Human rights

My husband has been in a hospital for rehab for the last 2 months. Now because the hospital is taking different patients because of the pandemic they want the bed. I want him home but because they are unable to get a care package together the hospital are placing him in a nursing home. I have not seen this home and we will not be allowed to see him. Is this allowed to happen? Does he have any human rights, he has got a bit of dementia. This is happening tomorrow we have said goodbye and don’t know when or if we will see him again.

Hi Dido. Very sorry to hear this. Have you spoken a GP or Health Professional about what’s happening? We recommend you contact our Helpline about this also, as they’re able to offer professional advice on a wide range of issues affecting Parkinson’s patients and their families. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.

Hope this helps.

Best wishes,

Owen,
Moderation Team

I read this with horror; what’s happened to being ‘unbeatable’, taking control, being allowed to make informed choices and Parkinson’s not defining us or controlling us? I honestly feel that this pandemic has negatively labeled me as a person with Parkinson’s and that my newly acquired badge of vulnerability may very possibly have serious implications for my options in terms of treatment both now and further down the line should I get this virus. Maybe I’m just having a midnight panic but I don’t understand how this is being allowed to happen without challenge.

Hello Dido
I read this last night and wanted so much to give some reassurance but I just didn’t know what to say. I was horrified at what was happening to your husband and you and family and Jackson’s response is not a million miles from my own. I may not be much help with the situation you are in, but I want you to know we all here on the forum do care. It’s not much, but is sincerely meant.

Thanks for your replies. As far as I am aware there has been no government directive stopping visits so not sure this is legal.

I just want to echo other people’s responses to your predicament. My late mother was in a residential home for the last year of her life and during that time there were several occasions when the home was quarantined because of sickness and I could not visit her, including two weeks just before her death. That was bad enough, but now anybody with a relative in a care home is facing months without being able to visit. It is terrible.

HI Dido,
I have been worrying about your situation all morning. I obviously don’t know the details and it may ultimately be that the option suggested is, sadly, the only viable one, but as I understand it, your husband has not got any sign of coronavirus, the issue seems to be the potential for care agencies to put enough support in place to enable you to care for him at home. Unfortunately, once in a care home, he will be subject to all of the rigour in place in relation to the Coronavirus. Has there been any serious exploration of options that are available or has this been a sudden decision? I am sadly unqualified to give any useful advice. I can only offer my opinion and my thoughts which are sadly lacking in terms of practical help but I found this on the Alzheimer’s Society website and it may be a little relevant to your situation -

I know you mentioned that your husband has a little bit of dementia so you’ve quite possibly already contacted them, but the Alzheimer’s Society may be able to give you some answers or explanations as to the situation you find yourself in. It seems to me that the least that could be expected of an allegedly democratic and civilised society is that somebody understands the reasons for and legalities behind such an authoritarian course of action even if it turns out to be the only possible way forward. We are living in unprecedented times in terms of this new virus but it doesn’t seem like a reason to ditch all previously held values in relation to how the state deals with ’ vulnerable’ people.
Please let me know how you get on.
Jx

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Thanks for your concern. We knew he couldn’t stay in a hospital indefinitely but because they were unable to get carers I didn’t have a choice. I Amin the process of trying to get a team of people together so he can come home. I think people with Parkinson’s are treated as non persons in this region, maybe it’s just this region

Hi Dido,

I’m really glad that you have found a way to bring him home by putting together a team to help look after him. I just wanted to suggest again that you get in touch with our Helpline on [email protected], or 0808 800 0303 for advice and support with this.

Best wishes,
Mara
Moderation Team

Thank you for the update. I wish you all the best in trying to get your husband home and would really like to know how you get on. Sadly, I don’t think that the problem you’ve highlighted is restricted to your area. Like you, I fear that policy regarding ‘managing’ those of us with Parkinson’s can be largely dependent on cost factors. I know cost factors have to be taken into consideration but I think the balance is too far in their favour and with the current situation only just beginning to unfold, I’m more worried than I have ever been about the future, both imminent and longer term. I hope I’m wrong, but time will tell. Take care. Jx

Am also very shocked to hear that this could happen. Of course no one in their right minds would want to put anyone at risk, but there are competing issues and “ rights” here. I cannot see why any care home could not put in place procedures which would allow relatives to see residents, without putting ayone’s health at risk. If employees of the residential home are allowed to go in and out, then there can be no argument surely.
A quick search online found the following exerpt, part of a longer article from The Guardian. I would be tempted to do some further research and make sure you get to see your husband, even if it is through an open window.

“Dr Lucy Series, a senior research fellow and lecturer in law at Cardiff University, said: “Care homes do not have legal authority to simply place residents in preventive isolation without some lawful authority, like the Mental Capacity Act 2005 deprivation of liberty safeguards. If they have no clear legal authority, and this is a blanket lock-down, this could potentially amount to an unlawful detention.

“Restricting access to visitors is also an interference with fundamental human rights to family life that would normally require some kind of clear policy to implement unless it is a very short-term measure,” added Series, who also holds a Wellcome society and ethics research fellowship.

Lawrence Gostin, a Fulbright fellow and law professor who specialises in public health law, said that while we must take “aggressive measures” to keep nursing home residents safe, “there is no legal authority and therefore there can and should be no lockdown. It should – and could – be accomplished on a voluntary basis.”