Rant time!

Hi everyone. I will apologise before I start but I really need to get this out of my system. I’m 6 years post stroke following a hemorrhagic stroke which paralysed my left side and unfortunately I still have very little movement in my arm and hand despite using various pieces of equipment and having Botox yinjections for spasticity and there lies the cause of this rant !!!
I had an appointment to have a Botox injection yesterday, having not had one since February last year.
I had my first botox injection whilst still in rehab and was told at the time that I would need regular injections, ideally every four months for the botox to be most effective. I have never had regular injections, with the time between getting longer and longer. I was told yesterday that my next appointment won’t be for another 10 months if I’m lucky.

Now I know that botox is a specialist therapy and that the NHS is struggling but for heavens sake, King’s College Hospital London saved my life in February 2017. I then spent 5 months in various hospitals with the last 12 weeks in rehab, which I’ve no doubt cost an absolute fortune. They then sent me out into the big wide world with no after care to speak of, I am now being offered random appointments which are basically a complete waste of the consultant’s time and the NHS resources because the appointments are so random and therefore the injections are ineffective. It’s like starting all over again every time I have an injection.
Following our discussion with my consultant yesterday I didn’t have an injection and have decided I won’t be having any more injections in the foreseeable future but that they will keep me in the system in case things change and I feel that I need to see her.

It must be sole destroying for the NHS staff when they are unable to deliver, what could be a life changing treatment, if only they could get on with the job properly.

What makes me so angry is that, as usual, stroke survivors are at the end of the queue when it comes to receiving after care and the necessary treatments and therapies, whilst the powers that be throw millions at things like obesity and drug and alcohol addiction. Whilst I’m not unsympathetic, I do feel that stroke survivors get the short straw every time and although after care seems to vary depending where you live, going by the posts on this forum, there seem to be more areas lacking than not.

Thank you for taking the time to read this. I really needed to let off some steam.

I hope I haven’t caused offence to anyone whilst ranting. Have a good weekend everyone.
Regards Sue


@Susan_Jane you rant away. that must be so frustrating for you. Like you say no point having botox injections so far apart as there’s very littke benefit to you.

Sending you love & hugs :hugs::hugs: xxx

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Hi sue there’s nothing like a good rant but don’t get me started my husband had his stroke last july spent 4 months in hospital waited all that time to get to rehab they said he would get more physio but nope that didn’t happen. He’s now home after a long 9 months. Getting community physio at the moment but that’s only for 12 weeks so we have had to look at a private rehabilitation we go on monday for a assessment. I agree with you ss are at bottom of the list. Keep smiling :slightly_smiling_face:

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Hi Lynne, I feel for you and I hope your husband’s recovery is going well. I waited 12 weeks for an out patient appt for physio after my discharge from hospital and then was only allowed 7 weeks and like you had to start paying for a private neuro physiotherapist. We have spent £16,000 so far on physiotherapy and pieces of equipment.

haven’t seen a Neuro Physiotherapist for 2 years and feel that I need someone to check me over and hopefully give me some advice or tips going forward with my recovery. We have chosen a therapist locally to us and I’m booked for my first assessment on 5th May at the grand cost of £105 and then £95.00 an hour thereafter. I have a daily exercise routine that I do with my husband’s help but just feel that I need some professional help every now and again.

Best wishes to you and your husband and thanks for replying to my rant.

Regards Sue

If you want some help with your hand and arm then have a look at https://www.armsreach-ot.co.uk/ or www.arni.uk.com

Thank you. I have worked with an arni instructor before but their method of therapy didn’t work for me. I did make enquiries with a view to giving it another go and I was surprised how expensive they are now (92 an hour), so I decided to stick with a neuro physiotherapist.

Thank you for replying

Regards Sue

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Hi I’m 57 I had 2strokes nearly 18 months ago the 1st in September 20th was in overnight then released no meds or nothing then had The2nd one September 24th was in for 15 days then had occupational therapy twice a week at home for about 1hour at a time then had to wait 6 months for physio twice a week for about 3 month they ring me now about once a month but are ready to sign me off I’m still useing a zimmer but they said it’s down to me so I went on google looked up exercises for recovering from strokes found flint they send you exercises via email or ones you can do on line I am doing them and am improving but by bit just vary them every so often and you will improve just takes a while try to be positive all the best

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That’s a lot more than the ARNI instructor near me. You must live in a more expensive area! Best of luck with your neuro physio.

I live in Bradford I am lucky though I have a lovely woman who has helped me a lot and a family who always try to help My younger brother said something to me that has helped me a lot He turned round to me and said It’s not as though you’ve been in a car accident everything can work again it’s just your brain playing tricks on you And in my case it is i have been extremely lucky to be told I have no permanent paralysis it just my brain re-routing it’s all down to the individual try as hard as you can you’ve everything to gain I know it’s a lot easier said than done but try to remain positive and you never know

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“just the brain re-routing” is no small matter !!!

I know it’s a life changing challenge but what can you do I remember talking to a physiotherapist at St Luke’s and they said to me we are not miracle workers we just try to access and adapt to make your life as near to normal as we can I keep adapting exercises to try and wake up and challenge different ares and so far have been lucky I also remember when I was young my dad worked at a glass factory and a pane of glass cut his wrist and damaged one of his guiders he was in Pinderfields hospital for ages and they told him he would never be able to use that hand again he tried his best and refused to be beat and he did hit his hand wrist and fingers move perfectly try your best you never know