My daughter 57 had massive stroke year ago, she is in a neuro rehab care home, social services and nhs met the costs for 11 weeks only tried for chc but did not get it. She took ill health retiremen, so now having to use her lump sum to self finance, but at £2656 week not going to last long. The only option will be a care home, mafotity in our area are for over 65’s and mainly dementia.
I just feel she will give up being in care home, and now community stroke physio is that they can’t see point of carrying on with physio as she isn’t going to progress any further, that’s after 5 months of physio once or twice week.
Without physio I’m afraid her muscles will just weaken more. I’m absolutely exhausted with it all. The whole system is wrong
What a horrible situation for you Ceilidh, my thoughts come out to you. I’m always angry when the professionals ‘give up.’ Why can’t passive therapy be offered to your daughter? Why can’t they show some physio that you and the staff may be able to help her with some therapy to maintain her condition. I know that the NHS is in dire straits resources are pushed to the limit, but there are other options.
I can fully understand that you are exhausted with it all, but is there an option for you, with good support, to fight the decision through your local authority or your MP?
I understand your worry about a mainstream care home, this would not be any help to her at all. Nor would it give you any peace of mind. If your daughter has a social worker or advocate, perhaps you could ask for a review meeting to come to some agreement about her future options. Apologies if this has already been done.
I wish I could offer more, but know that all of us are here for you and wish you the very best to overcome these awful decisions. Best wishes Norma
Hello @Ceilidh - I am sorry things have come to this and I wish there was something concrete I could offer you, but I am no expert on these things.
If I remember right, you have another daughter as well as Dawn. When your daughter was being discharged you were looking into slow stream rehab and various pieces of information were shared with you on this forum. Are you able to contact those organisations who helped you with the slow stream rehab and also is your other daughter able to help you do some of this as I am sure it must be difficult for you to manage by yourself.
Whilst I totally agree the system is wrong, right now we have to focus on how we can work with the system to get the best result for our loved ones, your daughter in this case.
How has Dawn got on since being discharged from the hospital?
I can only repeat what has been said before which is to seek help from organisations such as Citizens advice, Stroke Association etc. and your local social services - does Dawn have a dedicated social worker?
I hope you are able to get some respite because it seems you need it with all you have been through - maybe you can start by contacting your social services to see what they can do for you and your daughter.
I am not sure if you made contact with @DavidHearnden from your earlier visits on this forum, but I am tagging David here as he is an experienced social worker and stroke survivor and he may be able to offer some advice.
I wish you all the best.
Peace & Love
Social worker is absolutely no use. She actually recommended that she goes into assisted living flat
She is transferred by hoist and unable to push or pull alarms. Which would be an accident waiting to happen
She is a trainee therefore trying to make name for herself with her bosses I think, don’t want to rock the boat by asking for another social worker as you don’t know how that would rebound on us,
@Ceilidh sorry to hear of the situation you find yourself in. Must be so so difficult for you.
Did you appeal the CHC decision? If not, and it isn’t too late, then try appealing. I think if your social worker isn’t helping as you need them to then ask for another. It’s your right to do so and there should be no consequences of doing do.
You could also try an organisation like Fightback For Justice. They may be able to help with financial stuff.
A care home really isn’t the right place for your daughter and I hope it doesn’t come to that.
As Norma has said why can’t your daughter have passive therapy. Challenge their decision. Get others to help you if it’s all a bit much for you to take on.
Wishing you all the best.
Ann
Hi Ceildh, I just wanted to chime in here again re your ‘trainee’ social worker. Social work training is very thorough, but as in all training systems, the worker has to learn. Students are assessed all the way through their courses, there is no need to ‘make a name for herself’. I am a retired social worker and I do believe you have been in touch with David Hearndon (re Manji’s post). David is at the forefront of social work practise and will probably have ideas how to help you.
You are absolutely free to request another social worker. Indeed it is no use for you to be working with someone you have no confidence in. I hope I can assure you that social workers really don’t work in a way that would rebound on you, quite the opposite. Your daughter’s situation is front and centre and everyone has to come together to make it all work. Please do have the courage to request further involvement. At a distance, I can also see that social services hands may be tied in this situation, but your daughters welfare needs to be right for her to recover and live her life. I hope that we here on the site can support you too and be a listening ear.
Sadly, as we are all incognito, we can’t call round and have a cuppa with you to help you offload, but we’re here.
Please let us know of any further developments?
Very best wishes Norma
Hello @Ceilidh - Just to let you know, I am in a similar position to you except I care for my Mum and you care for your daughter. As you are a senior yourself, I don’t know if you have worries of your own but I am a little fortunate in that I am generally speaking in good health and of sound mind (touch wood). I say this because being a carer is never easy and it more so for people like you and me. My Mum needs double up care (she has little mobility) as she cannot support herself. She is also hoisted. So again, hoisting someone who is immobile is not easy and if you are doing it on your own it might be even harder.
So please do not be hard on yourself and I can only imagine that being a parent you might find it harder to accept the situation you find your daughter in. I don’t think any parent would want to be in your situation.
