HAS ANYONE BEEN TO THE AUTONOMIC NEUROPATHY UNIT AT QUEENS SQUARE

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hi im having test next week for autonomic neuropathy possible POTS and nerve conduction test at the autonomic unit queens square london. it is as an out patient over 3 days. im having to travel aprox 6 hrs ( patient transport as i have severe balance and vision problems )  i live in the north west and there is no other autonomic unit  than in london so they are providing NHS hotel accomodation which seems to be the norm. im very worried about this arrangement now as my health is bad and i never go out without family or friends (even then not far from home) im concerned i will be having test during the day then sent off to a hotel feeling unwell on my own as no one is able to go with me due to work/family commitments. if anyone has been could you please let me know what to expect. i realy dont want to put myself through this but my health is in decline and my doctor believes this is my best hope of a diagnosis after 3 years of going round in circles here. the consultant i saw in june was excellent and actualy listened to my extensive list of neuro problems for over an hour. its just so far to travel and not as an inpatient which i would be more comfortable with.

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  • Posted

    Does NHS hotel accommodation mean in the actual hospital? If so there would presumably be a call button for help.

    Surely under the circumstance a family member could make the effeort to go with you. A relative stayed in accommodation in a hospital while her partner was having a kidney transplant. She did have to pay for it.. This was in a London hospital.

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    • Posted

      hi thanks for your reply, no the NHS hotel isnt within the hospital they just use hotels to accomadate patients having test over a few days so no call button or medical staff at all. a family member could stay but no one to go as ither working or have children at school. think im just going to have to be brave and if im ill call the hospital ( i suppose when i get there they will understand how bad my health is and i may get better medical help there than my local NHS )
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    • Posted

      Be brave and I'm sure that you will be all right. I'm sure that this is a situation the hospital often have and may give you a contact number to call if needed.

      Before the cuts we have now the council sent a carer to stay with my mother over night until they had a bed for her in hospital and again for a night when she got home until I could travel to Scotland.

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    • Posted

      yeah proberbly is down to cuts but its all false economy in the end. i must have cost the NHS a fortune due to having the wrong tes, being discharged 4 times by different neurologist and having to travel by paitient transport all over the north west over afew years before finaly a new GP realised the only unit is in london. previously i had been sent to ENT for these test they sent me back to GP saying it was neuro they didnt do it sent me back to GP saying cardio would do it  (they did one test all day in cardio unit only to find out later wasnt correct test) so saving money hasnt worked in my case 
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    • Posted

      I waited six months to see a neurologist in Sussex after seeing an orthpaedic consultant. None of the neurologists tests gave a diagnosis. I paid for a lumbar spine CT scan and was advised to see a neurosurgeon. It was a 39 week wait so I went to one privately. He wanted an a complete spine and pelvic MRI scan. That did not give an answer so he said that I should see a neurologist who specialied in Neuopathy. The specialist centre for that is evidently in Bristol.

      There is one at Kings College in London who does one morning a week in Maidstone for NHS paients with an 18 week waiting list. That would be about a three hour journey.

      He does a private clinic one afternoon a week at Sevenoaks so I have opted for that as it is just an hour and half by train. But I'm betting that he will refer me back to a back specialist.  

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    • Posted

      what symptoms have you had problems with ? ive had about every neuro symptom there is but no answers as yet im hoping london clinic get to the the bottom of at least half of it. even though im dreading the travel, test and hotel bit of it i would recomend this hospital to anyone its the 1st time ive felt listened to when i saw the specialist in june( that was though 14 hr day getting there ,back and consultation) but he has arranged every test possible for neuropathy and autonomic neuropathy
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    • Posted

      Mainly numbness in my left foot and weakness in the tendons of that leg. The numbness makes walking unaided difficult and I cannot cope with changing surfaces nor walking down slopes. After a time the lower right leg often goes numb. It started very suddenly in June of last year.

      I did not have back pain to start with and put that down to my change of gait when it started but now I think it all stems from my lower back. 

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