It was actually through a mutual friend who I met on the stroke ward - she was caring for her mum who was a patient. We live in East Suffolk so word of mouth works well here as there are fewer people (but this also means fewer NHS resources). But there are care agencies that provide stroke/ neuro carers. Where are you based?
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Would you and @ManjiB be open to an online Zoom call to discuss? Also, @DavidHearnden do you mind if I share your above comment (left 3 Feb) with my local MP whose been horribly shocked at the neglect of my mum by the NHS. Theyāve enquired with PALS as to the stroke unitās thinking regarding discharging people into communities without the correct support. Iām sure the reply with be very vanilla and typically defensive (āaccording to our assessmentsā¦, etcā). But there may be scope to respond with a stronger letter when that reply has come through.
However, itās important that the MP understands how deeply ingrained the problem in - your comment sums it up.
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All good points 
Part of the reason for our long PALS complaint was really, really awful communication which caused so much more trauma in addition to seeing my mum battle her way through her 4 months of hell in hospital.
The consultants, SLT and OTsā communication was terrible. One consultant told me that my mum was āfailingā outside the hospital building when I hadnāt asked for her opinion. I despise this person as a result. The lead consultant told me to prepare for my mum to die during a bout of pneumonia in a crowded, busy ward reception area outside her room. I almost collapsed on the spot, and my brother had to travel 100 miles to take over from me. We wouldnāt leave my mum alone on the ward in case they messed something up (not an unrealistic expectation sadly).
Iām a comms consultant and a wardās culture would likely define how people communicate. I would listen with horror at repeated horrible attempts at engaging with people in the ward. Plus assessments being carried out in inadequate conditions. Together, it is disastrous.
Then after discharge, weāve had to deal with the horrendous communication of my mumās GP, NHS therapists (the latter now know my mum and me better so we get can see eye to eye), and the social worker. In no other sector or industry would this be tolerated. Yet, no one is being held accountable.
I have a massive axe to grind here, but would rather channel my anger through a positive outlet.
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I can echo everything you say here in response to Wendyās @Bagrat post.
We have been told on more than one occasion about Mumās time in this world (I donāt like to use the D word). In the early days one of the consultants/registrars said something along those line to my Sister (we took it in turns to be with Mum) and she burst into tears. I had to console her when I went to take over. Worse, this particular consultant/registrar labelled my sister as a fantasist with unrealistic expectations. I wasnāt aware if this attitude, but by coincidence she was talking to a nurse who was asking her to speak to my sister because my sister had some questions. I overheard the conversation at the reception desk and that consultant said āThat family are difficult, and I am not going to talk to them!!! )ā. She did not know who I was and was suitably embarrassed when I told her. My sister hates her to this day - I have forgiven her, for she is just ignorant and holding such feelings is not good for the soul 
Anyway, totally agree with these observations and there are many more including the GP who refused to do a home visit post discharge to review the care plan, district nurses who deliberately passed on the call to the NEXT shift etc. etc. We can write a book on this and here is not the best place to discuss this.
Thanks for the note about the physio - word of mouth. I had suspected something similar. We had tried to source via the registered physios website/register, but we wanted neuro physios and only one responded but was unable to take our case as Mum was very low mobility and unable to travel to the clinic.
We offered the gig to one of the NHS physios who stood out as someone who might be able to help, but he disappeared after about six private consultations. We will never know, but he was a locum and may have got more private clients who were not as challenging as Mum.
We live in London and in a borough where the stroke care is very poor. We will battle on as best as we can.
Wrt to zoom call with David @DavidHearnden , I am happy to participate if it will get your MP to take a leading role in this. Our MP was the vanilla response type based on other issues I contacted him on. I did not have any faith in him helping us and so chose not to āwasteā my time - with hindsight, nothing ventured, nothing gained.
Your MP sounds promising, and the Post Office Horizon scandal comes to mind when one MP James Arbuthnot took up the case and raised it in parliament. Ed Davey might be useful but he is not our MP.
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I donāt know how to explain this but several things spring to mind setting aside my distress at the ālabellingā, that occurred for you and your sister @ManjiB .
One thing that many professionals donāt seem to grasp is that many people are realistic about the future but donāt need their noses rubbed in those possibilities. This is partly due to the HCPs drive to be honest to the exclusion of humanity and worrying that families have unreal expectations when the vast majority do not.
We all plan for the future and because people in difficult circumstances who I met, planned holidays abroad and showed me their brochures, this was nothing to do with them not understanding their situation, it was to do with hope!!
Staying alongside families labelled by some as ādifficultā, (and this should never happen) because of their concern, distress and love.is doubly important in my book, otherwise communication links break down even more.
The experiences I am reading about here are very distressing, even though I donāt know the people involved personally.
Wendy
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Hi Wendy - thank you for supportive message. Sadly a few of us, @EMG72 in particular have had to put up with this nonsense.
We kept explaining that what we are suggesting is based on our knowledge and experience of Mumās physical and mental capacities. Despite the severe stroke, she was constantly fighting for her life in the hospital bed. Others around her may have given up or not had the willpower, I mean no disrespect as we are all different, but not Mum. Because we kept advocating for Mum and trying to get as much help for her as possible - difficult in a ward of 6 patients all wanting attention, we often got more than others. Again, I mean no disrespect, but we only asked - not demanded so it was not as if we were being āunfairā to other patients. Family members of other patients would ask āHow come you got this or that?ā.
