Stage 4 Kidney Failure

[Victoriawould24]

A close family member I have care responsibilities for is late 70’s and has type 2 diabetes, she was told last week she has stage 4 CKD and that it has declined rapidly which the doctor said is a concern.

She was referred to the renal unit and yesterday I rang the hospital to ask how long we can expect to wait to be seen and was told she has a telephone appointment next April and then they will decide on treatment !

I am concerned about the lack of treatment between now and then and wondering if this is a normal timeframe or should we push to be seen urgently.

She is also registered blind and sometimes struggles to understand things so a telephone appointment is also not ideal for her (her GP appointment was telephone and she couldn’t do hands free as no mobile).

She is not especially overweight and is as active as possible but she struggles to manage and understand her diabetes (with the vision impairment an added challenge to that) , she has been getting symptoms such as itching and exhaustion and has also started to be confused by things ( more than her usual).
I am not sure if I’m worried over nothing and this is just another old age thing but what I have read so far doesn’t imply that.

Any advice on getting medical assistance sooner would be welcome. Thanks

april! That’s awful! Can you ring out patient and ask if they have a cancellation? Can they ring you if they do? https://www.spirehealthcare.com/how-to-book/nhs-patients/#:~:text=Patients%20in%20England%20can%20choose,Healthcare%20for%20your%20NHS%20treatment? Suggest that you can have NHS care in a private hospital can you look into that or could she pay for one appointment privately?

Ring GP Again and asked them to write another letter to expedient the process?

Thanks for replying, I was shocked but I didn’t know if I was being alarmist about the condition and urgency.
I will get in touch with the GP, the issue is that relative is in denial and convinced ‘they will probably just say it’s old age’ so when she hears about the appointment not till April (I haven’t mentioned it yet) this will just re-enforce her theory and she will think I’m meddling/ being OTT 🤦🏻‍♀️

Whatever about issues that are not life threatening but bothersome being months and years away, I am surprised and a bit shocked that a serious issue like this is only being followed up nearly a year from now. Stage 5 CKD is kidney failure, as you probably know already and your relative is already in Stage 4.

I think you will have to push and push and get GP to follow up on your behalf. Kidney failure can be managed but with your relative's other unfortunate issues I really find it unacceptable that s/he has to wait so long. Shocked is right. What would be at the back of my mind is the potential need for dialysis at some point, but that's not a given. Still....

Wishing you well, and push hard.

@wuminzo Thankyou for taking the time to comment, I am reassured a little that it wasn’t just me that found this alarming.
I actually said to the woman on the phone ‘are you joking’ and she said well some people are being booked into 2027 as if I should be grateful.
I absolutely will push - it’s so exhausting having to challenge everything isn’t it.

Dialysis was raised by both the diabetic nurse and doctor so it was clear that’s the only option really.

Try the Patient's Association. You have a right to choose where you get care:
https://www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/

Speeding up waiting times:
blog.stopwaiting.co.uk/how-to-speed-up-nhs-waiting-list/

@MiloMinderbinder925 thanks this is very helpful

What drugs is she on? I was told I had stage 3 but it was a blip.in.the blood results caused by one of my drugs and all is now well.
April is NOT ON!!!

@Mischance Thanks for replying, I think it’s probably likely to be true sadly as she does have some symptoms. She takes lots of medication I sort each week I’d recognise the names if you told me but can’t think off the top of my head.