DAFB, things are getting worse in the UK


#1

The UK gov here has been niggling away at renal (and just about everything else) for the past 10 years, reducing funding by a third , changing staff banding without consultation.

I’ve had trouble getting dialysis near my GF for the past years, we’ve finally moved in together, so I’m in the ‘catchment area’ to receive treatment and home heamo now.

I’m missing my mothers 80th birthday, quite deservedly my parents moved out of the big family house after I left to spend time in a more suitable property. However its now 4 hours away, and while I can travel down fairly easily, there’s no dialysis slots nearby until next year. So yep, I’m gonna miss mum’s 80th.

I’d love to see dialysis units added into housing developments (this actually happened in another London location I was looking at moving to)
This would surely ease up the strain of spaces, and allow for more freedom.

Unfortunately NXstage isn’t a solution, as I’ve no way of transporting it (I’ve YET to find an NXstager thats travelled by British railways to reach their destination. And I don’t have the support plan in place to do more frequent treatments, nor would I think my fistula cope with daily needling.

So here’s a shout out to a ll the UK patients. Don’t let the bastards grind you down!


#2

I’m so sorry to hear this, JW77, and you are not the only person in the UK who is telling me that the dialysis situation is not what we would hope. Travel, in particular, has been identified as a problem, because there is just not any excess capacity for clinics to take on travelers. Here’s hoping this gets better soon!


#3

Some people using NxStage equipment don’t do daily dialysis, but do longer treatments 3-4 times/week. Would that be an option for you and your girlfriend? Do you have access to a car to be able to drive to celebrate your mother’s birthday with her? Have you called NxStage UK to talk with them about options for traveling with the NxStage System One? I found their contact info on the NxStage Medical UK site:

Contact NxStage Medical UK
For further information about our products and services please contact:
NxStage Medical UK, Ltd.
St. Mary’s Court, The Broadway
Amersham, Buckinghamshire, HP7 0UT
United Kingdom
Tel: 01494 590405

There’s a contact form here - http://www.nxstage.co.uk/contact.


#4

See the OP. No car and limited support. Partner has MS, so the times we choose for treatment have to suit us both, as she acts as primary carer.


#5

I don’t know how the UK dialysis system works. In the U.S. there are social workers in every dialysis clinic who assess patients and learn about their needs and then try to find resources to help them. Do you have a social worker at your clinic who can help you find the resources you need? There are times when it is very frustrating to both patients and staff when there isn’t help for some problems. I’m sorry that you’re going to miss your mother’s birthday. Could you schedule a time at a dialysis clinic near her for early in 2018 and make plans to have a second birthday celebration then? I’m sure she would be happy to see you and it could be nice for her to have something to look forward to while making her birthday celebration last even longer.


#6

Beth, yes we will be booking slots next year.

Dialysis units (come under hospital ‘NHS trusts’ in the UK.

Dialysis units should have a renal specific social worker available to patients in the UK, however many trusts are deeming them as non essential, and referring patients to voluntary support groups. Some units DO have a dedicated social worker, counsellor etc etc.

Its very much the cat and mouse game between central and local government (I’m sure there are simalarities in the USA)

Thanks for your reply.

J