The battle for hospital visiting

[Adoralan]

Just wondering what the experience is out there about getting into hospital for visiting. My mum has no formal dementia diagnosis currently. She contracted Covid in mid December and was hospitalised for the first time. I was allowed to visit as she was on the end of life pathway for a while, but once she pulled through I was told I could no longer visit (they accepted she had dementia and had asked me to fill in a "This is Me" form). As the hospital policy said visiting was permitted for patients with dementia who had "specific needs" I asked why not. I was told that there were lots of people with dementia in the hospital and none of them could have any visitors! When she was moved from the Covid ward I was told that the visiting policy would be the same in the next ward. Mum was discharged from hospital and came home, where my sister lived in with her to support her recovery. She developed Covid related pneumonia and ended up back in hospital. She came out again and then ended up back in with blood clots on her lungs. Mum had delirium again on admission to hospital. She is still there now.

I have done a lot of research about NHS England's guidance on visiting, but the fact that the decision has been turned over now to local trusts seems to mean they can pretty much make up their own rules. I have been told over and over that visiting is "not permitted", by nurses, doctors and nurses in charge, despite the policy on the trust's website being visiting is allowed for patients with dementia with "specific needs" (whatever that means, no -one has told me). I went to the carers liaison team and they helped me to get a "one off" visit to my mum. She was at that time in a room by herself with blank walls, no tv or radio, and in a truly pitiful state, begging not to be left and telling me over and over "I think I am dying." She was moved to a ward where she could be in a 4 bed bay. I asked for a visit. The nurse in charge that day told me that it was a closed Covid ward and mum was now "settled" (she had been assessed as low mood/depressed and given anti depressants, which initially sent her hyper). I sent a written request in by email stating my case for visiting (she has dementia, I am a carer, she is very deaf and struggles with communicating with by phone, is tech illiterate, quoted Dementia UK advice about the need for support in hospitals to prevent mental deterioration). Next day I got a phone call from a ward sister inviting me in for a visit, very helpful and stating how important it was for people with dementia to have visitors! Had a lovely visit with my mum, ward sister came to see me and once again stated her support for visiting. Wondering what response I will get next time I ask. Exhausted and fed up now with the whole situation, mum is much better on the anti-depressants now the dosage seems to be right. She is expected to be discharged to community hospital soon for rehab, I wonder what the situation will be there. I'm going to get Patient Advice and Liaison Service (PALS) at the hospital involved if I get more hassle, I think.

How about you?

 

[Wildflowerlady]

Hello @Adoralan ,
My dad was admitted to hospital in December 2020 from a Care Home he had only gone into from his own home in November same year. dad did not have covid when admitted. Dad had mixed dementia Vascular/Alzeimers and Care Home were concerned as dad had basically stopped eating much since being in their care his appetite was poor at home they could see him declining fast and their GP that came in and saw dad twice advised dad be sent to hospital. Care home was closed to visitors so hadn't seen dad in in maybe two weeks. My dad was not allowed any visitors for around two weeks at the hospital and then hospital allowed open visits for sister and I only one of us being allowed to visit at a time. We were allowed visits because hospital determined dad was now End Of Life and about three days after telling us this dad was returned to the Care Home to their nursing floor for palliative care. My dad passed away in January. We were allowed visits to the Care Home now which I did daily. Unfortunately despite wearing PPE I caught covid as dad had a positive covid test result come back to the Care Home the day before he died. I could only have caught from dad by being in his room as had been very careful since the Pandemic started. My contact with staff was minimal and obviously social distance with all wearing PPE however I do know that some staff had also received positive results. My own feeling is dad caught covid when he went back to the home from a member of staff because of the time span and not the hospital. I felt the need to see my dad every day but was not aware he was covid positive until day before he passed when a member of staff called me not long after I had got home from visiting him. I was very ill with Covid and had to be admitted to hospital, like your mum I developed covid pneumonia and a blood clot was found in my lung this was around 12 days after I started feeling unwell and eventually called for a ambulance. I didn't go in and out of hospital as my problems were discovered on admission treatment with thinners for 3-6 months are now needed to prevent further clots.
Its a really difficult decision as the overwhelming desire is to be with the person you love but covid is unfortunately in places like hospitals and Care Homes and that is why they are being cautious, its probably easier to pick up in these environments. I thought I was safe as wore mask, apron and gloves and lateral flow tests were all negative and taken every single visit but clearly I was not that safe. Now that vaccination is taking place hopefully it will become much safer for everyone concerned. I missed my dads funeral as wasn't released from hospital until the day after his funeral. A lady in same closed covid ward as me unfortunately didn't make it she died 8 days after I left her, her husband called me as found my number he was only allowed in to see her when they called him to say goodbye to her. You are correct in that it does seem that visiting can be down to individual policies my dads Care Home manager was very open to allowing visits to End Of Life clients.