You and your daughter are entitled to help but being entitled and getting it are not the same thing. I have had many difficulties and continue to have difficulties often being refused the help or care that most others would be given by default. (In Mum’s case this is due to ageism and we are learning to fight it).
Know your rights (you and your daughter).
Ask for help and if not happy, always challenge discission and be prepared for pushback, but continue to challenge. If you get a helpful person try and get their involvement - sometimes this might just be moral, but it is a booster for you. I have nurses who sometimes sympathise and agree with what we say/complain about but they cannot do anything as the system or their bosses won’t allow. However, because they will listen to us and sympathise it is a short term respite that allows you to build strength for the fight.
Sadly, in life people are different and it can be pot luck whether you get a “good” doctor, nurse, social worker etc. or a not so good one. That is a sad fact of life. I have found no two people are the same whether or not they come from a similar background, have had the same training or experience etc.
People have own beliefs, ways of working and motives for working.
I have had to take the fight with the system on many occasions both on a personal front and on my Mum’s behalf and I have had to learn to never give up without a fight and until there no further scope - usually there always is, it just takes time which we don’t always have.
In simple terms, I too have had several very poor social workers (I apologise here to any social worker who might take offence, but I am speaking based on our personal experience and it is factual). From the word go Mum’s assigned social workers were as you described.
Also, like you we were very fearful of what would happen if we complained as we didn’t want Mum to be taken into care i.e. into home or under the care of social services. This might have been down to our ignorance and lack of understanding of how social services work etc.
But, we also were aware there are some “bad apples” and we had seen how children had been abused by their parents and social services had missed the signs and there were quite a few high profile stories in the news at the times we were having our problems and so this gave me (and my family) little confidence in social services. Again, apologies to any social worker who does a good job and might take offence at this - but it is factual and I don’t want to pretend all social workers are good and nor are all bad, but our experience unfortunately has only been with the bad/poor ones 
To get to the crux of the matter, you and your daughter need help and are entitled to it without any form of discrimination or comebacks or knock ons. This sounds easy to say but can be hard to achieve. My fight with social services was long and hard and I had escalated i.e. complained to higher levels a few times. Even in the end, they still brushed it under the carpet i.e. the matter was not resolved to our satisfaction but luckily we were wiser and Mum was better and stronger so we decided to let “sleeping dogs lie” as we wanted to focus on Mum’s care and didn’t have time to pursue “justice”.
Ceildh - do not fear the consequences of your actions. Do what you must and what you think is right.
Not rocking the boat will not do you any good - you will be no better off and possibly worse off.
Rocking the boat will get you a new social worker and yes, the bosses may also be bad i.e. the social worker trying impress her bosses might be under the directive of her bosses and so her hands might be tied or she is too weak/inexperienced to fight for your rights.
You can challenge the bosses too - I did.
In the first instance you need a change of team. I appreciate it might be hard for you, but try and get others to help - your second daughter and other services - citizens advice etc.
Please feel free to come back with any questions you might have.
I am no expert, but I am an expert in the care of my Mum and no one knows how to care for her more than us and it is hard to get the help we need, but we keep asking and asking and asking again. In the end something usually happens.
Wish you all the best.
Yes that is where she is slow stream rehab we have an apprentice social worker, who is useless, yes my other daughter is doing as much as I am, if not miore
Good morning Ceilidh - You have 6 months to appeal the CHC decision. The appeal needs to address the 4 key indicators - nature, intensity, complexity and unpredictability of someone’s care needs. If you will let me I will help you appeal on your daughter’s behalf.
As has been mentioned, I am a stroke survivor and a qualified social worker. I currently work with nurses to assess eligibility for CHC funding.
Let me know if I can help and we’ll talk out with this site.
Take care - David Hearnden
Hello @Ceilidh ,
I note David (@DavidHearnden ) has kindly offered to help you as per the below post.
If you wish to take up his offer of help, you should discuss the case in private by using the mail function of this forum as it would not be a good idea to share private details on this forum.
I am sure if you agree, David can send you a private message.
The mail function can be accessed using the personal messages icon
I hope this helps and I wish you all the best.
ManjiB
Yes we are going to appeal. As they just down played her needs eg a care worker who was at meeting said she could move her bottom up a small amount
She can sometimes move her bottom 1/2” depends how tired she is. Then it takes 2 carers to transport her by hoist to wheelchair, therefore when I tried to dispute this I was ignored and it was put down could assist with transfer That is just one example,
It is very kind of you to offer help, I will contact you if we need advice. Thanks again
Yes private message of David would be most helpful. Thankyou
OK - I will leave it with you and David.
If there is anything else, you know you only need to come here and message us.
I note you are appealing and that is definitely the thing to do.
Try and get as much information as you can to support your case and don’t let the team browbeat you - they will try and they will “gang up on you” - again my personal view based on what happened to us and what continues to happen to us.
Always try to have someone e.g. your daughter to support you. If you are on your own they can run rings around you.
Wishing you all the best.