Staying in touch with loved ones living in care homes: your experiences

[HarrietD]

What are the biggest challenges you've faced to stay in touch with loved ones living in care homes?

We know that social contact and regular communication with loved ones are essential to the health and wellbeing of people living with dementia. With restrictions in place for care home visits as a result of Covid-19 lockdown measures, many people have concerns about the impact this could have on their family and friends living in care homes.

By knowing more about your experience, we can call on the Government to address these concerns and ensure the needs of people affected by dementia are considered in their next steps.

Please share your experiences with us by completing our short survey (link below) on the challenges you have faced to stay in touch with your loved ones in care homes.

>Visit the survey<​

 

[Sarasa]

Filled it in.

 

[HarrietD]

Thanks @Sarasa, much appreciated.

 

[Louise7]

I completed it too - my replies are quite lengthy!

 

[HarrietD]

@Louise7 thank you. No problem if your replies are lengthy - it all helps

 

[Louise7]

By knowing more about your experience, we can call on the Government to address these concerns and ensure the needs of people affected by dementia are considered in their next steps.

Good luck with that, we live in hope

 

[anxious annie]

I have filled in the survey. I'm afraid I had nothing positive to say. My mums mental health has deteriorated significantly. She finds it too cold to visit in the garden, and even by an open window. She wants to see more than one person from her family, and feels abandoned. I am actively writing to my MP, Boris, Matt etc to ask what they are doing to change their I humane guidelines, but no progress. I feel very strongly that until there is media spotlight , such as when all the deaths were happening, that the problem will just stay hidden. I feel that we as families , need the support, finance and contacts that dementia organisations have to give. Otherwise campaigns for change won't happen.

 

[Kellyr]

I have filled in the survey. I'm afraid I had nothing positive to say. My mums mental health has deteriorated significantly. She finds it too cold to visit in the garden, and even by an open window. She wants to see more than one person from her family, and feels abandoned. I am actively writing to my MP, Boris, Matt etc to ask what they are doing to change their I humane guidelines, but no progress. I feel very strongly that until there is media spotlight , such as when all the deaths were happening, that the problem will just stay hidden. I feel that we as families , need the support, finance and contacts that dementia organisations have to give. Otherwise campaigns for change won't happen.

Ive tried contacting local MP but useless. Unless the Government makes changes to the guidance to protect the rights of residents and relatives to have meaningful contact/visits, in the strongest possible terms, the carehomes will carry on as they are forever I think. Im abit suprised more people arent commenting on this now..

 

[Baker17]

Ive tried contacting local MP but useless. Unless the Government makes changes to the guidance to protect the rights of residents and relatives to have meaningful contact/visits, in the strongest possible terms, the carehomes will carry on as they are forever I think. Im abit suprised more people arent commenting on this now..

@Kellyr I’m surprised there hasn’t been more comments. I’ve e mailed so many people about even Boris but the silence is deafening. The most positive thing I’ve seen is a campaign on Facebook called rights for residents which has been started by two lovely ladies in the north west of England. They need as much support as everyone can give them to get the message out and enable us to be with our much loved family members again before more damage is done to them by the lack of contact with us. x

 

[Louise7]

You might be interested in a debate which is being live streamed tomorrow (Weds 9th) at 3pm. Various representatives, all with their own views on the current care home visiting situation, will be discussing the situation, including the Alzheimer's Society, John's Campaign, Residents & Relatives Association, and the chief executive of Care England: https://www.wellburncare.co.uk/the-debate

 

[Kellyr]

I filled in the survey but had to search for anything at all to do with this subject. If the survey was more visible on the website it would be good

 

[Kellyr]

You might be interested in a debate which is being live streamed tomorrow (Weds 9th) at 3pm. Various representatives, all with their own views on the current care home visiting situation, will be discussing the situation, including the Alzheimer's Society, John's Campaign, Residents & Relatives Association, and the chief executive of Care England: https://www.wellburncare.co.uk/the-debate

Thanks for this...!

 

[blueorchid]

Done. Writing it down brings it home how inhumane this time has been.

