Hi everyone, my stroke happened in 2017 and at the time, after 5 months in hospital, I was discharged with very little help and aftercare. I had hoped that things had improved since then. Today whilst out in Tesco doing my daily exercise regime, we were approached by a man pushing his wife in a wheelchair who had a stroke in 2020 and it would appear that unfortunately has changed. They are struggling to pay for private neuro physiotherapy and were trying to get their heads ariund the benefit system. She has had no follow-up appointment and has never seen a stroke nurse.
They had so many questions and enquired about my FES machine. We gave them our number and said to call if they had anything to ask about. If we speak again we will definitely recommend this forum.
I can’t believe that things have not improved, don’t know if we are just unlucky in the South East. It brought back so many memories and has made me see how far I have come.
I’m eighteen months into, what do you call it? Recovery?
This Forum was all I had apart from my wife, after the hospital bit of the experience.
I’m not the only one to find a lot here. Somewhere to find out how others cope, to have a laugh and share a little light banter. Somewhere to have a moan and lay all the problems end to end. The reaction of the world seems to be that they just don’t know what to do with us.
I reckon, just get on with it and start finding your own way, lets others know and . . .
@Susan_Jane it’s sad to hear that things really haven’t changed much in that time. I think some of it is a postcode lottery as I had 6 weeks home physio after discharge then a further 12 months of hospital physio. I am however still awaiting a neuro psych appointment.
Great that you’ve exchanged contact details and will be able to offer your experience. Hopefully they’ll pop along to the forum too.
@Mrs5K you sound like you have had the best experience.
I have to say that I really can’t fault most of the post stroke support I have been given - but some I have had to push for quite hard. I do live in Zone 2 London though…
eg I was given 8 OT appointmnets to start and now I have had 30ish and they are ongoing because I agreed with my OT that she would say no I need to keep seeing Kieran. And I do need her. similiar for psycologist.
My GP is very understanding and I have had most of the things I need I think.
few annoying bits - neurology in march 2024 and soem other delayed stuff but oevrall it’s been ok.
I strogly suggest that these people put pressure on their GP - use some tips and tricks - ask for double appointments - don;t take no for an answer - keep on them.
I do it and it seems to work most of the time.
So good luck and let me know if you need any specific ideas!
I’m in Oxfordshire and have had very little support from the NHS since I left hospital/ stroke recovery unit and trying to get hold of my GP is almost impossible. I’m an ex bank manager and was encouraged by my husband (who also works in banking) and various colleagues to take out critical illness cover about 20 years ago. I moaned about the premiums at first but I’m so glad now that I carried it on. I’ve paid for every treatment from private neurologists to physios, acupuncture, hypnotherapy, even a private GP appointment when I was desperate. I’ve had no follow up contact from the NHS at all. I’m not going to say I’m lucky to have the critical illness money as I would far rather not have had the stroke, but it has made my recovery less stressful. I feel for everyone out there who has had a stroke and has been left abandoned by the NHS.
There’s a lot of regional variations and lots of complexity in the way that information is presented for political purposes etc.
One issue is that political forces uses health issues as fundraising leverage in public. The mechanics in the background are actually making progress but it’s difficult to sepadrate out the advertising or agitating froth from the reality
Both England and Scotland have published stroke care pathways. Adherence isn’t what it should be yet. the pathways have provided a benchmark that gaps can be expressed against and then become undeniable statements of need.
The UK ABIF with a Welsh MP ( rhonddabryant Twitter) has been successful in adopting into legislation and government commitments that will drive progress. that progress is slow, much slower than it should but it appears to be working
There is grounds to suggest that cancer charities are much better at securing resources than the stroke charities and that cancer gets a disproportionate share .
We are apparently 29,000 registered users but actually we are 800 ish users (250 active) with 28,000 abandoned IDs. If we could improve that we would have a voice but it takes a lot more coordination than this forum currently has.
There is an AHP strategic lead across several health authorities where I live who has a vision and he’s recruiting and adopting people around him who can realise it. I too have a vision that he has embraced - although I haven’t yet got anybody in the stroke association or different strokes to engage but at least they’re aware. One of the aims of these hubs is to explicitly target the transition from acute to chronic care. As (if?) he succeeds the plan is to export his “hubs” elsewhere (another uncertainty)
There is also great variety in the individual cases within health authorities. It appears a small percentage -independent of where they are - have a wonderful experience from entering & throughout, a small percentage have truly dreadful experience and most of us have a pretty average experience in aggregate with a highs and lows
There will never be a time when there are not things that urgently need to be improved, there will always be a struggle for more resources.
Structural changes in the health service brought about by the rise of people’s demand for insurance based provision of GP services and upwards caused by the current over subscription of available services in the NHS - in turn caused by the demographic change of an ageing population - and combined with digital capabilities -there is an explosion of technology startups with rehab related tools combined with AI and communities that will be the grandchildren of this one will also drive systemic changes - the changes are generational ‘not next year’
It’s like having 10,000 spoons when all you need is a knife.
Post-stroke care was not good for my mother, either. All she had, in the end, was Dad and I.
It’s why I am on this forum, to give my love and support to all of those who have had strokes, and to their caretakers. They are just left on the side of the road. My heart breaks for stroke patients with no loving families. I don’t know how they’ll ever make it.
I’d love to meet the man of my dreams but I’m worried about meeting his beautiful wife!!
But I’d also like to actually have a real relationship with a woman as after my divorce (didn’t rain on my wedding day though) I just didn’t find anyone to replace Helen. I tried but now I need a good few more months on me. Then I will try again.
I think that it’s ironic that many of us had that critical illness cover it one way or another before strokes but not when. #me too
I do have a freedom pass!
Matthew you are so kind and thoughtful
But life does have a funny way of sneaking up on you when think you’re ok. don’t you think?
I went through a terrible ordeal with my mother after her stroke, as you know. She recovered physically very well, but her emotional was ruined for good. She just got progressively worse over time (OCD over temperature, pacing for hours, combative with dad at night, no attention span, etc. We did everything to help her, but to no avail. God let her rest now!
We had to come to accept my mother for what she was after her stroke. I had to go through a lot of “coming to terms” in the past 2 years.
It might sound selfish, but never forget the loving devoted caretakers of stroke patients - we are just as lost as our loved ones with the stroke.