Great news that they are going to do the referral for your mum. It’s been a frustrating process for you though & it shouldn’t be like that. I hope she gets that referral soon xx
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Hi @EMG72 ,
I am just catching up on some of the previous messages I read and responded to and thought I’d see how you got on with your Mum’s rehab referral.
I hope everything worked out, and hope you had a wonderful Christmas and wish you a Happy New Year.
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Gosh, thanks for asking! The referral was rejected due to her fatigue. We’ve been paying for a private neuro physio and a respiratory physio at home instead as there’s scant NHS provision.
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I am pleased you have been able to help your Mum by getting private neuro physio and respiratory physio at home. It is our experience that the NHS is not best placed to help stroke survivors.
I trust the private sessions have helped improve your Mum’s condition and wish you and your Mum all the best for the new year.
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Indeed. When i decided to stop pushing the NHS for physio, life became easier. Although I’m worried in the next MDT my mum’s team will try to push for nursung home placement. Her social worker has tried- he ignored my quote of the Care Act and kept pushing. I wish i had an advocate or independent social worker by my side.
Anyway, i read in another thread thst your mum had a massive stroke 5 years ago. Are you happy to share some advice? Happy to DM.
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Hi @EMG72 ,
Firstly, well done for all you have done so far. It is not at all easy and there are times when you feel drained, but you have to remain strong so that you can “push back” when you need to.
What I mean by that is not accepting the “No or can’t be done or is not suitable” responses when they are first put to you.
By taking time to think or question you can get an opportunity to get the help or advice you seek. Oftentimes, I find myself questioning what experts say and thinking “What makes you an expert on my health condition?” or “How do you know how I feel?”.
There is nothing wrong with asking for an explanation or clarification. For example, the NHS Physio. We had the same problem - it seems after a certain age (Mum was nearly 90 when she had the stroke and today she is in her mid-90s) some of the help on offer is not made available “as standard” but if you request it, and explain how in your opinion, that an exception might be made in this occasion you may get some. That is what happened to us. Mum was turned down for NHS physio on several occasions for reasons that were totally not appropriate. We had to accept the decision but then after a while we asked for re-referral and tried again giving additional information to support our request i.e. that Mum was now stonger and more cognitively aware and may benefit from some physio. By doing this, we got some, albeit not enough NHS physio, but it was a start.
Once the NHS physio stopped we continued doing things ourselves and bought in some private physio sessions to make sure the improvement would not be lost.
With social workers we haven’t been all that lucky, but again, just by repeating requests or providing additional information to support the request we are able to make progress. In our experience, social workers like most other government funded resources tend to want to discharge you as soon as they can.
The MDT should not be able to push you into doing anything you or your Mum do not want. In our case, my Mum had made it clear when she was well that in the event of her being unable to look after herself she did not wish to be placed in a care home. With this in mind, when the MDT suggested a care home might be the best place for Mum we went and had a look at a few and we had to say to the MDT that a care home is not the best place for Mum to be cared for. This has to be within reason and it may be the MDT/social workers may need to be satisfied that the “citizen” will be looked after as best as they can.
If you Mum is able to communicate, she should be part of the conversation where possible - this is HER care plan we are talking about. My Mum can’t communicate in this way and so we (family) are always there as her advocates and make sure her views as to the best of our knowledge are being heard and respected.
If your social worker is ignoring you (and therefore your Mum) then I would suggest you ask to speak to their manager, and if all fails, lodge a complaint. We had a lot of run-ins with the social services. They kept telling us how to look after our Mum and we kept telling them that the way she wanted to be looked after was how we were looking after her. We got the social worker to sit with Mum and a third party interpreter to understand Mum’s care needs.
In the end, the Care Plan (personalised) was agreed and since then Mum has been happily cared for at home.
@EMG72, if you are not comfortable with what you are being told, just say so. If appropriate ask for a second opinion.
You are already familiar with Care Act and so there is no reason why your Mum should not be cared for in the way she would wish to be cared for. Your Mum or you as her advocate must be listened to and respected. No one can tell you what to do. It is your (Mum’s) care plan and it is personal to her.
So when the question is asked “How would you like to be cared for?”, your answer might be “I wished to be cared for at home by my family …” or whatever you wish.
Per our experience, there are limits to how much you can reasonably expect, especially if you are not paying for it yourself, but we feel we are probably getting the best care that Mum can expect to get in her personal circumstances.
So far I have only talked about Mum, but there is also the important question of you as Mum’s carer. What help and support do you need and how do you get that? With me, I took the decision that Mum needed 24/7 care and that can only be achieved if I give up my day job. With me as Mum’s main carer, and my sister supporting us both assisted by double-up carers from social services, we continue to see a miracle in front of our eyes.
My apologies if I have not answered your question or offered the advice you reqested. Please feel free to contact us as you need - we truly believe we are now experts in providing care for our Mum and it has been a steep learning curve and each and every day we learn new things.
Perhaps one day we will write a book and then it will be turned into a film 
Peace & Love
and 
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Thanks again for your advice and encouragement @ManjiB. Especially we we’re chatting on another thread. I won’t continue this conversation here as the other thread is already well developed! 
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No problem @EMG72
It makes sense to stop the conversation as there is some duplication on another thread. As you say at the beginning of this thread, “this is really a labyrinth of a system.”
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