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It's an absolute disgrace - I told them

Hi everyone,

I’ve discovered today that the urgent referral that my GP did almost three weeks ago has been dismissed by the consultant and I’m now on a six month waiting list to be seen.

I have had neuroligical issues for about 5 years now but over the past 12 months, they are becoming more frequent and more debilitating. I also have tinnitus, balance problems and now occasional swallowing difficulties.

My GP referred me as a routine at the beginning of Aug but just a week later, when my symptoms had become more severe and were affecting my daily living - he re-referred me as an urgent case.

Because I hadn’t heard from the hospital and today whilst out with the family, I almost collapsed, I rang the booking office at the hospital only to be told that the consultant has refused to accept the second referral.

My GP rang this afternoon after I informed the receptionist of my phone call and he is now trying to talk to the consultant and also get me a scan without a consultants referral. He also said that he had referred me to General Medicine as the Neuro waiting list was much longer.

I feel so frustrated and upset - I know there is something wrong - it’s as though my body has just given up and refuses to do what I ask of it.

I am a staff nurse and see on a daily basis how this system is failing 100s of people - it’s a disgrace.

Sorry for the rant, I’m normally so positive but if I’m honest - I’m gutted

Alison

totally understand where you are coming from- I last saw a neuro around 2 yrs ago, no definate results from mri or lumbar punctures doen at taht time. It seems then I was forgotten about- I have been managing with my symptoms and hate to make a fuss. hoever things got worse a few months ago- earlier this year and i was reffered from gp. Then again 2 mths after taht as a 2nd more urgent referral when things getting progressively worse. I have now an apt but not till end of october.

Got and apt on monday at eye hospital due to urgent referral from optom for optic neuritis.

I only got the neuro apt sorted after ringing botht he secretary and the booking centre directly.

Sorry- seems I have not helped you at all, just ranted about my own situation! mad isn’t it, we are all after the same things, but the waiting is horrendous! thinking of you

What you have experience is far from unusual with some Neurologists.’ Whether it’s their workload being too much or the poor luvs worrying about their next holiday in Barbados is open to conjecture.

One thing is fact this document; the Nice Guidelines on how potential PWMS awaiting diagnosis should be treated is not adhered to. It calls for rapid diagnosis; I don’t think anyone can say that 6 months for your first MRI is rapid. http://www.nice.org.uk/nicemedia/pdf/cg008guidance.pdf

How and who you complain to I don’t know; presume it’s your PCT.

Good luck

George

I would complain. In more rural areas appointments are few and far between but 6 months is a bit of a joke. I got seen by my first neuro withinm 1month and when I went for a second opinion I got seen in just over 2 months. I don’t think either of the referrals were urgent. MRI - a routine wait is about 6w-2months in a london hospital.

I’d complain to PALS at the hospital or get your local MP on side even.

I work for the NHS too and some things are fantastic - I wouldn’t be doing my job if I didn’t feel I made a difference but as a patient I can say there are doctors and staff just there to say they’ve done there 9-5 and don’t give a hoot past that. People like that need a kick up the behind.

I’m glad you have your GP on side.

Reemz

X

I have no words about our system.

Too many of us are let down, ive seen it with my mum and shes been diagnosised for 5 years but we are still fighting for help to this day… and now sadly im going through the same thing.

I just hope you get some answers soon, ring the neurology department everyday if u can for a cancellation

Poppy xx

I have no words about our system.

Too many of us are let down, ive seen it with my mum and shes been diagnosised for 5 years but we are still fighting for help to this day… and now sadly im going through the same thing.

I just hope you get some answers soon, ring the neurology department everyday if u can for a cancellation

Poppy xx

Have you thought about going private for your first consultation? It can get your foot in the door quicker.

yeah its a dear one though, think its like £300?

Have you thought about violence :stuck_out_tongue:

Hi alison, I share your frustration with a system which constantly lets us down.

My local neuro referred me to a top MS man in Leeds. I rang to ask when an appt might be and was utterly gobsmacked when I was told, Yes, the referral has arrived and Dr Lily has discharged you. I thought id misheard and said that I hadnt been seen. it was repeated….dr has discharged you. My GP was aghast, my neuro too.I guess.

He recommended my neuro to do an LP. If that shows nothing, then to genetic testing.

I cant help feeling I have been black marked`, because I aired my discontent!

luv Pollx

Hi Alison, I really feel for you. I am dx and see an ms specialist at the Walton Centre. I am due to have a checkup in October and stupidly booked a holiday for the kids to go away as its half term. Anyway, it clashes with my appointment and guess when the next available appointment was…September 2013! I am in contact with my neuros secretary who is lovely. She will arrange a cancellation for me. If you know the name of your neuro then perhaps phone their secretary, you can check for a cancellation. They are rare but they do happen, I’ve decided to go ahead with the family holiday so have cancelled my appointment. Best of luck Alison, I hope you get sorted soon, Chis