Hi Jim @ManjiB,
Thanks for the tip- I did not know that such a simple error could lead to a breakdown of the system !Another reason why I hate technology !
Regards,
Bob Isle.
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Referring to the practical difficulties you are having managing day-to-day, if you haven’t already done so, it might be worth contacting your local Adult Social Care / Adult Social Services Department and asking for an assessment of the support you need. If you are found to be eligible for assistance, you would be allocated funding and could work out how best to use this to meet the needs you have. Involving social services could help in getting other agencies, such as your GP, to recognise the assistance you need. As I say, you may have already tried this, but, if so, from what you say, it might be worth trying again. Take care. David Hearnden.
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Thank you my GP won’t even come out to me and will not help me to get basic carer or agree to signing any forms for me to get benefits she has gatekeeped all the way and I have complained and nothing. I feel done to be honest , no life at all just a veg with no diagnosis or recognition of my state from GP at all. I’m worn out trying and wish I could just fall asleep for good. It’s clear I’m fighting a losing battle and a system that has just left me for dead. It’s like they want me to just go away and hope I drop dead. Yes I’m angry very angry because they ignored at critical time.
I’m sorry to kick off I’ve just had enough of all this. No life at all a veg courtesy of incompetent NHS.
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There are disability advocacy services that might be worth getting in touch with, they can help you communicate your needs. You can contact Disability Rights UK or the NHS has a disability advocacy page with a list of charities and support services that may help. Your local council may also have one too, this can also be found on the NHS page. These services may be able to advocate between you and your GP. It is worthwhile having someone to back your corner, I had an excellent support worker from a charity who visited me once a week for about a year and she was able to liaison between organisations and myself, making me less vulnerable to being railroaded or obfuscated.
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Chronic hip conditions do not directly affect the inside of the bladder to cause frequent urination. However, they can change how you move or cause severe pain. This leads to tight pelvic floor muscles or nerve irritation, which creates a sudden and frequent need to pee.
Have you ever had even an xray on your hips?
Have you had any blood tests at all?
Have you been tested for diabetes?
I agree that you really should change your gp, but in the meantime, when you are in your worst pain, call the ambulance and get taken to A&E and let them start investigating. At least you will been see with fresh eyes and without any bias. And be prepared for a long wait there, your patience will be worth it 
Don’t refer to your hip pain as being the result of your stroke. In other words, don’t give anyone a reason to write it as a stroke effect. Just leave it to the doctors to figure out what it is.
That is the top of your priority list. Once you can get the pain under control, you’ll be in a better frame of mind to deal with the rest. You might even get better night’s sleep
Your gp is clearly being negligent to leave you in such pain. And that level of pain is extremely debilitating and results in self neglect thus you up on a downward spiral.
Lorraine
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I agree with @EmeraldEyes, sometimes it is worth addressing a situation as an emergency if it is so debilitating, it is leaving you unable to function properly. Fresh eyes, fresh tests, and fresh scans can lead to new leads.
As you suspect you might have had a stroke seven years ago but there is no official diagnosis of one, I would put aside that to focus on the most prevalent symptoms of your condition. If you were addressing stroke symptoms, the routine would be different and, unfortunately, there is not a lot a GP can do and it is up to the survivor to best rehabilitate themselves. Acquired conditions, be they related or unrelated need addressing independently for your peace of mind and wellbeing.
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Hi @Julieann
Welcome to the community and I’m sorry to hear about everything you’re going through. It sounds like you’ve got so much going on.
I can see you’ve been given lots of great support from our community and I would echo what has already been said. You are entitled to a second opinion so that would be something to seek out and I would also echo getting someone to advocate for you, maybe one of your sons or you can search online for charities that offer that service.
As others have said, with so much going on, it’s important to focus on thing at a time. Write a list of the things you’re struggling with and put them in order so you can see and speak with a GP about that one first. Hopefully seeing a different GP will help.
I hope you get some answers and help soon. If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Anna
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This sounds great Rupert. Are you able to share with us the organisation that offered you this support (don’t worry if not, for whatever reason).
Also, the Stroke Association does provide excellent support - I know because we received it and it was a game changer!
;pray:
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Sure, but it would be irrelevant here, it is called The Wallich and it helps with people who have become homeless, so if ever anyone does, and lives in Wales, I would recommend them.
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Hi Jim @ManjiB
Many thanks for your guidance and words of wisdom; my memory is so poor post-stroke, that I may well not remember but we’ll see how it goes!
Regards,
Bob Isle.
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Hello @Julieann julie I’m so sorry and sad to read your post,but while an MRI clearly diagnosed my haemorrhagic stroke,I can relate to being ignored,at the rehab hospital (RHN I was in before I came to this dreadful nursing home. I was confined to a bed/wheelchair causing irreversible contractures to my legs,making it difficult for me to walk again,but I’ve nagged and pleaded and finally a private physio has got me walking. Same with eating,I wasn’t allowed to eat for 5 years because medical healthcare professionals were afraid I’d aspirate.but not eating and walking takes away our humanity.i have my fingers and toes crossed that a healthcare professional listens to you.on the bright side this makes you a fighter advocating for your needs,don’t stop. keep on keeping on.
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