After sending in a formal complaint this morning with photos as evidence the home has given Mum a week notice due to my behaviour and have said they may limit my visits to an hour a day if I continue to stress the staff!
I'm gobsmacked!
Saga goes on....: After sending in a formal... - PSP Association
Saga goes on....
Written by
Spiralsparkle
To view profiles and participate in discussions please or .
58 Replies
•
Spiral get the council involved NOW! They are so out of order. Nobody should be sent there. Contact that councillor you mentioned. So angry for your Mum and you!
Marie x
The council have been made aware . Waiting for them to call me.
Photos don't lie & that is what is unacceptable behaviour to them I assume that I've taken photos. I've not once got angry with staff but expressed my concerns.
OMG unbelievable . X
In the US laws suits would be filed. That gets attention.
Spiral
How are things? I am thinking of you and your Mum. Hope you have heard from someone at the council.
Marie x
Hi.
Nothing will be done over weekend about finding a new bed.
Safeguarding rang me late afternoon to see that I was ok as she admitted if she had received that letter she would have been very upset. She told me she had spoken to the home manager to get assurances that no issues with care would occur during the weekend.
The community matron also popped into see me and I showed her the notice letter. She said as an external impartial party, I had done everything right and agreed that the complaint needed to be made. She was shocked by the letter and said I know you well now and in times of high stress at home and in the hospice I have never displayed any rudeness or disruption, just concern for Mum and being her voice. She said the letter was wrong and no way should I have been sent it. It makes out I'm causing disruption every visit and putting residents at risk. She said she would be talking to safeguarding and social worker next week about it as felt it was inappropriate. She asked meto read it again when I felt able to and make notes on how it had made me feel.
I've not told Mum yet that she has to move again as she hasn't had a good day today. Very fed up and in pain.
Thanks for checking in on me. Much appreciated x
Bloody is disgraceful hope they back you and you get it all sorted xxxx
Safeguarding have spoken to manager to get assurances that there would be no care issues over the weekend. A new placement start to be looked for on Monday as couldn't do much Friday afternoon. They want to try and get a meeting also with community matron, admiral nurse, CCG , safeguarding and social worker to discuss about next placement but as on a tight time frame now I doubt that will happen as they've not been able to sort diaries for last few weeks.
How are you both holding up?
The system stinks. When a resident is unable to communicate to have their needs met they have to rely on their loved ones to be their voice. What are you supposed to do just sit there and let them carry on neglecting her. Ben was banned from the first home he went in for respite because I arranged for people he knew and felt comfortable with, to visit each day whilst I went to see my son's and grandchildren for a few days. One of my friends questioned when she visited and he was he being taken down to the canteen/ restaurant for lunch. I had requested he be fed in his room as he hated being fed in front of others. That was enough for them to think I was sending spies into keep watch, they contacted the CHC case manager to say he wasn't welcome again. All I can think is that they had something to hide. The second home he went to were surprised at their attitude and said they were happy to have visitors and welcomed comments that would help Ben in any way. They encouraged me to make any comment to make his stay a happy one and it was. The difference I felt in my trust towards the second home was palpable, it shouldn't be like that, you should always be able to trust that he home is doing their utmost to make their residents happy and comfortable according to their needs. They should be working with you, not against you and appreciate that you need to to be confident that your loved one is being cared for properly. It's a disgrace and I'm not surprised you are gobsmacked, I know I was when advised he was no longer welcome because of my actions to ensure he was feeling loved whilst I was away. I don't understand that they can't empathise with you when they supposed to be in the caring sector, it's beyond belief. I hope that this terrible situation is soon resolved I feel she will have to move to another home as I can't imagine that you could ever trust them again to care for your mum properly. It's a thing nightmares are made of!
Big hug
Kate xxx
Hi
I chose this place as the manager took a lot of time & effort before hand visiting Mum at the hospice & getting info from me. I was assured needs could be met.
It isn't going to right all the time but a nursing home aren't even able to do basic catheter care, hygiene or personal care or basic needs of fluids.
I started informally trying to get matters resolved and as I discovered more and more that is wrong went to safeguarding as no improvements being consistently made, then started taking photos as evidence. The social worker didn't respond to two emails either so why went straight to safeguarding. Not just for Mum but other residents I was worried about.
This notice letter blames my behaviour and disruption and I've put other residents at risk and stressing out the staff with my visits. they've got something to hide and I presume don't like that I've got evidence on them now.
I've prevented a number of residents coming to harm and they all love seeing our dog. I've not once shouted or got angry with staff but have questioned has this or that been done and can you come and make Mum comfortable as been left for bloody hours.
Yes a new placement is being looked into on Monday as they given 7 days notice , willing to extend if somewhere can't be found but I will only be allowed to visit for an hour a day.
Also same issue that Mum is noise sensitive and hates people seeing her eat and they on multiple occasions took her to dining area. Wondered why she wouldn't eat!
