Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Dixie101 02/12/2013

Unbelievable. Finally got my first nephrology appointment for 18th February. Received a letter today giving me an appointment in mid April. Apparently Monday's appointment has been cancelled. No reason. This will make it 4 months from the date of my CT scan until i see someone who can tell me what's going on. The NHS seems to be collapsing! Does anyone, please, know of a private nephrologist I can see? Will travel anywhere.
Thanks in advance

Chewitt 02/14/2013

Hi Dixie,

I can feel your frustration from here!

I saw a guy in Oxford who I beleive is still there, though he's quite old now. I had a look online and saw a couple who might be possibles. I know you've tried various Spire hospitals, so I avoided those.

1. Dr Alex Crowe at The Grosvenor Nuffield Hospital in Chester

2. Dr Simon Ball at The Priory, Birmingham tel. 0121 446 1636 for appointments.

I know the second is quite a distance from you, but he gives a phone number!

If ese are not suitable, have you tried an online search for private renal consultants? They do seem to be out there. I hope you have some luck with this.

Chewitt

Chewitt 02/14/2013

Just to add to that.

If you go online to BMI Healthcare, click on find a consultant, type in the specilaity and your postcode, it comes up with a list of nephrologists and most have phone numbers and times of clinics that they run.

Chewitt

Dixie101 02/14/2013

Hey Chewitt, how are you? I have booked an appointment with Dr Crowe for the 27th. The Nuffield sounded very efficient. I do, however, have to get a referral letter out of my GP:( Here we go again!! Frustration isn't the word! Not only did the hospital cancel my original appointment and not bother telling me, the number on the letter just rings out. I've tried it three times a day for two days and THERE IS NO-ONE THERE.
Shows a lot of concern for patients doesn't it?

Chewitt 02/15/2013

Good news Dixie. I hope you don't have too much trouble extracting the referral letter from your GP. My mum is having problems with a referral to a consultant (NHS). She saw an Opthamologist who promised to refer her on, but several weeks later she's heard nothing. Her GP's secretary has chased it and it seems no referral has yet been made. I've warned her not to expect speed from the NHS and not to be surprised if things just don't happen. I'm just glad I'm not in Stafford.

I've used Nuffield hospitals in the past and always been happy with the service provided. Hopefully you will be, too.

Chewitt

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