Difficult situation , to say the least !!

[Fatbloke-Dim]

My missus is 3x haemo per week . She is currently in hospital , again, with severe spinal issues , which have prevented her from attending the appointments. I may need to get her seen privately by a spinal specialist, but that would likely take her away from the dialysis facilities she has at the mo'. She's in Manchester Royal , in the kidney unit, but only because her mobility is gone , as the dialysis room is right there a short bed-push away. I could not get her into her wheelchair, even , let alone into the ambulance to get her to her dialysis clinic. What I'd like to know, is.....if she gets into a private facility for the spinal thing ,and it would need to be one with available dialysis facilities ,as she could'nt be moved other than wheeled on her bed ,would the N.H.S. pick up the tab for the dialysis? I don't even know if I can afford the spinal treatment , but the health service has failed her mightily with it , so I'm prepared to invest my laughably small savings in her spine to try and give her some quality of life where she currently has none , she's about ready to chuck it all in and and just let the renal failure take her ,absolutely beaten ,she is . Any advice on this?
Cheers one and all.....merry Xmas ,and keep yer spirits up!

[Daisy4246]

You will need to speak to the doctors and unit staff about this and l find you need to be persistent to get answers. As far as l know the NHS should cover the dialysis costs.

I really wish her well and hope things improve. She is lucky to have you and it must be hard for you to face what she is feeling. At sometime or other many of us feel like that. Keep fighting you will get there.

[wagolynn]

Hi Fatbloke-Dim,
I can understand your dilemma.

My thoughts, for what they are worth, are -

Spinal issues - If the consultant doe's not know your wife is in hospital, the missed appointment will be treated as any other missed appointment, the patient will move down the list for another appointment. The NHS has a lot of problems due to missed appointments.

I would contact the consultant's secretary, and advise them as to where your wife is, the consultant may see her there, and tell them why the appointment was missed.

Before the hospital discharges your wife, they will look into how you, and she will be able to cope at home.

I very much doubt that a private consultation will result in better treatment for the condition, though some things may get done quicker.

Your question about paying for dialysis - contact the hospital PALS office, tell them the whole story, I am sure they can organise some help, the hospital transport should be able to get your wife into a wheelchair for you. Also they will get an official answer on dialysis costs should you go elsewhere.

Best wishes to you and your wife.

[Fatbloke-Dim]

Thanx all .for the good wishes and advice-'tis appreciated. Our lass has not misssed any appointments,as such , just the dialysis sessions, but the clinic have always been notified as we both feel VERY strongly about folks who waste N.H.S. time and money by just "ducking" on appointments. She currently has no spinal consultant or any other spinal input at present. The renal team at the Royal are top-notch , and get things done in that regard , but the spinal issue is very much a size 10 elephant in the room . There is a reluctance to even hear of the spinal caper . Hence my thoughts on going private. At present she can't even get off the bed, lie down ,use a commode ,sleep properly or any of the other myriad things we take for granted with normal mobility. But the complicating factor is the HDX . If it was just the spine thing, then mobility logistics aside it might've been easier , but with the dialysis , it becomes much more of an involved juggling act. I will be casting around for a facility with the requisite spinal and dialysis facilities, and also see the folks at PALS , tho' previous experience with them when my missus has been attacked by violent patiennts has been , not to put too fine a point on it ,somewhat lacking in commitment.

Anyhoo , it's early days yet , so much remains to be learned . Having regard to the hospital checking to see how she'd cope at home , as long as I said a bed would be placed downstairs, all boxes were ticked as far as they were concerned. The short answer is she can't cope at home like this. Also , much fiddling of paperwork in regard to her performance at physio has been in evidence , stating she has smashed the stair-climbing ,does the bathing , dressing and domestic "pottering" things satisfactorily. In truth , she can't hack any of these . Maybe with just the vascultis effects, but with the spinal issues? No chance. Just wish someone would listen to her pain and mobility concerns. Maybe Salford Royal might've been a better place to be as I think they "do" spines there to some extent, but the dialysis clinic is attached to M.R.I. and they were quite insistent she ended up there for the renal expertise ,which is fair enough . Does anyone know if Salford have dialysis facilities ? Anyroadup , the quest continues , so ,hopefully, watch this space, as they say ,and thankyou all again for the input.
Nige H.

[wagolynn]

Have you thought about talking to your/her GP?

How do you know it is a spinal issue not muscular, and has anyone queried or asked for an explanation of the physiotherapy results?

[Fatbloke-Dim]

Nobody has queried the physio results, but 6 years ago , degenerative disc disease , various flavours of stenosis , compression of the thecal sac surrounding the spinal cord and arthritis were noted from M.R.I. scans . Also , to put the icing on the cake, there is muscular stuff going on , most notably when the disc and stenosis rears it's head , the paraspinal muscles go into severe spasm , causing pain beyond belief. That's what is happening now, on even the slightest movement , mostly in the area of L1 vertebra, which currently has a plate fracture , due , it is thought , to bone embrittlement from the 60mg dose of Prednisolone she waas on for 3 months for treating the inflammation due to vasculitis .These are currently reduced to 15mg , but looking to bring the dosage down some more presently.

The renal situation is under control , as far as is possible , but the spinal issues are not being addressed . If you have a quick Google at some spinal forums , or have a trawl for paraspinal spasms, you'll see it is pain turned up to 11 ,but the thing is , most folks , or non-medical persons have no clue to the severity of it . If anyone is lucky enough to never have encountered this pain , then it's entirely reasonable to not appreciate it's nature , but it would help if the doctors took it a bit more seriously. At present , things are just like a revolving-door ride to the renal ward , back home ,can't mobilise to get to dialysis ,999, and round we go again. Tying up a renal bed for folks who need it badly , as my wife did , waiting 2 months with 4 percent kidney function until a bed was released.
She has become aware in thne last few days that more pain , and quite possibly, damage , is occurring in the L1 area, as a result of how she has to try and prop herself in as best a position she can , regarding pain ,by using her arms and VERY limited upper body movent to try to achieve this. Anyway ,it has been put to the medical staff , that a move to Salford may be of some benefit ,for their spinal expertise ,I have been told there is dialysis available there ,so , hopefully might be an idea. We'll see.
Thanks again for all the input, must dash now to see what's gone off overnight , there's bound to have been something . There always is.....

Merry Xmas to all , stay safe, happy, and above all HEALTHY !

[wagolynn]

Merry Xmas to you and your wife, Best wishes.