I donāt want to keep repeating, sounding like a broken record, but many incidents have been horrendous and my sister has been so badly stressed on occasions, even blaming herself for Mumās stroke 
The worst bit is and remains, BLUNT denial of help or medical procedures on grounds of AGE. I have even tried to use the Royals as supporting evidence explaining that the late Queen Her Majesty Queen Elizabeth II and the late HRH The Duke of Edinburgh were afforded operations even though they were older than my Mum, besides which Mum is actually very healthy even today. Apart from the stroke, all her obs come out as excellent whenever she ends up in hospital.
Recent visits to hospital have resulted when GP /Community Team do not want to take responsibility (sorry this sounds and maybe is cynical on my part, but it is how it comes across and I am pretty good at reading peopleās behaviour) only for the hospital to bounce Mum back to the community.
Right now, only my sister and me are interested in her medical condition and needs. GPās interest is low to non-existent and will often fob us off (AGE again) and hospital has effectively told us NOT to go to A&E.
All very bizarre.
Never mind, such is life or as they say en Francais, Say La Vie.
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Since my stroke a lot of 90+ friends who I used to ring regularly started ringing me. One member of our Veterans group came to lunch and meetings regularly aged 99.
So I am very aware age is just a number.
My father in law was admitted to hospital once (he had dementia) when the care home staff recognised that he had a chest infection but the on call GP refused to visit and said ring for ambulance. The staff had to insist when paramedics were reluctant to take him ( he was awkward). When we visited he was sat in a chair where I suspected he had been all night. He pulled out his venflon so antibiotics were given by mouth. We returned in the afternoon and he was very agitated so nurse hat on, first thought, full bladder. I took him to the bathroom where he peed for England,I suspect for the first time since admission as labelled āaggressiveā, I think he was left while quiet. This distress and the admission could have been avoided if GP had visited.
Good morning. Please feel free to share what I wrote. It is based on personal experience of rehabilitation and recovery, my experience as a social worker trying to enable the rehabilitation and recovery of other stroke survivors and my involvement at a national level in developing stroke rehabilitation, viz NICE and NIHR.
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Have you looked at ARNI? They have specialist stroke physios in the south east - they use an advanced method of physio which is supposed to be more effective that normal neurophysio.
I know the clinical lead at Kings College Hospital in Denmark Hill (heās also a freelance SLT). Do you want me to ask him if he knows any independent physios in London? Or I can share his detailed with you?
My MP is Jenny Riddell-Carpenter (Lab) and has been a carer to her mum who has dementia so she understands the pressures. Also, Jack Abbott (Lab/Coop) is an MP down the road - heās very proactive and a rising star in the party. I also used to work with him but tās Suffolk - everyone knows each other! He might get involved too.
Thereās a lot of change happening in this region with a new cross-county mayoral office opening (bringing more money - thank God), and devolution of councils. Politically, MPs might be up for taking on more cases to influence things. Jenny is already considering taking this to Parliament.
I know someone else whoād be interested in getting involved - my friend set up Suffolk Mobility Services after his wife had a massive stroke 12 years ago. Sheās just started walking again with a very cool walking aid - who says progress canāt happen after the first 6 months?!
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Ah thatās terrible!
Same here. My mumās GP has stopped being supportive and refused to visit her and told us to rely on 111. This the GP who told me to ākeep mum comfortableā - we all know what that means. So Iām switching GPs for both parents.
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Hi @EMG72 - I am happy to speak with anyone who might be able to help. So please do contact your friend at Kingās College.
I will look up the ARNI Institute and see if they might be able to help.
The 6 months nonsense has to be buried!
Good news about the MPs who might be able to help us.
Keep up the good work 
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Iāll DM you with his info as heās not ready to widely promote his services (heās now left Kings and is going 100% freelance). Iāll give him a bigger push on the forum when his websiteās up and running. He gave me some great advice regarding SLT last summer after my mumās unsafe discharge from the stroke ward. And the info he gave me was invaluable in fighting for my mum.
The more I think about this thread and other conversations Iāve had about neglect of stroke patients, the more I think this whole matter could be an problem of huge proportions at national level.
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OK - thanks.
We are only seeing the tip of the iceberg here. Stroke is just not āsexyā enough.
There is more interest in space travel than stroke prevention/recovery.
Not naming names but all that money spent on trying to build rockets to send men to mars?
Just me
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I really want to swear in CAPITAL letters right now 
But youāre right.
I am trying to be stoic as much as I can and it really seems to help me.
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@Trisha2
Sorry, Iāve come in late on this one.
I canāt offer any advice, but just to let you know that Iām in the identical position to you, and I really feel for your predicament.
I want my husband home too as heās languishing in the community hospital and was told by a nursing auxiliary that heād never walk again, this morning.
I donāt know where you are in the UK, but here in Scotland the situation isnāt any better.
Hope you got something sorted out by now.
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