Disgusted

I had been in hospital a month after bad episode and my body reverted back to jerky walking etc like last year when diagnosed with Antiphosphilipid syndrome in small brain.While in hospital was told they couldn't help me anymore and I would have urgent referral to Dr Oliver Bandman neurologist at Sheffield and to be accessed prior to this for my APS at St Thomas London under Professor Hughes team.Then a neurologist at the hospital stepped in and all that was cancelled and I was discharged saying to reduce Pregabalin and would see me in 6wks and if still not walking then referrals would go ahead

I have had no appointments come through so just rang to enquire.Apparently I won't be getting one as wasn't the neurologists patient seen in clinic and my rheumatologist appointment isn't til February so it's all crazy.After being in hospital for a month nothing is going to happend. Seems like I have been fobbed off.

I see my GP tomorrow and will ask what I can do.Can he refer me to London and Sheffield.

25 Replies

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  • My advice to you is to take somebody with you to the appointment and demand to be referred to Professor B, Hunt at St Thomas' Hospital, London. Explain to your GP that it will help them look after you, the hospital are behaving in a dreadful manner, this is your life, not theirs! Make sure you fight for this, take your most articulate, friend, relative, colleague or neighbour with you, go armed with what you want and why do not be fobbed off. Mention that you have spoken to us, and that the medical community are supportive of our work to help patients. MaryF

  • Thankyou so much Mary.I do feel I have been treat awful.The nurses were brilliant but doctors not.I have had to go along with how I was discharged but now after talking to one of the doctors secretards I am livid.She said what is put on the discharge letter doesn't mean you will have an appointment to return.My rheumatologists secretary said I don't even have an appointment until February and it is him who has dealt with my APS.Badly thou.

    I will talk to my GP tomorrow and insist he refers me.Will it depend if it is in the surgery's budget thou?

  • Ok what I would do if it were me would be to stick in a complaint straight away to the PALS department of the Hospital and tell them that they are meant to discuss and AGREE your treatment pathway with you, NOT dictate one and then change/cancel it on a whim. NICE guidelines say that you must be involved in your discussions and AGREE with decisions that are made.

    Secondly, go to your GP appointment and tell them that you are not satisfied with what's happened. That you need to be under an APS specialist NOT a Neurologist as they don't understand the condition and you need an urgent referral to GUYS not StThomas (as they have moved) Lupus Clinic which your GP can request for Thursday mornings when they hold emergency clinics. He may have to phone through to explain you need an appointment because otherwise it will take weeks possibly months to get an appointment there.

    Do not accept this behaviour from your hospital it's deplorable. Good Luck!

  • I was going to complain to PALS but I felt I was being held ransom to reduce the medication and then only would be re referred so dare'nt as would jeopardise this.

    After ringing hospital this morning and listening to being told there isn't a follow up appointment as I wasn't his patient, I will

    Thankyou for good advice.If my GP can't do you know how much it is to pay private

  • If you were going privately, the probably it would be to The London Lupus Centre. MaryF

  • This is great advice and yes I would go with this, although I see Prof Hunt at St THomas' but they are intertwined those two hospitals anyway. The emergency clinic on a Thursday is a very good resource for the GP to tap into, as it is in their interest to be able to manage you effectively especially after the farce you have been involved with under yet another Neurologist!. MaryF

  • I was going to complain to PALS but I felt I was being held ransom to reduce the medication and then only would be re referred so dare'nt as would jeopardise this.

    After ringing hospital this morning and listening to being told there isn't a follow up appointment as I wasn't his patient, I will

    Thankyou for good advice.If my GP can't do you know how much it is to pay private

  • I think my Gp is great but a while back when I was being pushed from pillar to post with my knee and no one was diagnosing the problem I said to him when my knee is sorted I want to be referred to an APS specialist preferably Beverley Hunt at Guys. He readily agreed but said why Guys. Well that's where the specialists are based. This was clearly news to him as he thought by referring me to the local hospital was good enough but the service has been total pants. So don't be afraid to push for what you want, just state what you need in a matter of fact voice. I have no doubt he will sort the referral out if and when they ever sort my knee. Although I saw a different GP the other day and she seemed quite clued up and suggested my knee is probably Aps related anyway and the slow progress is no doubt Aps related.

