Struggling to get referral

Hi there

I’ve not posted on here for a long, long time. I had two years without a MAV long bout, just the usual weekly burst of spin that I’ve learned to live with over the past 30 years. That all changed in September - I had the most severe vertigo bout since the very first when I was 12, but this time it’s lasted the longest ever - I’m now up to over 2 months duration. There’s been some improvement, as I couldn’t move at all on day one, now I can get out and about but I am feeling so ill. I’m unable to move in certain ways without rotational spin, I get a good day but seem to pay for it the next with exhaustion. I drive very occasionally, am nervous of going to far anywhere on my own. For the past month I have had a stream of constant migraine, with just 1 1/2 days without. I can’t describe how ill I feel, and the GPs focus is more about getting you back to work than getting you better or even getting a treatment plan together. I feel like saying that I need to learn to balance again before I can start going from walking to sprinting!

I’ve been trying to get a referral to a neuro-otologist via the NHS. I was instead offered ENT - so I settled for that as a first call. I wasn’t happy with my surgery (I moved location so it was new to me) due to the lack of help and understanding, no review of migraine meds etc and promoting private referrals. I keep being told that the PCT won’t allow them to make direct referrals to NHS balance clinics. So after many tries with that surgery I just changed to a new one. My new GP at least had time for me, he wasn’t watching the clock as I was speaking and talking to me, but still I am hearing that GPs can’t direct refer outside the PCT. It appears to be purely political. Anyhow, he was keen for me to see the ENT and asked me to check my referral had gone through. The hospital hadn’t received it so I called the old surgery and they had not even made the ENT appointment request 2 weeks on. So that is another month lost to me by the time another request is made.

I’ve cried this morning, the frustration and desperation just got to me, I am in a very dark place right now. I am about as isolated and alone as I could be, up against some appalling health care providers who simply don’t care or understand about MAV. I’m disabled as I’m so limited as to what I can do, can’t work, can’t live a normal life. I don’t want a battle with health care providers I just want some help.The lack of knowledge and support from them has contributed to my spiral into depression. I am already sitting questioning whether it is all really so bad, I must be imagining it and asking for too much. I then recall my husband having to hold me up to stop me falling when I went to pick something up and the room spun so bad I didn’t know what was up or down. He’s so stressed about how unwell I am he’s even coming up in skin allergies.

I’m questioning whether I should now just sit and not bother with referrals as it’s getting too stressful for me. Sorry for such a moany post after a long absence.

I completely sympathise with you being in that awful lonely dark place - it is a horrible place for sure.

Is there any way you could come up with the funds to see Dr Surenthiran privately, once? This would be around £200 - £250. If you can mange to fund that then you can get put over onto his NHS list. He did this for me, and for others I know too. I saw him privately and paid once, and he then transferred me across. This would be a way of getting round the system, but you would need to fund that first appointment. I’m sure it would be worth it for you though as once you’re his NHS patient, that’s where you’ll stay.

By the way, I was also told that the PCT stuff they tell you is rubbish, and that you can see whichever specialist you want with a referral letter from your Doctor. I’m not sure whether that’s true or not, but I do know that when my doctor first told me that PCT thing (and before I’d gone the private route) I wrote him a snotty letter telling him that I can be referred to who I like - there is some legislation somewhere I’m sure that states this but you would need to double-check. Miraculously the surgery then agreed and said I was right! By that time though, I had set the private wheels in motion so I stuck with that.

So I think you have two options - either pay for one private appointment and then get transferred across, or kick up a fuss with your GP. I wish you all the best x

Hi Sally,

Well, so this PCT and GP referral pass the buck on direct referrals is not only happening down here in the SW then!
I’ve been passed from pillar to post between GPs, the PCT and PALS. PALS insist all the GP needs to do is refer me, the GP says the PCT won’t refer from them. I fear there is a complex game of obstruction to services going on. I suggested that I would submit a series of FOIs to find out how many direct referrals are received and approved by the local PCT - I thought it might give me an idea to what was going on. Of course the final response is that perhaps the GP doesn’t think there is clinical need - I asked my GP that question outright - he was quick to say it was nothing of the sort.