Oh dear, they've sanctioned visiting hours now, it's not a prison it's a care home where needy folk find themselves through no fault of their own. Many of us and those working in the home will likely end up in one too. I wonder how they would feel with those Victorian rules and regulations imposed on them and their families. It beggars belief
Hugs
Kate xxx
Today I've been given the cold shoulder by the staff. Pathetic.
The lady you put me in touch with is working in an appeal letter for me. Thank you so much x
It was a long shot and hope she proves useful.
Fingers crossed
K xxx
I think she will be as she said she is livid reading the info I've sent her.
Xx
I'm so sorry to hear all this.
It's just shocking. I found it hard enough taking Chris into respite, although they were always welcoming.
It sounds as if you have some support now. I trust it will be sorted quickly.
It really has been a saga for you and the stress must be exhausting.
Big hug from Jean x xx
I'm sure in my knees with it all. Just seeing your loved one ill and suffering and knowing you can't do anything is stressful enough. Let alone all this crap we have to fight against.
It's honestly unbelievable that they are allowed to be such secretive places and what goes on behind closed doors shouldn't be questioned. In this world where everything seems to be under scrutiny can a place where many will spend their last days, not be subject to the rules and regulations that other establishments have to o should enforce. All you want is for openness, a good standard of hygiene and care, a loving environment where residents feel safe and secure especially when they aren't able to communicate their needs. It's not rocket science and how would they like to see a loved one of theirs being neglected. Good on you for taking time to protect your mum and other patients who are at risk of neglect. This front of house stuff is all very nice, sing a good song but don't walk the walk, flabbergasting and plain wrong. As you can tell it has raised my hackles again as I am reminded of Bens short stay, I dont know what I would have done if he had have to have stayed permanently in that home.
Sending love and support
Kate xxx
It taken weeks so far to get someone to take what I raised seriously. I don't want her to have to move again but it is for her best interests and safety. She probably won't thank me for it and become more annoyed with me than she already is but would sure be mortified if she knew what has happened and not happened for her there. With her own Mum she had to move her twice and then it was third time lucky with the home she ending up passing away in. They were lovely and came to the funeral. There was even an area of their garden in her memory. That home is no longer running as was 20 years ago.
They still cannot get a package of care at home in place either due to lack of capacity.
It is the worst nightmare stuff and in this modern era should not be happening. God knows what people went through decades ago in asylums.
Absolutely shocked at your treatment. However are they still in business? Should have been closed down. Although nothing really surprises me about the care system anymore, most of the time the right doesn’t know what the left is doing, or easier to turn a blind eye. Stay strong ! Jayne x
I hope some good comes of this for the other residents staying here after we have been booted out.
Hi
Good on you for doing formal complaint
To me why they want your mum moved are the plonkers that thick as even moving your mum the investigation will still go on
Hope you can get things sorted ASAP
Sue xx
Thank you .
I'm still taking notes on what is not being done & taking photos. Today I'm being given the cold shoulder by the staff.
You keep doing what your doing and if your mum is in her own room shut the door on the pathetic tw—s until you go
These people need hanging in my eyes they are not fit to be carers
Just remember it’s your right for your mum to speak up for her not them idiots
Take care as you need your health and strength also
Just out of interest what part of uk are u in
Sue xx
Hi
Thanks.
Shropshire . Our local hospital trust is also in crisis & the A&E set to shut overnight from November.
Bloody hell im glad I’m in West Yorkshire
I was one of the lucky ones to get 24/7 care x2 except nights with only one at home with chc
The downfall when Archie passed away its only me so it’s very quite now
I know I keep saying but I’ve got everything crossed for you
Hugs
Sue xx
I'm glad you were granted CHC & got loads do support. This county you hardly get anything and one of hardest to get CHC from I've been informed.
Hi
Fortunately for me I’m like a dog once I get a bite into something I don’t let go till l get things
You get all your ideas and things ready to throw at the fools and don’t let go
I will be thinking of you tomorrow go to the powers above the chc and asc if your social worker does naff all for you tell them and get somebody else and if they say you cannot well you can I had 2 idiots before I got the right one
Sue x
Everyone appears to be idiots these days!
Once you know these things you can't just leave it. They are clearly not seeing to her needs. It can't only be her. They are not able to personalise their care.
Praying it is resolved quickly.
Love Jean xx
Yes I have seen many things being done wrong with other residents. Safeguarding are aware.
Being given the cold shoulder today by all the staff.
It would be a cold day in hell before I would ever let anyone tell me I could not see my love one.There always someone in a higher position to go.Climb the highest ladder and rings some bells.And make sure you write down everyone's name and dates and conversation.
Dee
Spiralsparkle in reply to
Today I'm being given the cold shoulder by the staff. I'm noting down everything that is still not being done.
I think the consensus is to remove from here quickly but all depends on bed capacity & where. I will find out more from safeguarding on Monday.
They have put a note on the front door saying do not allow anyone to come in behind you so I guess getting ready to stop me coming at some point.
Spiral I actually wish I could make the 5 hour journey to you and stick the hugest rocket where the sun don’t shine! For the record, I’m talking bout the home not you lol
I’m beyond disgusted as is everyone reading this post!!