 

[anxious annie]

Hi @Adoralan , hospital visiting seems to differ depending on whoever you happen to speak to at the hospital.
My mum went into Macclesfield hospital in April after a fall at her care home and no visiting was allowed.
She had 2 nights in January and again no visits because cases were high in the community. I had checked the hospital website and it said patients with "cognitive impairment" could have visits so mentioned this to the nurse who answered the phone. I said mum has dementia, but she said patients with dementia could only have visits if they were "distressed". I took this as meaning only if they were being too difficult for the staff to handle! My mum wouldn't be difficult for staff, but she was very anxious and in need of family reassurance.
She is due a scheduled operation once the hospital restarts operating and I am already in a "battle" re isolating. The hospital want mum to isolate in her bedroom at the care home for 14 days pre op, (solitary confinement), then after the operation will end up isolating for another 14 days on her return to the home, even with a negative test and no evidence she will have been exposed to covid! It's so hard on her mental well being so I have asked the hospital why she can't isolate with her household bubble (the other residents) for 11 days, then after covid test just isolate in her room for 3 days. I've said if she catches covid in the home it will be from the staff as the residents aren't going anywhere.
I've been passed onto the "customer care" team and have a Pals case number. I have also been contacted by the Admiral nurse based at the hospital who will intervene on my behalf.
It may be worth seeing if your mum's hospital have an admiral nurse as she has been very supportive.
I think you just have to not give up and then they are more likely to allow a visit. They ought to allow visits for anyone who has dementia if it says so on the website as they can't really assess needs at the hospital, many staff won't have the expertise in this field. It certainly sounds like your mum would benefit from family support.

 

[Adoralan]

Hi @Wildflowerlady,

Thanks very much for your response. What I find frustrating is the sheer lack of communication/explanation and consistency. I understand the risks involved, but the government/NHS overall guidance is quite clear that Covid safe visiting is permitted now and I get the feeling that a lot of the blocking is because it's easier to manage than implementing Covid secure measures. What is even weirder is that when I did get to visit, Covid procedures seemed quite vague. Wanting to comply, I asked about what the rules were on social distancing, holding hands whilst wearing gloves etc. (my mum is swabbing negative for Covid and having had it should be immune for the next 90 days) and the staff just didn't seem to know. A nurse said "Well, you're wearing gloves, it should be okay."

From reading around the policies and measures of various hospitals, some appear really switched on, with a code of conduct to be signed by visitors etc (assuming they are actually doing it of course... ). I think what annoys me most is that the hospital's policy says one thing but they are doing another, without any clear reasoning. I get that the NHS staff are doing the best they can under massive pressure, but I really don't think it's okay if the needs of individuals (especially those with dementia who can't advocate for themselves) are compromised in the process. My mum has been in hospital for over 2 months now and is facing another long stint in rehab at a community hospital. In that time her mental state deteriorated rapidly and it felt like Catch 22, her mental state delaying her physical recovery.

Maybe I'm being too blase, I lived with my mum to care for her when she was first tested positive for Covid and visited her daily in the Covid ward, when she was on end of life, developing my own routines of sanitising my clothes/car etc. every time and have successfully avoided it. It's a truly foul and dangerous illness, but I will still take that risk.

 

[Adoralan]

Hi @anxious annie ,
I've just picked up your response, thanks so much. Yep, I think "distressed" means exactly that, as I was told by carer liaison that a patient on another ward had been allowed visits as his behaviour was difficult. My mum, like yours, is lovely but anxious and distressed. I'm hoping that having established a precedent for my mum, I can keep the ball rolling. I will check out the Admiral nurse situation and contact PALS if necessary. I hope you get a sensible and satisfactory resolution to the "isolating" situation.

 

[Linsac]

Mum was recently in hospital with Covid and delirium. I obviously couldn't visit when she had Covid but once she was clear and moved to a Covid ward, I was told by the ward sister that I could visit as she has dementia. She was having to have one to one care due to high anxiety and trying to escape. However, a doctor told me only the day before that there was no visiting allowed, period. I really do think it depends on who you speak to but if you lay it on thick about the dementia and how a visit would lift their mood, you are more likely to be permitted.

 

[silkiest]

Hi my experience has been very hit and miss also - ward sisters refusing access and then others allowing it. Sometimes it seems to be whoever makes the most fuss gets what they want whether it is from a patient or their loved one.

 

[Adoralan]

Hi @Linsac and @silkiest,

Thanks for your info. This all seems familiar. Surely the point of having a policy is that it should mean that everyone does the same thing?

Also, @Wildflowerlady, I should have expressed my sympathy for both your loss and awful experience with Covid. You really have been through hell and back and I hope you are recovering and getting support during your grieving.