Feeling forgotten

I’m so frustrated and totally peed off with my doctors surgery :pensive: I feel completely let down by them.
I asked for help with physio/rehab as my mobility and balance is shocking. I got told I didn’t qualify for neuro physio after having an Intracerabel heameraghe because I asked to late for help, how was I supposed to know this was available at the time nobody told me and I have struggled to get where I am now completely on my own. But I’m still struggling, I looked into joining a gym and asked for advice and was told that I could go through my gp for a referral for exercise. I booked a telephone appt for today and basically felt like I was asking for a new heart or lung :rage: why is it so difficult for them to understand that I want to try and do everything I can I just want to cry and give up :cry::cry: so now I have to wait for him to speak to one of the practice nurses who from the sounds of it is just going to give me an exercise program.
How do people get help? Sorry for long whining post :pensive:

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Jan,

No, don’t worry, you are right to whine. It’s common for stroke patients to feel neglected one way or another. We are neglected. Of course, one rule is golden after a serious stroke ; wait for nobody. Take matters into your own hands, get active, get exercising now, I learnt Qigong entirely from youTube, but I do it every day, and my body thanks me.

My mobility and balance is also shocking, and that dissatisfaction is good, because it will propel you forwards, finding your own solutions as you go. You will overcome many barriers if you learn to take matters into your own hands. Trust your instincts, have faith in your recovery. Of course help is good, and motivating, but trust me, it’s possible to be in the driving seat when it comes to managing your own recovery.

Obviously I hope you do get the support you need. Myself I’m waiting for a Doctor’s note so I can reapply for a grant so I can have more physio… meanwhile I carry on working.

Good luck, I hope things pick up soon, ciao, Roland

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Hi, I totally get it.
After Cerebral Infarction and given thrombolysis treatment basically they needed the bed I believe, so was sent home with discharge saying “no significant deficits” after 48 hours. Once home it became apparent that my left side was effected. Care was passed to GP, but it has taken over 5 weeks to get decent response, if you can call it that, referring me back to Stroke Unit, how long I will have to wait…only the fairies know!

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@Mrs5K / @Nicola_Moderator someone.,.

The OP is at threads 39612 and 3

And this is

maybe youd use the facility to merge the threads (and then delete this advisory?)

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Hello @Jan3

Welcome and sorry you have had reason to join the merry band here.

I did reply to your other thread. I guess the forum software confused? It still confuses me after a couple of years and a few thousand posts!

Caio
Simon

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In many ways I don’t have a helpful answer. My own experience hasn’t been wonderful and I’m going to mention a couple of points that I don’t spend much time thinking about because it doesn’t help.
When I had my stroke I was taken in by ambulance in good time as my wife had the foresight to realise what was happening.

At the hospital I walked to a general ward as there was no room on the stroke ward.
I was on that ward waiting for ten days to a fortnight. During that time I remember being terrified, hallucinating and trying to leave to go back home. Two hospital heavy security stood by to deal with me if necessary. I was as weak as a kitten. One little nurse had me pinned against the bed until they had me on my back again.

By the time I got to the stroke ward I was bed bound and almost completely unable to move.
Physio was available for a short session every ten days or so. I didn’t make much progress.
After two months I was home bed bound and totally dependent.

The will to improve has seen me slowly advance over two years. I fell over a lot of times. Bruised but not beaten I gradually became able to stand and walk a little. I am not in as good condition as I was when I went in hospital, but do experience slight improvements slowly and steadily as time goes by.

I think I could have had a better deal, ended up in a much better state, but I am alive and there is much to be said for that.

Cutting this long story short – you will improve, don’t wait for help, but don’t push yourself so hard that you fall over. It hurts!
Be kind to yourself, laugh, smile and don’t be too scared to enjoy yourself.

This is a !!##ing horrible thing to have happen to you, but you aren’t alone and you will find your way. Shout out, someone will say ‘Hi’.

Getting myself a laptop once home and finding this forum have helped me enormously as my wife and I live a pretty isolated life now.

I really should get out more you know
:stuck_out_tongue_winking_eye:

keep on keepin’ on
:writing_hand: :smiley: :+1:

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Im sorry youve had such a bad experience. It seems there is alot of it about. I woke up on the Friday having had a stroke, a gp at surgery told me nothing wrong. Went home spent my birthday in bed, early hours of Sunday i said to hubby something is definitely wrong. But occupational health were wonderful and came to me twice a week. If i were you id go back to gp and ask how are we going to move forward from here. Best of luck and stay in touch

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This sounds like a disturbing justification (?) - I think the charter of the NHS is to provide the care and support that the population needs to have the best healthy life they can

The aims of the stroke association are definitely explicitly stated as giving people the best post-stroke life they can have so I would call the stroke helpline and ask them how you can get the help that your GP is denying you.

I wouldn’t do this in substitution for the complaints process but in parallel. I’d also look on the web for your local health authority relevant services and attempt self-referrals

Caio
Simon

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@Jan3 I’m not sure what you’ve been told is right and if you have the energy I would ask for a 2nd opinion. I had neuro physio after my stroke & when I stopped progressing they signed me off but said that if things start to move forward or I need to build up any strength or even go backwards I should get referred again. This suggests to me, at least, that it isn’t too late. Medical professionals often say after a period of time you won’t progress but I think we have all proved that if you are prepared to work at it you can improve for many years to come. The syroke association do hold some exercises sessions via their online activities hub or I think you can find them on YouTube too. But definitely try your GP again and insist they refer you.

Good luck

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Hi Simon i have merged the topics & closed the other thread. It don’t have an option to delete your advisory post though. Hopefully @Nicola_Moderator will be able to sort that part when she gets an opportunity.

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It’s fine you can leave it

I think with both threads being merged @Jan3 Will have a response that will be easier for it to follow and for people to be additive in their comments rather than duplicative

:slight_smile:

Thnx

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Hi Jan and welcome to the forum. I must say I was luckier than you in that I had support for 6 weeks when I left hospital from an early discharge team. Like many have said my balance is the area I really have to work on. I’m sure there are exercise videos on the stroke website for people at all different stages of their journey that might be useful or I’m sure YouTube will have stuff on. I am lucky in my area that there are strength and balance classes which have really helped me. I go twice a week and the trainers send a WhatsApp every week of exercises to practice. If you like I’ll ask if they will add you to their list? See if there are any classes like this near you. I went through age uk to find mine. Hope this helps. Just keep exercising the best you can as repeating stuff helps require our addled brains . Regards Suzywong x

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Hi Jan. I had gym referral but it was organsised by the local council’s Leisure Services and they reffered me to gyms that had a ‘level 4’ trained trainer. If your council can’t help, nor your doctor, just try asking gyms if they have this level of trainer. He/she would still be able to help with a tailored regime; even if it means not getting the gp referral discount. Most/all gyms should be able to help. I have been going for 2 years now; two mornings a week.

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