Been let down

Hi just thought ask if anyone else within this forum feel same as me that they have been let down by their GP first of all my Gp as not been in touch with me to ask how coping since my stroke which I had nearly eleven months ago on Boxing Day last year the only Doctors that have been in contact with me through appointments were both locals who don’t know me at all although my Gp surgery did send details to local stroke rehab team for me to have physio treatment back in February they did not give appropriate information to them so they did not contact me when rehab team ask for more information from my Gp surgery they never replied to them so I only received contact from rehab team at end of September and they trying to sort some treatment to start hopefully in next week or so no confirm appointment as yet this is nearly eleven months on from having my stroke on top of this I have also been diagnosed with heart failure which received treatment from heart failure nurse from local hospital and had another echocardiogram recently waiting results on this but my GO surgery were very slow in responding to request on any new medication requested to be started by my heart failure nurse and the cardiologist consultant from local hospital so once again feel let down from them also I have try to ask myGp surgery to sign me of from work In definitely as with my present condition not going to really improve to the point that I able to fit another to be able to work due complex conditions I have on top of the recovery of stroke and having heart failure I also have chronic osteoporosis which effects most right side body especially my right knee and hip and as my stroke effect left side body I am completely of balance with my body and with heart failure I can get breathless from excursion so only walking short distances can cause issues so why my Gp surgery won’t listen to and see I am not going to get back to any kind of work I am only 61 so can’t receive state pension till 66 or 67 so only have my small NHS pension plus got refuse pip and only receive low end of ESA payments every two weeks trying to get put in high group and try to get my pip re look at but it’s my GP and doctors surgery who feel let down by most and just wonder if anyone else within this forum and experience similar situations with their Gp

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@Kaz61 your not alone. Mine is a long story and I’m starting to feel a little tired telling it so I won’t bother.

One thing I will urge you to apply for pip again. I am the same age as you 19 months post stroke and state pension 67.

I was refused pip so we rang them back and my husband spoke for me as the information I provided did not resonate with what they wrote. It’s worth a try and I know a few people have retried and succeeded so it’s worth a second try.

Lots of luck Loraine

Hi Loshy thank you for kind reply yes I am for reconsideration on pip and if it gets refuse again I have local benefit experts charity who will help me with appealing against it so hopefully I will get there in end but I know it’s going to be long drawn out situation but it will get back dated to when first applied for it which will probably be lot money owed by then but madness of situation is having to cope on hardly any money in mean time with resent situation with rising cost of living is not good but trying not to get stressed with this as I know it’s not good for me to do so but most of all I have been so disappointed and let down by my GP and my doctor surgery hope things are improving for you and your coping well on raid stroke recovery take care stay safe Kaz61

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@Kaz61 my experience of my GP is much better than yours by the sounds of it. I have had to contact them if i want anything though. I dont suppose i’d have heard from them otherwise. When i have spoken with my GP though she has dealt with my requests promptly. Getting past the receptionists was the hardest bit.
I can’t believe you’re still waiting physio this far on. We had our strokes a similar time & i’ve had physio all along albeit at bigger intervals now.
In relation to being signed off work indefinitely i don’t think they are allowed to do this. I think 3 months is the max they are allowed to give with 6 months as a rare exception.
Really hope you get the support you need soon.
Best wishes.
Ann

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Hi @Kaz61, I’m so sorry to hear all the distress you’re going through! Sounds horrendous. I can relate to a lot of it. It does seem that treatment for Strokes and follow up varies re where you live.

Where I live support is virtually non existent. This Website kept me going when I had my first Stroke last year, especially all the lovely people on the Forum. That’s shocking that you haven’t had a Plan put in place yet … mind you, neither have I!

Could you change your GP.? Or complain to the Practice Manager in writing. Or get in touch with your local Healthwatch. Maybe PALS through your local Hospital could help. Another idea, which in the long run would be potentially beneficial is to apply to your local Council (Adult Social Services) for ‘An Assessment of your needs’ by a Social Worker. Failing all that you could try your local MP. There’s also an organisation called SEAP, that can help you process complaints/be an Advocate for you. There might also be other Advocates that can help in your area. Sorry, hope I’m not overloading you.

Do you have anyone that can support you re applying to PIP? I’ve found the Citizens Advice Bureau excellent, also you could try Age UK. And of course there’s the brilliant Stroke Helpline on this Website. They are very resourceful and can guide you re Benefits. It sounds like you should be in the non working group of ESA for sure, with severe disablement premium. When you fill the PIP forms in you have to literally put EVERY small detail in about how you’re affected, all your consultants names etc. You can request to be seen at Home (doublecheck tho due to COVID restrictions), so you don’t have to go thru the trauma of a random cold office somewhere. And definitely have someone with you to witness what was said. If you Google PIP assessments (if you’re up to it) there are Forums where people share their experiences, how to prepare, what questions (generally) are asked.

I really feel for you, as I fought for years in related areas, and I really hope that some of what I’ve written has helped you/will help you.

