxygen to be as kind and dignified end of life as possible.

Covid would present very similarly and would, for most people already frail and elderly, be a similar trajectory to the end pf their life.

Sorry to be so factual, but I know that my mum may be in this situation any moment (progressive condition although not dementia) and have thought about it a lot.

You have the right to know - the fact they keep it from you is shocking.

You might want to check if they have put a do not resuscitate order on her as well as they are also doing that without permission!

I know NHS and private health care workers that have tested positive and their bosses have told them to keep quiet and keep working. Which I think is disgusting.

They are removing your right to protect your or your families health and that isn't OK.

You might want to check if they have put a do not resuscitate order on her as well as they are also doing that without permission!

Doctors do not need permission form relatives to place a DNR order on a patient. Best practice is to discuss it, but they do not need permission

Umm, can we not be freaking the BeJeezus out of people with ill-informed discussions about 'DNR orders' please?

The discussion and advanced directive are specifically about interventions like CPR, ventilation and intubation which are aggressive interventions with very poor outcomes in frail older people with a degenerative illness.

If people have a POA it is extremely probable that these discussions have been had and appropriately recorded.

DontStop is right inasmuch that if there is no advance directive and the person doesn't at that point have capacity to make a decision the doctors may be in the position of making a 'best interest' decision based on their clinical assessment of the situation.

If anyone has ever seen CPR being performed (it looks nothing like Casualty btw) you'd understand the reasons for this.

@bemusedmoose if you read the thread and see that you are wrong, and your post is only going to make the poor OP even more anxious.

If there is a DNR, which would hopefully have been discussed with the client and the POA, it will be clear to see in the care file at their house. If it's not there, and the carers are not aware of one, then they will perform CPR.

I was recently involved in a horrid case where a family had refused to engage in advanced care planning for their terminally ill mother. That's their prerogative. This resulted in a district nurse performing CPR on a frail elderly woman who was probably days away from death, had they not had a cardiac arrest. CPR is brutal, and outside of a hospital setting has a low success rate. People really need to understand this.

CPR is brutal, and outside of a hospital setting has a low success rate. People really need to understand this.

Indeed. I think TV has a lot to answer for on this.

Broken ribs, damaged tracheas, hypoxic brain injury, internal organ damage, bruised hearts. The reality is, 'successful' CPR on frail and elderly people often results in a few days on a vent before brain death is declared.

The ppe posters are you not aware that a surgical masks , gloves and a plastic apron won’t stop the spread of Covid-19. It’s really concerning that people believe this.

@AldiAisleofCrap

The ppe posters are you not aware that a surgical masks , gloves and a plastic apron won’t stop the spread of Covid-19. It’s really concerning that people believe this.

So what do you think that HCP's wear when working with +ve patients if they are not carrying out AGP's?

@AldiAisleofCrap

The ppe posters are you not aware that a surgical masks , gloves and a plastic apron won’t stop the spread of Covid-19. It’s really concerning that people believe this.

It's really concerning that you are spreading this rubbish.