My dad has msa-c and was blue lighted to a&e in the early hours due to low Sat's, low BP and respiratory distress, its turns out that he has sepsis, pneumonia and a kidney infection- he's receiving treatment in hospital but is still quite unstable.
Whilst he was in resus, myself and my sister were called by the dr to come to the hospital as he was unresponsive and his condition was deemed potentially fatal.
Fast forward a few hours and he started to respond and became more alert, he has now been moved to a ward but myself and my sister have been told that we can't accompany him there or visit.
My dad cannot communicate, he cannot advocate for himself and the state he was in, we don't believe that he is in a position to be making decisions regarding his care and treatment going forward.
He seems to be in the small percentage of msa sufferers that araffected cognitively and we are awaiting a full capacity assessment.
My question is, does anyone know of a way that we'd be able to get in to see him? Has anyone experienced this before and then had a ward change their minds and is this even legal as he cannot advocate for himself and having the massive question mark over his mental capacity, surely it is in his best interest to have someone there who knows both him and his condition inside out?
"Dols" was implemented during his last admission but it seems that hospitals only apply this when it suits them.
We also have LPA for dad.
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Daniellep1
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Thank you Paul, Yeah they are aware that we have the LPA and that we need to be consulted before any decision is made, the worry is that going off previous experience, this hasn't happened.
I just can't understand how they are the only ward in the entire hospital to no allow visitors?
Hi Danielle, a similar thing happened with my husband Martin in February but he was luckily not so ill at the time. He also had considerable cognitive impairment. I later found out that there are nurses assigned to look out for patients with dementia. Maybe you could find out who this is and make them aware your dad is there and who you are with contact numbers?Perhaps the MSA nurse can help too?
Such a hard position to be in, I hope you find some meaningful help soon xxx
Thank you so much for taking the time to respond xx
Hello I've not been in the situation but have been reassured by health professionals that know my dad,that I would be allowed in as his communicator even during covid.so this sounds horrible.Here are some ideas off the top of my head:
There should be a local advocacy association for disabled people that you could contact urgently and ask them for help- they sometimes know the legal side better. This may sound like a long shot but there is usually a hospital chaplaincy service if you could get hold of the chaplain at least they could get in to see him and what's happening.
There is one argument that because you or somebody close to him called the ambulance, that gives implicit consent to all treatment, but it may be worth trying to unpack that further now he's out of danger - every time you speak to somebody, keep repeating that you feel he cannot communicate consent to any ongoing treatment even if that's a simple as taking his blood pressure for example.
Maybe try calling somebody neutral at the hospital and find out their complaints procedure, or if that takes too long you could escalate it to the chief exec of the overall health board for your area, explaining that time is of the essence.
If that fails:
Quite often larger hospitals or health boards might have their own Twitter accounts or some kind of online presence/websites, you could start and repeatedly keep tweeting why is my dad left alone with no communicator etc type messages.
If all else fails and you're feeling desperate you could threaten to, or actually go to the media, hospitals will not like the headline of 'desperately ill man left alone on ward'.
Gosh years of advocating for my dad are making me a bit bolshy!
Please do let us know how it goes it just sounds awful.
Thank you so much for taking the time to reply to me, it's much appreciated❤ I will let you know how I get on, there are definitely a few options to try now to gain us access onto the ward.
It just seems that according to the hospitals, dementia is the only condition that is considered to affect mental capacity and cognition and if you don't have that diagnosis then there is no leeway.
Hopefully who ever I speak with today will be a bit more understanding. 💕
No worries, I think I went off on one a bit there😋in case it helps, dementia is mainly an umbrella term for a range of different cognitive impairments - my dad actually technically got given a diagnosis of dementia as well because of cognitive impairment caused by MSA. You could try that angle with the support of the MSA nurses or somebody maybe. May the force be with you!🌈
🙂🙂 No, you didn't go off on one, don't worry. To be honest, my dad also displays a lot of symptoms of dementia and his Dr actually said that "we can't say that MSA is definitely the only thing going on here, and he could also have another condition I.e dementia running along side the msa"
I'll be putting your suggestions to good use today and hopefully it'll somehow get us access to him.
Thank you again❤❤❤
Actually I missed a step you could contact his MP urgently and ask them to intervene. 🌈
If he has a sympathetic GP or neurologist or similar health professional I would be contacting them to let them know this is happening also.🌈
Hi Danielle, We have been in a similar position when mum was taken into hospital and I really feel for you.
Legally, it is a grey area, with best interests being the overriding consideration here. In considering the "best interests" arguments the hospital will also have a duty to consider not only your father's interests but balance that with the interests of other patients and staff and the COVID issue.
Your LPA is the best weapon in your arsenal. Where your father is unable to communicate effectively, he has shown demonstrably that he trusts you to be his advocate (via the LPA) and the hospital has to consider this and his right to self determination by proxy ie you.
My suggestion would be that you ask to speak to the consultant on duty and explain your concerns and that you would like to be consulted every step of the way. Also make sure they have a full, certified copy of the LPA on their file.
In terms of comforting your father, perhaps the staff can facilitate FaceTime calls via an iPad or similar - most hospitals have those available for patients now.