Sending positive thoughts to you :sparkles::sparkles:

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Yes the main help igot was from the stroke team for six months my GP have been good with the rest of my health but stroke wise apartfrom meds not a lot
As for pip and ESA do a MR review and states why you think there have in you view made a mistake do not say wrong that sets them up against you. Use all the medical and friends and work fit notes documents to build up u case remember it’s ot u illness that is being judged but how you handle the tasks that there use to score your assessment with kind regards des

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Hello @Kaz61. Stick with it. PIP is set up to reject applicants. I have just had my tribunal and had the judgement overturned and am waiting for a back dated payment for almost a year from when I applied. It is normal to feel you are asking for too much when the rejections sound so reasonable and your confidence in yourself is at its lowest. In my case I had to provide evidence that totally contradicted statements made in both the initial interview and the MR. Good luck, Julia x

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Hi Des_Murphy thank you in your reply yes I agree you right is my medical needs and am making case I think when I first applied for pip and filled form out I thought should not be hard and I felt I started my case correctly but speaking to local charity here locally who are benefit advisors stated to me that it’s widely known that nearly everyone gets refused first time when applying for pip and even when you ask for reconsideration for pip then usually turn you down and then the benefit advisors can get involved for you which they said they will for me and since this is for me happened and I am waiting for reply to my reconsideration and put together as much medical evidence to help mush as I can and when I get answer from benefits office on this if they still come back and decline me I know I can appeal with having the benefit advisors behind me to help it will be long process I know but hopefully in end I will get there but in mean time I will solder on but thank you for kind advice hope all is good with you and you recovering well after your stroke Jaz61

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Sending you lots of prayers and May God grant you with lots of strength. Ameen

When i first met with my GP after stroke, she said i am sorry and i am in shocked to hear about it.
After that i started asking my questions and she simply said to me sorry i have no experience to treat the person of stroke as young as you are. i was 40 years old. Which left me scared and very confused,
GP advised me whatever questions and concerns I have I should ask with my consultant on the follow-up appointments.
She did nothing at all. Stroke team discharge me as well.

You are absolutely right about using a local benefit experts charity. As my colleague informed me about them. if i haven’t done that i don’t know how i would have survived. Lady who helped was an angel. She filled my forms for the DWP and send them and also took me for the interview as well…
Please take your case to them. They will guide you and you would receive the help. Yes, things have gone worse since covid. they have got far too many cases to handle.

Have you thought about getting a medical retirement from work? i know nothing about it but when i raised the question about leaving work someone advise me here.
I can’t understand how you are managing.

How is your employer? Can’t he help you with your situation? Can’t you do some work from home? Part-time job? But by reading your message i can clearly see you have got no strength to do so.

i don’t know what else to say… i am just lost to understand how you are handling.

Open the window and stand next to it for a while. Wind will make your mind and thoughts clear.

please keep us in the loop…All the very best xx

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Hi Nadya I work for 38 years as healthcare assistant at my local hospital I work on bank throughout that time so when I was struggling towards end over last three four years I took what was supposed to be semi retirement as I was sixty and got small NHS pension I was going to take six to 12 months out of work and then go back in part time only one or two nights per week but after taking my retirement last July I had my stroke on Boxing Day last year six months after taking my retirement so go back to work as not become something I can do even trying to do something from home is not really possible as since had my stroke my concentration levels are not good I use love to read go through books like hot cakes but since I had my stroke I can only read about chapter or two at most and have to put book down as makes my eyes tired so work is no go for me and yes I will keep badging on with my claims for right level of benefits for myself and yes it’s really good to know that I have backing of local charity benefit advisor for support with this thank for kind response and words sorry to hear at you’re young age having a stroke must be big shock for you at your age I hope you are on road to recovery from the stroke take care stay safe and once again thank you for kind words kaz61

Hi JuliaH thank you yes I will stick to it it’s nice to know I have backing of the local charity benefit advisor to back me up when it come to appeal but it’s maddening that what you have to through to get what should rightly be paid work all my life as healthcare assistant at my loo hospital looking after all patients caring for all of them never claim for anything in my life and when you need the support and understanding from someone else you feel totally letdown throwing on rubbish heap as you know use to anyone anymore just number in long list and having to go through all these hoops to try get right level of help assistance finically thank you for kind response hope you are recovering well from you stroke take care stay safe kaz61

Hi i feel for you i had a couple of strokes jan this year i have just for the first time been seen by my doctor since then cronic pain weakness job to walk much blah blah gave me a steroid injection in my shoulder so i can move my arm a bit never even looked at my notes its a bit of a joke to be honest as for claiming well thats work in a very very slow progress will keep you upated on the progress keep your chin up

I feel you pain and frustration my hubby had a stroke Christmas eve 2020 and i feel the gp let him down
As for physo that a joke not seen them they last visit was November last year the district nurse her last visit was easter best thing is at one point we had him walking ok took 3 people to help him we were all excited that there some slow progress but that was may last year lack of help lack of care from the physio he back to being bed bound
He went for build up shoes to be fitted again this was last year he was promised physio but got nowt and the cheeky cows phone up this week to ask how he was doing woth his walking what a bloody joke
Unfortunately people with strokes,heart attack ect have been neglected and they should be ashamed of themselves pure neglected

Hi Teresa and Rockley thank you kind words but appears to me you have been through so much yourself s sorry to hear of all your problems and been let down so badly by everyone like myself it’s so frustrating when this happens it’s enough to have deal with every day just trying to manage every day activities that we all normally would take for granted and so you hope that you would get support you need from GP and surgery but when you don’t it only goes to make everything more frustrating and stressful which when recovering from a stroke you don’t need as for claiming for right financial support that is even bigger minefield to walk into especially if you never been in that situation before which I guess is the case for most of us within this stroke forum and many other stroke victims but I can only hope pray that things get better for you and your husband and receive all support you need both for his physical needs and for you both financially once again thank you for you kind words take care Kaz61xx