Learning disability care home visiting, rules and regulations.

[booksd]

I am experiencing severe restrictions on visiting my relative. What are other parents and relatives experiences of visiting their loved ones at this time? What information are care homes giving regarding the restrictions being imposed? How are they using the governments guidelines? Any help and information in this would be welcome.

[Hidden]

Hello

My visiting was restricted for my son who is in supported living.

When lockdown first happened I wasn't allowed to visit at all. We did chat on the telephone and send pictures via whatsapp. This was in place for about 3 months.

The rules then relaxed and we were able to visit but only talk to him outside in the garden, keeping a distance.

Now we are allowed to visit and enter the property but keep a distance.

I think it all depends on the company and their own house rules. Lots of establishments don't know what to do.

It was really difficult at first but the staff explained why we couldn't visit and he understood the situation to some degree.

Kind regards.

[igotafeelin]

My son aged 44 lives in an assisted living house with another gentleman. They have round the clock care provided by Health Authority Wales.

He suffers severe epilepsy and severe learning difficulties. He cannot talk and relies on physical visual contact.

Since the lock down me and my daughter have been denied access to his home. Any visits had to be conducted outside. His birthday was 3 weeks ago and we were forced to sit under a carport in the wind and rain whilst staff and management sat in his living room.

We have been so distressed and concerned for his mental wellbeing. As he cannot talk nor understand we have not had the luxury of telephoning him.

I have written to Health, Social Service and even sought legal advice all to no avail.

The management tell me restrictions are in place to protect staff.

The total lack of guidance from UK Government has led to all care homes following a set of rules that do not take into acount the service users needs.

I am totally disgusted in UK Government and Health Authority in the way they have treated my son and our family during this pandemic.

I have turned to Mencap who are aware of this nationwide problem and hope that this will not happen again.

As of today we are still refused access but have been told that we will soon be able to visit from but will have to observe further restrictions.

My son does not understand any of this so I have decided that next week I will pick him up and take him to his family home as he has been kept indoors for far too long.

[Ruasmammy]

To begin with, my brother’s nursing home was completely locked down and residents were confined to their rooms. Given that one local nursing home had 12 deaths, I appreciated the caution that the staff were exercising. Recently, we were allowed to visit, one at a time, behind a screen indoors but no physical contact and wearing mask and gloves. I found that incredibly distressing, (my brother was fine!!) Now, one of the visitors to the home has been in touch with someone who has tested positive and we are back on full lockdown. It is very difficult, but better this than my brother contracting COVID, which would kill him. He has already had a spell in Intensive Care with breathing difficulties. I never want to go back there. It is the lesser of two evils. If the staff were blase about it and taking risks I would be beside myself with worry. This way, even if something does go wrong, I will have the comfort of knowing we did everything we could.

[igotafeelin in reply to Ruasmammy]

Hi, I completely understand where you are coming from with vulnerabilities your brother faces.

My concerns as I mention in my post are that the Government have made one rule across the board so all types of care facilities are grouped the same. My son does not suffer the same respiratory problems as your brother but as he has a the mental age of 1 to 5 he has severe mental wellbeing problems. As we cannot talk to him by phone it makes it even harder.

I have written to our MP in the hope that in future Government Guidelines be more specific to the many differing needs for the service users and families.

I pray that things improve for all of us.

All the Best

Steve

[booksd]

Thank you for sharing your experiences. I feel that people with LD have been let down, they are continuing to be discriminated against, having their liberties curtailed. Families are being denied proper access to their loved ones and as the rest of the country starts to move on with their lives they are being hidden away, unable to access the community or their families.

While I understand that a few may have health concerns, many do not and this needs to be acknowledged.

[coxs]

Yes I am finding the same in my sister’s supported Living House and was told it’s down to individual providers

I think local authorities should be making sure all providers act the same

[49Twister in reply to coxs]

My son is also in supported living with one other housemate with 24 hr care. He also had all the restrictions mentioned in the beginning of this epidemic which we all understood. Now as everywhere is opening up he is allowed to visit me, come in my house and stay throughout the day but not allowed to sleep over. It doesn’t make sense as no one has been in my house apart from him. I am very concerned as there are huge staffing issues and all these strangers ( support staff )are in and out of his house which must be more of a risk than him staying at my house. I too am on the brink of bringing him home like someone else has said as it’s just dragging on. The only problem is I am 71 with health issues, he is 45 with no health issues but I feel it is definitely causing him anxiety, and keeping him restricted unnecessarily.