I would like to go private, but I just don’t think I can right now. Being off sick from work for this long has used up all my sick benefits with my employer, now I’m just on SSP so money is tight. Another feature of MAV! I’ll just have to see if there is any spare at the end of the month. That would be the easiest answer and the one which would have saved me untold stress. To be honest, I’m not up for a fight with my new GP. I’m just going to have to wait and save up to see Dr S and see what ENT offers in the meantime.

I’ll try to find out more about the right to choice - I was told by PALS that I have the right to choose to go anywhere in the country, but of course the GP has to request it on my behalf. Here in Cornwall that appears to be a problem, the GPs simply won’t refer. :frowning: It stinks really, as we pay in to the NHS from our salaries and yet it seems MAVERS are excluded from many of the services. When I’m a little better I shall look at finding out more and campaigning on this.

Hi Mrs. G,

I can totally relate to you right now with how you are feeling. I am currently also waiting for a referral to Dr. Baloh at UCLA and may or may not be able to get it. My health group has it in review right now and I guess it could take months or they may say no.

I can’t drive due to visual vertigo and also have the same problem as a passenger. My mom says it’s just anxiety, but even when I take xanax and ride in the car I experience the same visual vertigo or weird tunnel vision/dizziness. I have never had trouble riding in a car or driving and it makes me miserable. I am also having trouble in stores with the lighting. I am not leaving the house much at all anymore and when I do I have to depend on my husband or someone else to drive me.

Please let us know if you get your referral or when you are going to the doctor.

Take care,
Donna

Mrs G,

I am in the UK and suggest you keep ringing your old surgery until they tell you the letter has been sent off. Then dont wait too long before ringing the ENT dept to see if the letter has arrived and if an appointment has been made for you. Then ask if the confirmation letter is in the post. When you get to ENT you may find they will refer you over to who you want to see. Thats how I got to to see specialists in two other parts of the country, specialists that I chose. Keep chasing that letter (dont worry about making a pest of yourself), I have done this in the past (you never know when a letter just gets left at the bottom of the typists tray). I probably got a reputation for being a pest in the past, our NHS (can sometimes be short for No Help Sodoff). Dont be defeated, keep pushing for what you want.

Christine

— Begin quote from “Mrs G”

this PCT and GP referral pass the buck on direct referrals is not only happening down here in the SW then!
I’ve been passed from pillar to post between GPs, the PCT and PALS. PALS insist all the GP needs to do is refer me, the GP says the PCT won’t refer from them. I fear there is a complex game of obstruction to services going on.

— End quote

I encountered something like this in the NHS although it was for a different condition. I encountered a combination of incompetence, unhelpfulness, ignorance and penny-pinching.

(1) In the end my solution was to call the clinic direct and ask them what the routes are to get a referral to them. Interestingly they went on to tell me that they were funded nationally (remember this wasn’t for a balance clinic) and that they took referrals direct from GPs or from hospital specialists although they did not have to take on all referrals.

(2) Alternatively you could phone the relevant commissioning officer in your PCT and ask what their policy is regarding referrals to the clinic you want.

(3) There is also a rarely used procedure to request funding for a treatment on an exceptional or special need basis but you would need to put your case forward persuasively and in the end may not have much success.

Hi there, thanks for the supportive responses.

Donna - visual vertigo, that is really not pleasant and makes getting around really difficult. I’m sorry you have that. I had that at the start of this bout when I was a passenger in a car: it wasn’t caused by anxiety, but the experience certainly caused anxiety. I can now drive, and be a passenger, but only on my good days will I drive. I really hope you see some improvement soon. The not being able to get out and about, temporarily losing that individual freedom and security is the most difficult part. Like you I rarely go out beyond my local area alone now, mostly with my husband at weekends. I can relate to the issue about lights - strip lights and lighting in supermarkets are the worst. I do hope you get to see Dr Baloh soon, he seems to be in much demand, and for good reason.