  • My GP does listen to me which is a bonus. I have been diagnosed with APS since last year and am on warfarin but this recurrent jerky walking and involuntary movements has come back and they didn't have a clue.I need to see someone urgently who can help me walk again and stop this happening again

  • The London Lupus Centre (private) would be around the £200 mark providing you can take all your tests with you and only need the consultation. I'd see the GP first and push for the emergency Thursday appointment and see what happens then if you can't get seen quickly take the private option. Even if you go private still push for the NHS referral so you have that to fall back on in the future.

  • Ok thankyou.Not sure I would be able to get test results unless my GP has them on record but will enquire

  • Hi ,

    I cant believe this is England 2016.

    I have followed your time at the hospital etc etc and I think you have had very bad treatment!!!

    Have you got copies of all your days at the hospital and the tests and bloods taken?

    I can not give you advise how to proceed but APsnotFab and Mary can!!!! Please follow their advice. They know a lot how to do.

    Warning for Neurologists as you know alrready.

    Now I wonder how you feel besides that you are angry about the bad behavior from the hospital?

    Best wishes from Kerstin in Stockholm and please let us hear how it goes for you.

  • No I have no record of tests or bloods taken.All I have is a discharge summary. Knowing there are no appointments follow ups etc has left me feeling abandoned.I will speak to my GP tomorrow and see if he can refer me.

  • Your Gp might have a record of your test results, ask him.

  • I will do thanks

  • You are entitled to see all your medical records.

    I hope this link works.

    nhs.uk/chq/pages/1309.aspx?...

  • Wow! Thank you so much 😊

  • You are welcome.

    Read the section about fees. I think you can get your complete record for £50

  • I can't tell you what to do in the UK, but I just wanted to commiserate. I had similar problems in the US, finally having a seizure, and on and off the neuro in the hospital would come in and tell me I had and "episode," but not explain what an "episode," was, and since one neuro had shown me seizures on the EEG, I asked what that the seizures were, and I was told the were "artifacts." I left the hospital with a referral to a psychiatrist! It took me a year to get things somewhat sorted out and 3 1/2 years to get it totally sorted out. I don't know what the heck is wrong with these neurologists and even rheumatologists don't automatically understand this variant of APS. But I do wish I had had a good advocate who could have really spoken up for me.

    I'm glad the folks here are giving you good advice and hope you get good help soon!!!!

  • You are entitled to copies of your test results. I call my GP''s surgery and request mine I don't encounter any resistance but sometimes they charge me for the paper! Lately I ask for them to be emailed. It is wrong that you have such a battle to get the help you need but if you can muster the energy it will benefit you in the end.

    We are supporting you and thinking of you x

  • U poor dear ..can i ask what do you mean jerky walking ? ..I'm walking funny since last Nov nobody figure out why . .So said to 2 doc's as got mri scan all bits but that weren't taking me seriously ..going APS specialist in London ...so my lovely GP.. nurses ..getting everything together blood test APL levels lupus tests all bits hospital sent to them ....the BEST doc APS patient needs is GP ..hope you have some back up ..😊

  • Yeh it's like my right hip jerks that side across to left making my arm swing round to correct myself.

    My GP is going to refer me to the top neurologist at Sheffield but he can't refer me to St Thomas as there's nothing on my discharge letter stating this. So I have complained to PALS about how I've been treat badly and left in limbo.She has written a report to them and I should hear back by Monday .If not I will contact them again as I need to see specialist who can help me

  • Good Luck on Monday! You are great!

    Kerstin

  • After complaint to PALS only resulted in consultant agreeing to refer me to top neurologist in Sheffield. This is same as what my GP has done so consultant doing nothing extra abdominal complaints case has now been closed . hopefully I will get better help with this top Professor at Sheffield and he will refer me to an APS specialist there too and get me walking properly again and stop this recurring

  • As I live in Sweden I can not give you advise what to do with your "closed case".

    I advise you to read all the good advises you have had and ask for copies of everything happened in your case.

    Ask if the top-Neurologist is an APS-Specialist?

    Kerstin

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