[booksd]

I do hope that Mencap are monitoring the situation and lobbying on behalf of parents and their loved ones. One of our basic Human Rights is a right to a family life and our loved ones are being denied this.

[igotafeelin in reply to booksd]

Today 8th Sept 2020 I have been informed in writing by the Health Authority that manage my sons care provision in his home along with another gentleman that on no account am I able to take him out of his home. This is something we have always done to assist with his health and mental wellbeing. I informed the Authority that the Governments rules on Shielding for vulnerable persons ended on 16th August 2020 but they disregard this.

They also informed me that I could not have access to his home and can only visit outside. If the weather is bad then I can access the house but with severe restrictions.

I have asked them to show me the Government rules and guidelines that dictate these decisions but have not had a reply. Mencap have scoured the Government release notes and have been unable to locate them.

I have also asked for the science behind their decisions as I find it strange that staff are allowed to come and go yet have no restrictions placed on them should they socialise or go shopping etc whilst off duty then return to his home.

What is happening here is very similar to Germany in the 1930s and we are seeing people turning against people without even questioning their orders.

We are now extremly anxious and upset and cannot understand the cruelty being used against us as Parents and siblings. My son lost his mum 3 years ago and although he has very limited awareness as he cannot talk he must be struggling trying to work out why he has been locked down so long with people wearing masks and ppe all day long. Surely his MentalHealth needs should be met and not just protection from coronavirus. He has no underlying respiratory issues.

We feel alone and abandoned by a Society that has so quickly declined into an uncaring nation all trying to apply their own versions of rules and dictatorship and a Government happy to allow it.

Come on people wake up.

[Tracidu]

I understand completely everything that's been said on this thread , my son is 36 , he lives with me , he hasnt had any support for 6months now , his day centre has no idea when they are going to open again .. I agree LD and thier carers have been forgotten and I get really annoyed when they lump them in with the elderly for social care requirements also upset when I see people of his age all going out and enjoying life and he is stuck in with me . he needs 24/7 care .. I'm 67.

His mental age is around 3yrs so he needs everything supervised or physically done for him . No carers allowance as overlapping benefit with state pension so no recognition in that area either . ??

It's a very lonely life with lots of worry for his future . I know I need to move him on as I am getting older but as you all must know it's a very hard decision especially as we lost his dad 2 years ago who was his best mate and he doesnt fully understand ...so I am protecting him from anymore anxiety at the moment... We all have different scenarios of family member with LD but we are also the same in the fact that we want the very best for them and to have understanding from the powers that be , sorry it's a long post .

[igotafeelin in reply to Tracidu]

My heart goes out to you. My son is 43 and I am 66 and he has similar needs to yours. We made the decision 20 years ago that we would try to find our son full care in the community and it was a tough decision then. My wife, his mum, passed 4 years ago and I doubt I would have coped if he was still living at home. I have since remarried and my wife now takes a loving active role in my sons care needs and has helped me share the burden that has been placed on us by insensitive rules.

You really do need to plan for the future for your son even though at this late stage it will be heart breaking.

I pray that all will work out for you.

[booksd]

All our experiences share a common thread, our sons/daughters/brothers and sisters are being kept in suspended animation, unable to do things that others are allowed to do. Why ? because organisations think that they have the right to dictate the way in which our loved ones live their lives. They have gone from supportive to authoritative in the blink of an eye and no one seems to be able to stop them.

It is unbelievable this is happening in 2020, Covid has meant that people with LD disabilities are being discriminated against at an unprecedented level. Where are the LD charities? Why aren't they out there banging on doors, lobbying MPs as many parents are.

Let us all hope that humanity prevails soon.