Ask that your concerns are noted on your father's medical records. They should do this anyway but you asking for it may help to keep them on their toes. (Whilst I have full respect for the NHS and the competing priorities on its resources, sadly the brutal truth is that sometimes you have to advocate hard for your loved ones.)
Without a diagnosis of dementia your stance is weakened so you might also ask that he be assessed fully whilst in hospital - that might strengthen your position as advocate in future.
With mum, we found the local hospice far more amenable and helpful than hospital. Mum had stays in the hospice to stabilise her, which I suspect is the plan in hospital for your father now. Hospice care does not include major interventions but they were able to stabilise mum and discharge her on a number of occasions and the whole experience for family and patient is far more empathetic and patient-centred with unlimited visits. Have you made contact with your local hospice? It is a potentially scary step, but changed everything for our family. The staff there were total super heroes, and mum really valued them.
As others have stated, the help and intervention of the MSAT nurse is also potentially very useful. It is very likely that the staff at hospital have little practical experience of MSA and they may appreciate the professional support.
Sadly, there is also an element of "he who shouts loudest" here. If you are able to communicate with the consultant and staff in a full and frank, respectful and moderate manner with just the slightest hint of the warrior and belligerence, then my hope is that the staff will respect your advocacy for your father and act accordingly.
Hi Danielle,I have no experience of hospital admissions yet, but dread the day if might happen. However, I am pleased you had some valuable, practical advice from other group members. Belonging to the group is worth its weight in gold for the support that is offered.Good luck.
Please check the hospital's visiting policy on their website, a friend was in this position, when she checked she was allowed in, it was just the staff not allowing or knowing what the policy actually is. The issue for you now will be PALS don't normally operate at weekends. Please shout for your dad, that he needs you, its extremely unlikely they will have any experience with MSA. Ask to speak to the sister or matron. I'm sad to say that he will need you, hospitals are under enormous pressure and I'm hearing too many examples of it not being good in hospitals due to staff shortages and relatives are not being kept up to date, what was there pre-covid isn't any longer I'm afraid. We put together a pack for mum with very clear instructions about her and 'her' MSA just in case.
We shouldn't have to shout but I've had to and this was pre-covid. Please, please shout!
My mum too has cognitive impairment and it's becoming very difficult.
I agree with all the above helpful comments. Write out a detailed note about yours Dad’s condition and needs and all the care and help he needs. If you have an MSA ‘going into hospital’ pack fill in all the details, give details of the MSA Trust Nurses’s and his consultants. And make sure that copies are in his medical notes and nursing notes by dropping them off at the hospital and ringing the ward later to check with the ward staff that it has been done. Tweet the hospital outlining your concerns as it does make them take notice, I had to do that once,and try to speak to the Matron covering that area. Tell them that you will help with his care therefore taking pressure off the nurses if they let you sit with him in the ward.
Hi Danielle, I don't think I can add anything to what has already been written. This is a terrible situation for you to endure and I do feel for you. Luckily, I was allowed in with my dad (before COVID) as he was unable to communicate.
I just think that this is inhumane. I do understand that there needs to be safeguards because COVID is still with us, but there are measures that can be put in place to make it safer. You could wear PPE and be tested for COVID before you visit.
Rather than have a blanket ban, there needs to be exceptions for patients like your dad. We need to keep our humanity even in a pandemic.
My thinking exactly! I think of it like, would a child who cannot consent or speak up for themselves be left alone? No they wouldn't! So why is he who at the minute behaves no different to a child? It is infuriating x
I agree Danielle,I just hope that you manage to get in to see him. The people on this site are amazing and have given some good ideas and strategies for going forward. I dearly hope you get some progress. Please let us know how you get on. My dad had MSA-C and his cognition was effected. He was totally reliant on us. We became so protective of him because of this cruel disease and his suffering, so I do really feel for you.
Thank you so much, I totally relate to you, my dad also has msa-c. I think the little bit that people do know about msa just think it's a movement disorder that only affects the coordination and ability to walk etc, the cognitive side of things are never taken into account and it seems that unless you have dementia then you are deemed to be of sound mind and can make your own decisions and consent to treatment and care but take my dad for instance, he doesn't understand his condition, what msa is, what his prognosis is etc. We have explained this in the past but he's forgotten it all and now can even tell you the illness he has. I'm very grateful for all the suggestions this group has given me and when there is any update I'll be sure to let everyone know. Thank you again x
UPDATE! dad's now been moved to a different ward, which allows visitors🙂 thank you to everyone who has taken the time to comment, offer advice and send well wishes, its very much appreciated❤❤❤
That's great news.!✨ I was thinking about the fact that you mentioned capacity. Legal capacity is an interesting thing. At the beginning we thought that it would be a case of a single capacity assessment and then all decisions would be turned over to us as powers of attorney. And some professionals also think this. It's definitely worth chatting it through with a professional who has a bit more in depth experience. The way I have come to understand it is that capacity should be continually revisited (however informally) decision by decision as to the person's level of understanding on each topic, because of the chance their understanding could fluctuate. And that there are various duties on PoAs, eg: to give their relative the maximum opportunity to be involved still. In practice, it's probably still likely you will be making the decisions for your Dad, but it's worth being aware of the nuances of PoA in relation to capacity. All the best! 🌻
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