 

[Baker17]

You might be interested in a debate which is being live streamed tomorrow (Weds 9th) at 3pm. Various representatives, all with their own views on the current care home visiting situation, will be discussing the situation, including the Alzheimer's Society, John's Campaign, Residents & Relatives Association, and the chief executive of Care England: https://www.wellburncare.co.uk/the-debate

@Louise7 thanks for that information unfortunately I have a window visit booked at that time so I won’t be able to join, but I will pass the information on

 

[Linsac]

I have written to my lovely MP and this is the reply I received back almost by return:

Thank you so much for writing to me. I'm glad to hear that your mum is in respite care for a few weeks - but as you say for so many people the lack of visits in care homes is causing real distress.

I have had messages from other constituents about the terribly difficult and upsetting position they and their loved ones are in. As restrictions ease in other parts of life, it is so important that people in care homes are not forgotten and I am asking the care Minister about this policy and what processes are in place to assess and review it.

There is clearly a balance of risk in terms of preventing Covid19 infection and harm to people living in care homes caused by the restrictions themselves. Your email provides a powerful reminder of how important it is for the impact of all restrictions to be very carefully assessed on a regular basis. As you may have heard on the news recently, a charity is seeking a Judicial Review on care home visiting guidance: https://www.bbc.co.uk/news/uk-54007273

I also wanted to let you know that I am closely in touch with the Alzheimer's Society, as they are very concerned about the impact of lack of visiting on people in care homes and they confirm your point that for people with dementia, this is making their condition worse. To raise this formally, last week, I worked with the Alzheimer's Society on written Parliamentary questions, which I have asked as follows:

To ask the Secretary of State for Health and Social Care, what representations he has received on allocating key worker or equivalent status for family carers, enabling them access to (a) regular covid-19 testing, (b) PPE and (c) training on infection control so that they are able to visit their loved ones in care homes safely; what discussions he has had with (i) infection control experts and (ii) charities representing people living in care homes about those representations; and if he will make a statement.

To ask the Secretary of State for Health and Social Care, what assessment he has made of whether people with dementia have been disproportionately affected by the covid-19 outbreak; and if he will make a statement.

To ask the Secretary of State for Health and Social Care, what assessment he has made of the effect of the lack of visits for people in care homes due to covid-19 restrictions on the speed of deterioration of dementia symptoms of care home residents; if he will set out a strategy to enable people affected by dementia to recover from the effects from the covid-19 pandemic to include (a)rehabilitation to counteract effects on cognitive or physical functioning, (b) support for mental and physical health and (c) speech and language therapy; and if he will make a statement.

Today, I have also asked further written questions to support the work that the charity is doing on respite care, after they released a major new report on respite for dementia carers yesterday:

To ask the Secretary of State for Health and Social Care, what assessment he has made of the recommendations made by the Alzheimer’s Society report ‘The Fog of Support – An inquiry into the provision of respite care and carers assessments for people affected by dementia’.

To ask the Secretary of State for Health and Social Care, if he will take steps to require a uniform method of recording the provision of respite care across local authorities, including data on whether the person being cared for has dementia; if he will undertake regular assessment of respite care data at a national level; and if he will make a statement.

To ask the Secretary of State for Health and Social Care, what discussions he has had with the Secretary of State for Housing, Communities and Local Government about the provision of dementia-specific carers’ respite services since the Prime Minister's statement to the nation on Covid-19 on 23rd March 2020.

I hope that representations like this will help to keep the pressure on Ministers to do everything in their power to help and support people living in care homes and their loved ones and carers.

Thank you again for writing to me - messages from constituents really does help me to make the case to Ministers.

I hope that you and your mum stay safe and well.

Best wishes, Caroline

 

[anxious annie]

Ive emailed in some questions for the panel, but not sure how you follow a live stream, am sadly lacking in technology skills @Louise7 , so would love it if you would be able to update this thread with the outcome if you are able to tune in.
It's really hard getting a response from MPs, I've emailed my MP 3 times and she's still trying to dodge me. She's not doing surgeries, and I don't zoom so have asked her to phone me, but no luck on a time yet!
Have also tried emailing Helen Whately minister for Health and Social care but only have email for parliament address so kept being bounced back, and no one would fwd for me. Eventually got a phone number, and from that office an email contact which for anyone wanting to bombard Helen is
msc@dhsc.gov.uk
We just have to keep trying. The ladies you mentioned @Baker17 are doing so much.

