I can’t believe you have to buy your own catheters!
If you’re having to do intermittent self catheterisation due to bladder retention, you should be able to get your supplies from the NHS. They come via a 3rd party delivery service (eg Charter, Scripteasy, Nightingale, among many others).
If you ask your GP to refer you to the local bowel and bladder service, they should be able to refer you to a delivery company.
I get all my supplies from Charter (previously used Scripteasy). I think they are brilliant, I use their website to order what I need - and the list is very long when it includes stoma supplies - they then request a prescription from my GP. My GP practice are generally pretty quick at sending this so within a few days, I get an email from a delivery company telling me when my order will arrive.
If I had to pay for all my gear, I’d be spending all my PIP (both components) on it!
Hi Sue, many thanks for this information. I got my initial supply from the NHS, but they then never supplied any more so I’ve been buying them myself since 2008. I told my GP about it but they never offered any further supply.
I’ve also bought Vit D and Vit B12 as I’m always low on them. It has cost me a fortune over the years. I have a telephone appointment with my GP tomorrow as I’ve suffered in silence during the Pandemic as I didn’t want to add to their workload. Now I feel so ill I have no choice but to contact them. I wish I had more support but I don’t and have been paying out of my pension and PIP money for these, plus other things I need (such a Hyperbaric Oxygen).
It wasn’t so bad when I was working but I’m a pensioner now and my saving have gone on just trying to survive my MS life needs. It’s time I sought more help now though.
Once again many thanks for the information as it will definitely help me. Mx
Hi, just got a new wheelchair from the NHS and don’t seem to have as much trouble as everyone. I got an ergonomic Kuschall Compact. They sell for about £1800 but I didn’t have to contribute anything towards it. Don’t know how it works where you are but I just called them here and made my appointment. I already had a wheelchair from them and they just picked it up when they dropped the new one off.
No problem. Bizarre that we are just left to muddle through our various health problems. At least we are able to help each other (best thing about this forum!!)
You can’t get vitamin D on the NHS. NICE have declared that GPs are not to prescribe it. Nor vitamin B12 tablets (although if you are deficient people often have injections of B12 on the NHS).
But anything needed for catheterisation is free on the NHS. I believe the NHS can provide continence pads. But, they are huge. So not necessarily something anyone would want!!
I know people have said before that you are able to self refer to bowel and bladder services. I don’t know how you go about that, so definitely ask your GP to refer you.
It could be that they only offer MS nurse services on paper, or rather on webpages, to look good or reassuring, when in reality they don’t.
I hope at least you start to get your catheters free on the NHS, so you are no longer 100% abandoned, but move up to join those in the 99% abandoned band!
As flowerpot said, neurological services seem to be one of the cinderella services. Back in the ‘good’ old days, before DMTs, they preferred to not even diagnose MS, well, tell the patient that they had MS, even if they wrote it in their private hospital notes. “Can’t possibly have the patient knowing what is wrong with them, especially when we have nothing to offer and have no cure” attitude!
I must admit I’d struggle to be a neurologist - most doctors like to feel they have a chance of curing some of their patients, or at least making some of them a bit better. It must be difficult to be so often telling patients bad news with their diagnosis and then having nothing much to offer. Their job must feel quite futile at times. No wonder many seem to be a bit weird, and lacking in humanity.
I actually have a copy of a hospital discharge letter, sent to my GP (obviously not to me in those days) which gives all my test results - several CNS lesions, unmatched O bands on LP and evidence from VEP - that I clearly had a demyelinating condition; but ‘we won’t mention MS unless she does’. Which I wouldn’t because I’d been told ‘you don’t have MS’.
Given that I didn’t even know that’s what I was being tested for, I was a tad surprised to be told I didn’t have MS. ‘Of course I don’t!!’ (Said I!)
Then again in 1997, there were no DMDs, the only treatment was steroids for relapses (which I was given). When I first saw this discharge letter, at about the time 5 years later upon actual diagnosis, I was angry that I’d not been told. In retrospect though, I did a lot of things in that 5 years that I maybe wouldn’t have done given the earlier diagnosis. So that sneaky, ‘let’s not tell the patient’ strategy worked in my favour.
Hi Sue it’s great to get this information. I used to self inject Vit B12 so hopefully the GP will restart that prescription. Shame about the Vit D though as the research says it helps MS but oh well good old NICE.
I have another problem also that you might be able to help me with (sorry about this but I’m getting my list ready for the GP appointment tomorrow). Do you know what medication they use for arm and leg stiffness as today I couldn’t even lift up my cup of tea up because of the stiffness (and that it disastrous for me as an avid tea drinker). I was on a medication years ago for this but for the life in me I can’t remember its name.
Any further help you can offer would be so appreciated.
wow i know you can get cathetar and stuff free even pads, as when i had an issue i was told that by the urologist incontence team.
IF you have a need and are low on Vitimin D and B12 you should be supplied by NHS. I was. I was givin the Vit D by my GP. then i had another test and it was normal again, i get my vitimin D calci chew every day free. the vit D is standard strength. I am ok now as i get it naturally by sitting outside. HOWEVER, if you take it just for yourself yes you have to pay for it.
Hi Crazy_Chick
Good to know about the Vit D I’ve got a GP telephone appointment this afternoon and have got a long list of ailments . I’ve been saving them all up as I didn’t want to bother the GP because of their workload during Covid but I feel so bad at the moment that I’ve no choice. I was really wanting a blood test to check my Vitamin levels but got a telephone appointment offered instead. I’ve always been very low on B12 and D so I’m hoping if I get these levels up it will ease some of the symptoms.
I have so say I think you are a whiz on the computer how do you get your pictures to show on this site - they are great.
Mx
she is a very calm jack russel. been with me since 2007. so she has been with me through many battles in my life and grief. she was there when i lost my mum, then my husband. Loosing my home, and moving she has always been there. I feel sorry for her sometimes as now i struggle to even let her out in the mornings. She never barks at people is very calm.
she is asleep at the moment. at 4 i will use my wheelchair and take her out up to the food rubbish bins so she can have a good walk, yes they are stituated quite a way from my front door lol and the corridor slopes upwards.
Mx
. I’ve been saving them all up as I didn’t want to bother the GP because of their workload during Covid but I feel so bad at the moment that I’ve no choice. I was really wanting a blood test to check my Vitamin levels but got a telephone appointment offered instead. I’ve always been very low on B12 and D so I’m hoping if I get these levels up it will ease some of the symptoms.
