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NHS support - feeling frustrated!!

Hi All,

My partner was diagnosed with relapse remitting MS over 9yrs ago and have experienced plenty lows & highs you’d expect with the condition. Over the past 18 months she has been fairly lucky that although she has had minor flare ups of symptoms she has probably has been relapse free.

Since just before Xmas her symptoms have worsened but being the stubborn person she is she tends to battle through and resist the need to visit her GP. With new symptoms developing & existing symptoms worsening she finally admitted defeat and visited the docs two weeks ago…since then we been pulled from pillar to post as GPs convinced she is experiencing her worst relapse in a long while but until last night unwilling to do much about it other than trying to get her into the 1 day a week specialist clinic! Admittedly she was showing signs of a urine infection & subsequently clinic didn’t want to see her until finished course of antibiotics!

She has just gone through a weekend of hell, in so much pain she can hardly move at times. Emergency appt with different GP last night & they are even more convinced she is suffering relapse and even talked of getting her admitted to local hospital so she could be seen by neurologist asap/start steroid treatment. Instead she opted for a home visit from medical team last night to relieve the biggest problem she’s having with this relapse as her bladder is no longer emptying. The GP sent urgent note last night though asking for my wife to be seen asap in clinic which just so happens to be today as they believe she really needs to be started on course of steroids to hopefully combat the relapse.

So this morning the wife rang the clinic hoping they’d be able to squeeze her in today seeing as its only a 1 day a week clinic but unsurprisingly they are unlikely to be able to see her until next week at the earliest. Now again we are left in limbo!!

I feel powerless & hate to see my wife suffer, she’s already been messed about for 2/3 weeks by various health experts whom some seem afraid to admit she’s going through a bad relapse, no one will make a decision & actually try and start treating the problem yet we again have to stand by and watch her getting worse whilst waiting to get into clinic.

Apologies for long post but I’m getting so frustrated with the health service…years ago when she was first diagnosed the local MS specialist service was great but cut backs/retirements over time mean we feel like there is little support. GPs whilst confident of what she’s going through & doing the necessary checks/tests but ultimately won’t prescribe a course of action without her being seen in clinic which on 1 day a week is almost impossible!!

I don’t know what we can do…where we can go…can we put pressure on the system or do we simply have to wait whilst there is every likelihood the relapse is doing more damage??

Thanks for listening!

I am sorry that you are both having such a frustrating and horrible time. You local referral system is different from mine, so I don’t know what to suggest beyond the obvious things that I am sure you are busy on already: securing a definite appointment for next week’s specialist clinic; ensuring that underlying urine infections have been dealt with (on-going infection is likely to delay steroid treatment); talking to the GP about what can be done in terms of easing your wife’s pain and managing her wayward bladder in the immediate term - medication, arranging district nurse visits or whatever. The GP is your friend here, knows the system and remains the person most likely to help - even if he/she is sometimes a bit slow off the mark.

The kind of problems you are having can happen, I think, when someone is jogging along OK and not really on the radar as far as the hospital specialists are concerned; when that person suddenly does need help, things can be a bit of a chaotic fumble. It must be horrible for you, struggling to get access to the help she needs. I really feel for you both.

Alison

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I may well be wrong but I thought GP’s could prescribe a course of steroids? Could your GP liase with the clinic and just go ahead?

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Had a similar problem back last April. I spoke to MS nurse, who then spoke to GP who then prescribed the steroids for 5 days.

hope this helps and that you can get things sorted for your wife ASAP.