Communication/visits 1 step forward 2 steps back

[Exning]

Visit by my wife to see her mother arranged for next week. Progress. But then told that the home is cutting facetime and other calls as the residents want more home activities. They seem to have the ability to fully understand the best way to deal with family isolation is to have a singsong and not to have more family communication. Good strategy with people with dementia. Keep them away from people they knew and loved ....causes too many problems. Also told they haven't the time to keep my wife updated on how her mum is but will definately contact if there is any issues.
It's a good home and they care well for the residents but they seem to totally forget the people outside who need to keep in touch and be reassured and reassuring to their family.

"We will do all the worrying and care, you just pay the bill and we will tell you what we think you need to know."

I am a person who can and have interacted/dialogued to all....CQC, Home, Company, MP, Councillors...But this is getting beyond a joke and it's not a joke.

 

[anxious annie]

Pleased that your wife has a visit booked to see her mum @Exning , but providing more activities shouldn't mean they have to cut FaceTime. The home should be doing both, to stimulate the residents with engaging activities, and support contact with family via FaceTime, phone calls and pod/window visits.
It's very frustrating spending time emailing those in power, but getting , at best, a generic response and no one trying to make things better.
I find it very frustrating when MPs just keep saying residents are more vulnerable, we have to be cautious etc. I appreciate they are more vulnerable (to lots of things not just covid), but do feel that they are over cautious, given the good protection from the vaccines. We need to accept this minimal risk and take the bold step to allow residents visits with all their family, and to be taken out too.

 

[Frank24]

Im struggling with this also - had a window visit last Friday my Mum is in Wales. My brother is visiting this week so I don't get my Facetime but no discussion about this - it just didn't happen.
I feel my mum would prefer a facetime to armchair gymnastics so hard

 

[Exning]

Having a zoom meeting with my MP on Friday. Think she has tired of answering my emails with information I both know and can logically challenge. Fair play she does answer and is on the Gov Committee that questions the Covid Regulations. Trying to think of all the questions I need to specifically raise:

• Why are we not moving to a more risk based policy when vaccinated care home residents are, according to your own scientific advisers, substantially protected from serious effects of Covid even if they do catch it.
• How are you able to justify the lock down policy in homes when it is accepted that the mental health of people with dementia is significantly impaired by lack of contact. Again any risk significantly reduced.
• How much is the government paying towards additional costs associated with covid. Part of this was to facilitate enhanced visiting.
• Since lockdown how many care home residents have died of non covid causes isolated from family. Would hazard a guess a significant multiple of the number who have died from Covid.
• When will the government realise that care home residents are in their twilight years which should be cherished to the maximum even if there is some associated risk.
• Yes some families abrogate the responsibility to the care homes but most want and need to know what is going on. Communication is accordingly doubly important.
• The strategy of this government has always seemed to be we are making it better ….in a while….but the time never comes and some other hurdle is put in place.

Depressing when I read that but for my circumstances, or more correctly my wife’s, it's true.

 

[anxious annie]

Excellent questions @Exning , I would be interested to hear her responses.
Have just listened to Matt Hancock's reply to a question asked by a nurse who wants to get back to work and has been shielding. She says she has had both doses of the vaccine and asked if shielding would definitely end on March 31st. Matt confirmed that yes shielding will end on 31st March for the most vulnerable.
I would like to know why if all shielding people can now follow the roadmap, so potentially meet up with 6 others outside , shop, pub gardens etc from 12th April, go out for a meal or stay at a hotel from May 17th etc, and this is considered safe as they have good protection from the vaccine, why are care home residents still locked away in prison , with only a hope of 2 visitors at step 2 ( depending on data) . Government argues " protecting the vulnerable residents, but what about protecting their mental health as this is clearly overlooked (one 30 minute visit a week does not count!!!!)
Perhaps you could also ask about the 28 day rule from PHE which stops all visits during an "outbreak" ( unless you have ECG) . Is this not also over cautious and in need of revision in light of vaccines and the fact evidence states transmission of infection minimal after 10 days .
Plus the the new guidance for "Visits out of a care home" which states older residents will not be allowed a visit out, even a walk to the park, before June 21st? And those if working age who are allowed out of prison have to pay for this on return by self isolating for 14 days! Staff are allowed out to mix and follow the roadmap, but they don't have to isolate.
Just no equality whatsoever.

