I would love to come on here and say my husband has had wonderful treatment from the NHS since his stroke but that would be a lie.
We have waited months to get a shoulder support for his affected arm As the first one was hopeless. Asked for a different type, waited another 5 weeks and this was too small even though he was measured. Now we have to wait another 5 weeks for a bigger one.
This morning a speech therapist turned up for an appointment she said we should have had a letter about together with a report. We have had neither! It would have been a 50 mile wasted round trip for
her if we had not adjusted our plans as we were literally going out as she arrived.
He was told he needs hearing aids but thereās a 55 week wait for a ENT appointment.
These examples are just in the last couple of weeks. It has been a catalogue of hopeless mistakes and letdowns since last winter.
Hello Tracy - I hope you feel a little better for getting this off your chest
I think it is time for you to escalate this so that you can be heard. Clearly, you are not being listened to and maybe you are being too nice to complain.
What is happening or rather not happening is clearly affecting both you and your husband and it is not right and it is not fair. The NHS is not brilliant and for some it is a total disaster. I am not going to try to defend it as we also have been on the receiving end of some not so good service. In addition our social services is equally bad and the whole care in the community is lacking.
If you are up for it, I would like to suggest you write down all the things that you are not happy about and then take this to your local MP. You can see or talk to your MP and ask them to follow up on this for you. Ask them to take it up with Wes Streeting who is Secretary of State for Health and Social Care.
Depending on how good or indifferent your MP is you may get some improvement in the services you are getting.
Also, you are perfectly within your rights to lodge formal complaints against all the parties who have come up short in helping you since the stroke from your GP through to the hospital consultants.
It may take time and in some cases it may not actually result in a positive outcome or the outcome you would like, but at least you will be heard.
Do not be afraid to complain - donāt think that things will get worse if you complain. They canāt possibly get any worse than they are now. What you will find is that once you complain, you will feel better and people will start listening to you.
Hi Trisha2, unfortunately you are not alone.
I had my stroke in February 2023, I went to A&E and didnāt have a long wait. Once with a doctor it was all systems go, a stroke doctor rushed in and organised a CT scan, I was told it wouldnāt tell them much and would have to have an MRI. I was given tablets and an appointment for the Stroke clinic for 3 days time.
The clinic nurse did my checks BP etcā¦ the doctor said I would need a 24 hour BP monitor but it was a 6 month wait at the hospital, so ask your GP. They made an appointment for an MRI in 2 weeks and then promptly discharged me into the care of my GP.
No follow up appointment to see if Iād got any lasting effects because the nurse said lasting effects donāt always show immediately after a stroke.
I had my MRI and I didnāt get any results for 8 months and that came when I had an appointment at the pain clinic, I was asked about the details of my stroke and she had the results online.
I have been left with numbness down my right side which affects my balance and walking, I thought Iād lost my hearing in my right ear but it turns out itās Tinnitus and my cataracts had to be done.
My GP has been brilliant any questions I asked she answered and if she didnāt know she found the answer and rang me. She helped with getting me walking sticks and also supplied information so I could get a Blue Badge.
Two and a half years down the line I was recently told that if Iād had some kind of physio or therapy my numbness perhaps wouldnāt have still been so bad. That we will never know but I do think the hospital let me down substantially.
I hope your husband is able to cope with life after a stroke and I wish you both best wishes for the future.
Hello @Anniemum13 - welcome to the community and thank you for sharing your experience which as you rightly point out is not exceptional. A lot has already been said on this subject here on this forum and there is nothing more I can add.
Hopefully things are working out for you though they could have been much better had you been in a different place at the time of the ālottery drawā.
Hello @Anniemum13 ,
Youāve been let down by the āsystemā for sure.
Iām tired right now and need to go to bed but want to say something about the numbness before I do.
My stroke was in June 2023. I was fortunate to have around 4 months physio afterwards but was then left to get on with it. I had numbness all down the left side but regained a lot of sensation with sensory reeducation. The numbness is still there, however, despite having private physio/OT since the beginning of this year. In fact, Iāve become a lot more aware of it and a few days ago, I had what I would call an explosion of sensation during the night down the left side. Itās now even more uncomfortable but I donāt see it as necessarily a bad thing. My body is still trying to sort itself out and I have to keep going with the flow even though I donāt like it.
This has been my experience so far and I know stroke is different for everyone. But perhaps it might help to know that your numbness may not have gone away even if you had had physio in those early months.
Iām waiting for a neurology appointment for something else but Iāll definitely be mentioning the numbness. If I learn anything useful, Iāll be posting it on here.