Where is the care, humanity and compassion, lost, totally lost on these monkeys, they need closing down!
You know how I feel, keep us posted and keep strong x 💋
And an hour ago I discovered blood in her urine...been saying for over a week I thought she had a UTI. They are monitoring to see if anymore and change the catheter.
They've had to bloody talk to me now since I pressed the buzzer about the blood.
Thank you x
Thank you. X
I am horrified by the situation you are facing. I am across the pond, and therefore under a different system, but I wonder if you would gain any leverage by speaking to an elected official about your problems. Here in the US, local and even federal representatives will hop to when called upon to assist a potential voter.
I plan to take the matter further but at moment need to sort out where we go next first.
Oh goodness Spiral I am so sorry. Your having an awful time I have only just caught up with everything that's happened today. They are absolute idiots and obviously scared something needs to be done the place sounds appalling. Who do they think they are limiting your time with your mum
What an absolute nonsense . As for ignoring you. How professional !!!! But that's just it they aren't otherwise they would see a daughter looking out for her mum . Hang on in there lovely and stay strong.
I hope your mum's okay if she's had a UTI bless her that's probably why she's not being herself and putting up with it .
I am glad you found the strength to blow the whistle on this home they should not be allowed to get away with it.
Much love to you
Lynda x
The carers on the whole are nice but not good at their jobs but alot of the issues come from higher up as they are under staffed and not well led.
Mum been in pain today, left her asleep a bit ago as had to have break through stronger pain meds.
Get safeguard team involved your mum is at risk and contact the CQC give them your evidence good luck
Well I will keep my fingers crossed that your mum will be out of there soon and in a nicer place where she will get the care she deserves. I hope the pain meds work. Your poor mum ☹
Get a good night's sleep and hopefully you will have a calmer day tomorrow x
Just catching up - this all sounds awful. I’m in Shropshire from Mon-Sat if you need to download, and have the energy. Dawn x
Hi. We will meet at somepoint, I don't think I will be able to this week though with all that going on x
Yes I had thought that would be the case but didn't want to mention I was around. Big Hugs, Dawn x
Let me know when you are back up here. Hope things have improved health wise for your folks x
Life would soooo much easier if we didn't have constantly fight the health care system for the basic care for our love ones,seem like every monday and friday I have to deal with it and when its a long weekend its a good luck getting someone to even answer the phone let alone them to show up for the scheduled visit.
Spiralsparkle in reply to
Totally agree. Everything always goes wrong out of hours. We had so many issues occur over a bank holiday and weekends.
We shouldn't have to be fighting all the time . Our focus should be spending time and caring for our loved ones.
I fear all of what we've had to battle will leave me very bitter after Mum journey has ended.
X
Spiralsparkle
Have been off line for a few days and just caught up on your posts. I am aghast, what an absolute nightmare you have been going through and then to be faced with eviction, because you care and want your Mum to be cared for with empathy and diginity. words absolutely fail me.
Continue to be strong and you will find somewhere that will care for your Mum as she should be cared for, they do exist but it is hard especially with PSP being so little known and such a complex condition. And your Mum does know how much you care, it may not always come through (sometimes us daughters are the only people Mum's can vent their frustration on) but deep down she knows you are doing everything with her best interest at heart.
Hugs
Alison xxx
PS I love your user name, it sounds so positive and always makes me smile.
Hi Spiralsparkle, it's dispictable what you are having to go through and I'm so glad your mum has you to fight for her. Stay strong you are a wonderful daughter. Lots of love Nanny857xx
I am beyond shocked at reading all of this it is absolutely disgusting and I hope things are being resolved for you. How dare they limit your visiting to an hour, I am speechless. I agree with all the advice on here and would say go to the very top, it’s something my Steve always does he even emailed Jeremy Hunt a couple of years ago as he had been waiting so long to be given a hospital appointment and funnily enough he suddenly got an appointment so bypass the hierarchy and go to the very top as they then get those under them moving a bit faster! I will be thinking of you Sarahx
Spiralsparkle when will it end? Poor you and your mum. It’s not even one hurdle after another it’s just hurdle hurdle, hurdle. Well done for taking this to safeguarding but it’s the last thing you need right now. I was going to suggest taking her to a&e to be assessed but by the sounds of it your hospital is almost as incompetent. Sending you loads of hugs, sorry I can’t be of any help to you, but will be thinking of you. Look after yourself as best you can xxx
Not what you're looking for?
You may also like...
CHC the saga continues
decision between 3 and 6 weeks . Well ,we are now into the 7th week and nothing , so I...
Safety Button / Alarm Button
Morning all,
My dad is my Mums carer and they both live with me and my own family. So most of the...
Does anyone with PSP get dizziness when looking down?
start to get blurry close up when I look down. If I'm sitting and talking to someone I am fine but...
This is for greelycat and anyone else who has recently lost a loved one
Dear Greelycat and others
I went out yesterday morning and did my local parkrun in memory of...
Veronica Mills Rocks!
How meaningful can you make your loved one's memory?
Can’t create a new post on the PSP site. 
Caregiver to PSP patient