 

[Lone Wolf]

Having a zoom meeting with my MP on Friday. Think she has tired of answering my emails with information I both know and can logically challenge. Fair play she does answer and is on the Gov Committee that questions the Covid Regulations. Trying to think of all the questions I need to specifically raise:

• Why are we not moving to a more risk based policy when vaccinated care home residents are, according to your own scientific advisers, substantially protected from serious effects of Covid even if they do catch it.
• How are you able to justify the lock down policy in homes when it is accepted that the mental health of people with dementia is significantly impaired by lack of contact. Again any risk significantly reduced.
• How much is the government paying towards additional costs associated with covid. Part of this was to facilitate enhanced visiting.
• Since lockdown how many care home residents have died of non covid causes isolated from family. Would hazard a guess a significant multiple of the number who have died from Covid.
• When will the government realise that care home residents are in their twilight years which should be cherished to the maximum even if there is some associated risk.
• Yes some families abrogate the responsibility to the care homes but most want and need to know what is going on. Communication is accordingly doubly important.
• The strategy of this government has always seemed to be we are making it better ….in a while….but the time never comes and some other hurdle is put in place.

Depressing when I read that but for my circumstances, or more correctly my wife’s, it's true.

Good questions @Exning and @anxious annie.

After 12 months, the continuation of the care home visitor lockout is particularly callous in view that the average lifespan of a care home resident is approximately 2 years [ https://questions-statements.parliament.uk/written-questions/detail/2017-09-05/8937 ] and also especially because all of us with loved ones with dementia know that as dementia inevitably progresses the emotional connections still remain.

Why doesn't the definition of essential care giver include those visitors that are vitally important for the emotional connections of their loved one in a care home? The failure to recognise this demonstrates a complete lack of empathy and of understanding of dementia, which is sadly appears to be all too common amongst those that make the rules and regulations.

My further question for the MP is: Does the government consider that the continuing denial of care home residents' right to family life under Article 8 of The Human Rights Act 1998 is now proportionate, appropriate and no more than necessary, in the light of current risks to public health and safety?

 

[Exning]

Had an interesting zoom meeting with my MP who agreed that the Care home visiting arrangements had some defficiencies and inconsistences. Not much you can say in short zoom call .....Not in agreement with my attitude towards risk and concerned over the danger until the 2nd dose recieved. She's a scientist and has taken a lot of credence to the virologists concerns that 80 + age less protected and maximum rsistence only confirmed after 2nd dose. She has agreed to make representations for:

• immediate steps so that bubble should be able to visit rather than single person
• to enquire and challenge PHE 28 day rule.
• speed up of opening up homes to more normality as soon as residents 2nd dose becomes effective.

She's a politician though and they often say what they think you want to hear. That said she has always been willing to respond to questions and does challenge in Committee sessions I have watched.
I firmly believe if everyone contacted their MP, Councillors, Care home, CQC etc then things would have to change. While there are only a few people voicing concerns the impetus for change is radically reduced.

 

[anxious annie]

Good that she has agreed to take some points forward @Exning .
It seems only common sense that bubbles should be OK to visit together and would really help if homes could open up more quickly.
MPs seem just to focus on protecting residents because they consider them more vulnerable to the virus, and seem to forget that they are more vulnerable to everything but that's not a reason to wrap them up in cotton wool. They don't seem to think it's important to take what the residents actually may want into account. I can only speak for my mum who would like to spend time with her family and to be allowed out of her prison. I'm sure most would choose quality of life over quantity .
I agree that the more people lobby those in power, the easier it would be to win these battles.

 

[Exning]

Interestingly with todays announcement about considering compulsory vaccine for care home staff, i was asked my opinion about this last week by my MP.....
I had said to her, pre vaccine, that the biggest problem with Covid and care homes was the failiure of ensuring that staff could afford to stay away if they had a suspicion of illness. If you are on low pay and then face having to cope on Statutory Sick Pay that is a real problem.
My comment to her last week was very simple. If you are now worried about further outbreaks in homes then compulsory vaccination of staff should be a must.
The free choice element can be.... not to work in a care home if you don't want the vaccine.
Access to homes is now being restricted by the fear of danger to residents from new variants. The reality is that the more people that are vaccinated the less of a risk this is.

 

[Exning]

Should have given an update on the visit.....My wife was very happy at seeing her mum. I stayed in the carpark to watch the comings and goings......Now the home has taken the policy of being super careful. But....
While watching the coming and goings from my vantage point.
Builders on the roof. Just walking up the pitched roof . No safety provisions and one of the 3 going in and out of the home probably a dozen times in the hour or so I was there. He had a mask but not covering his nose and no sign of use of any sanitiser....The 3 were very close together for long time. No social distancing at all.
Probably a dozen other visitors with no clear sign of sanitiser use.
So the people who would take extreme care are subjected to severe measures and tests.
Visitors and workmen looking like they take little care. Now I think as all residents have had 2 doses there is little risk but a clear case of double standards