 

[anxious annie]

That's great to hear @Linsac , some MPs do care x

 

[Louise7]

Ive emailed in some questions for the panel, but not sure how you follow a live stream, am sadly lacking in technology skills @Louise7 , so would love it if you would be able to update this thread with the outcome if you are able to tune in.

@anxious annie I wasn't able to watch the debate live as I was working but a video is available on line so I watched it last night. It is worth a watch, and it was made clear that the best interests of the residents was central to both the care homes and families, but essentially the outcome was that there is no easy solution, and better testing is the key to opening up care homes for visits. Personally, I think that as infection rates are now rising across the country, and the prospect of reintroducing shielding is under discussion, then there will unfortunately be more care home restrictions/lockdowns in the near future, not less.

Here's a summary of the things that were discussed:

Care homes have to have insurance in order to operate but insurance companies are not providing covid cover. The promised testing regime whereby care staff get tested weekly and residents monthly is still not in place in all homes, plus a faulty batch of testing kits also resulted in a lack of testing. Some care homes are not logistically able to facilitate visits due to the layout of the home/lack of suitable outside space. Even in homes which have regular testing in place there are often long waits for results and some come back as ‘inconclusive’ requiring further tests. The testing issues mean that the homes do not know whether they do or don’t have the virus. If one staff member tests positive then others have to self-isolate resulting in reduced staffing levels. Infection rates are rising. If the new 20 minute tests/daily testing that is being promised is put in place then that would help to enable indoor visits to take place as homes could be assured that that staff, residents and visitors do not have the virus.

The current guidance is ‘woolly’ and not mandatory and is resulting in inconsistencies - some homes are allowing visits, others are erring on the side of caution and not allowing any visits, some have been advised by the local authorities not to open up for visits, and some care home managers are more risk averse than others. Visits have a big impact on staffing levels and the visits need to be carefully managed in terms of infection control. Staff are aware, or have seen for themselves, how easily the virus spreads through a home – they are scared and have been leaving, and there are difficulties in recruiting new staff for the same reasons. PPE helps as a barrier but it does not stop the virus getting in and spreading rapidly. The risk is increased the more people that go into the home. Some families want homes to be opened for visits but others do not – although they want to see their loved ones, they do not want residents and staff to be placed at increased risk when so much good work has already been done to keep the home covid free.

The impact on those with dementia and their families is fully recognised (examples were provided). The restrictions are causing people with dementia to deteriorate. Families are not just ‘visitors’ – many take on a lot of the caring responsibilities. The guidance appears to have been written by those with no idea of care homes/dementia and there are human rights considerations. The CQC is not visiting, neglect and abuse may not be identified. Some care homes are actively involving families in their decision making process and explaining why visits could not go ahead at the present time – it was recognised that it was important to have good ongoing dialogue between care homes and families.

The debate lasted approx. 1hr 40 mins – the video is available here:

https://www.wellburncare.co.uk/the-debate

The John’s campaign representative referred to this press release released yesterday, which explains the basis for their judicial review:

https://www.leighday.co.uk/News/Pre...tia-carers-challenge-family-visiting-guidance

 

[Wishing20]

I‘ve replied. People in Care Homes have been forgotten by this Government. SIX long months of separation, it’s absolutely unbelievable. As if its not enough the grief we endure when our loved ones have this awful illness, all this made so much worse by the current restrictions. It’s inhumane!! And there is no end in sight

 

[anxious annie]

Thank you so much @Louise7 for your detailed summary of the debate. I will follow the link on video that you posted.
It's all very sad really, everyone is aware how hard care home staff have been working to contain spread of infection and we can imagine how they want to protect this.
But no answers put forward as to o how indoor visits for all can go ahead ...... other than testing, which doesn't seem to be happening anytime soon.
I put forward a question to one of the panel members from one of the big dementia charities about what they are doing to gain media attention to the I humane visiting restrictions, but not sure if it was included , not very surprised if they ignored that as they seem to have done very little to get the story out into the public eye.