[igotafeelin in reply to booksd]

After two days of heated and intense discussions with many people I now have Mencap and Social Services on my case and both strongly agree that the Health Authority are not acting in the best interests of my son and our immediate family. I am waiting today to hear if the Health Management of his care provision will agree to let me and my daughter have proper visitations and are allowed to take him out of his house to assist with his mental wellbeing.

I have also made contact with his local MP so will see what happens there.

All in all after 6 weeks of sheer stress brought on by uncaring management I have now had to pass the mantel over to my daughter as I am sick with worry.

Shame on all involved in enforcing unjust rules and ignoring basic human rights from the Government down to care providers.

[49Twister in reply to igotafeelin]

Please lets know what the outcome was as many of us are in a similar position. Thanks

[igotafeelin in reply to 49Twister]

Hi, after a lot of intervention from many sources the management of the Health Authority care providers phoned me last Thursday and informed me that as we were so upset of not being able to visit our son they had decided to carry out a risk assessment to enable both me and my daughter to be able to pick him up and take him home fore a few hours. We are still not allowed to visit him in his house unless it is raining with all visits having to be outdoors and supervised.

My daughter picked my son up on Friday and had a wonderful couple of hours with him that he thoroughly enjoyed.

Yesterday I received a call from Health Authority to inform me that my son had a rise of one degree in his body temp and that they had called for a covid test. Furthermore all visits have now been cancelled till further notice.

My son had suffered a series of seizures on Sunday which is a regular Weekly occurrence throughout his life and temps do rise slightly after attacks. After speaking to staff at his house last night he was fine with no symptoms of covid and his temp had dropped back to normal. Nothing now will happen until the results come back.

All his family here feel that this was a malicious act carried out by Health Authority as they were not happy with us causing such a fuss. None of us believe in the validity of the tests being carried out with results being wide open to suggestion.

My daughter is beside herself after being told to self isolate till his results come back as she is a self employed music therapist.

The shame continues and I no longer feel we can trust anyone to help us in our plight to have some normal contact with my son. We have an uncaring Government who are using the NHS to foster fear into the hearts and minds of the nation.

[49Twister in reply to igotafeelin]

I’m at a loss as common sense has gone out the window. A rise of one degree in his body temp is hardly a high temperature particularly if his temp was normal, which it must have been as he was allowed home. I understand the caution especially if anyone has underlying health issues but everyone is put in the same box. Unlike your son my son has no health issues, he is allowed to visit me come into my house but not allowed to sleep over. This is so frustrating as no one has been in my house apart from him. He is probably safer in my house than his supported living house as the number of staff coming and going is ridiculous and most are in the younger age bracket !! It’s not getting any easier and like you I’m worried about his mental health as he has anxiety along with SLD. I do know that if we go into another lockdown I will be bringing him home. Good look and take care 💕

[igotafeelin in reply to 49Twister]

An update today to my post above.

My sons results from the covid swab came back negative. I am now waiting on confirmation that visits can resume.

My daughter and her family can now come out of self isolation after losing 2 days work. Surprisingly not one of my sons care staff were made to self isolate!!!

All this just to be able to visit my son. Shameful.

[belleJmum]

My daughter is 47 and in care because her father is ill. She has been in care for 23 years but I have always brought her home for long weekends every other weekend, taken her out for walking practice, shopping, live music, visits, meals out, helped her to have limited contact with other family members and loads of other things and all her hospital and dental needs, hair and much more.

Suddenly, in early March when I had promised her she could come home ‘night nights’, and I was expecting to collect her, I was refused entry and I did not see her at all until mid July and then it was outside and 2 metres apart. She is only partially sighted and has no real speech (though she and I do have a limited means of communication) and walks with a pacer/gait trainer, requiring much physical support. So touch and closeness is absolutely vital for us.

My husband is now in the later stages of terminal cancer and finds visits to her very stressful. I would just bring her home permanently but his situation makes this impossible. I must add that the staff continue to be wonderful and very loving to all their residents but winter is closing in now and I have had to abandon a couple of visits already because of rain or cold wind.

There must be a way that we can become the vital carers we have always been but with tests and PPE or screens? Somebody help please?

Distraught mother