Christine - I’m off to see my new GP to start the ENT referral process next week, so much time has been lost. I should have a phone call within 3 days from the hospital with an appointment. I’ll be chasing if not. Then I’ll focus on getting the consultant to refer me on to the balance clinic if I can. Of course, if he can give me the type of treatment plans/help offered by the balance clinic then I will settle for that, but I’m pretty sure they don’t. I’m sure I’ve already been marked as a pest or nuisance! You are right about chasing things, some of the offices seem very blase and disorganised.

Wexan - You have hit the nail on the head, it is a combination of those things. I have pretty much done all those things you suggested, called the balance clinic to confirm they would take a direct referral from a GP from any PCT, spoke to PALS who said that the clinic was on their list of accepted referral types and that all the gp needed to do was to refer. PALS said any referral would go to the committee and if that was refused, as you have noted it could go for special individual funding. The mechanisms are there for the referral - but it seems the GPs are scared to refer and I can’t even get them to try. They’ve also confirmed it is not because they feel I don’t have the need. I’ve shared all this information with the GPs I’ve seen regarding the referral but to no avail. I’ve been referred in the past when I’ve asked my previous GP, in my old location, to refer me without any problem at all on another issue in the past. The GP didn’t hesitate to do the referral then, but of course did advise that it is down to the PCT to approve the request. It concerns me that this is down to the issue of migraine and vertigo being seen as something that should stay in the care of primary care, or in reality ‘no care’.

It is so frustrating! I’ll focus on next week as it’s something positive, with a GP who seems considered and helpful at least.

Sally’s quite right. Do this. stick it on the credit card. The journey will be hell but use valium to calm the brain down.

— Begin quote from “sallysp”

I completely sympathise with you being in that awful lonely dark place - it is a horrible place for sure.

Is there any way you could come up with the funds to see Dr Surenthiran privately, once? This would be around £200 - £250. If you can mange to fund that then you can get put over onto his NHS list. He did this for me, and for others I know too. I saw him privately and paid once, and he then transferred me across. This would be a way of getting round the system, but you would need to fund that first appointment. I’m sure it would be worth it for you though as once you’re his NHS patient, that’s where you’ll stay.

By the way, I was also told that the PCT stuff they tell you is rubbish, and that you can see whichever specialist you want with a referral letter from your Doctor. I’m not sure whether that’s true or not, but I do know that when my doctor first told me that PCT thing (and before I’d gone the private route) I wrote him a snotty letter telling him that I can be referred to who I like - there is some legislation somewhere I’m sure that states this but you would need to double-check. Miraculously the surgery then agreed and said I was right! By that time though, I had set the private wheels in motion so I stuck with that.

So I think you have two options - either pay for one private appointment and then get transferred across, or kick up a fuss with your GP. I wish you all the best x

— End quote

Start with the diet now e.g no caffiene , citrus, dairy, chocalate, msg that will give you a head start. I understand about the money but if you have a credit card or fialing that sell something on ebay just get to Dr S and he’ll start you on drugs straight away.

— Begin quote from “Mrs G”

Hi there

I’ve not posted on here for a long, long time. I had two years without a MAV long bout, just the usual weekly burst of spin that I’ve learned to live with over the past 30 years. That all changed in September - I had the most severe vertigo bout since the very first when I was 12, but this time it’s lasted the longest ever - I’m now up to over 2 months duration. There’s been some improvement, as I couldn’t move at all on day one, now I can get out and about but I am feeling so ill. I’m unable to move in certain ways without rotational spin, I get a good day but seem to pay for it the next with exhaustion. I drive very occasionally, am nervous of going to far anywhere on my own. For the past month I have had a stream of constant migraine, with just 1 1/2 days without. I can’t describe how ill I feel, and the GPs focus is more about getting you back to work than getting you better or even getting a treatment plan together. I feel like saying that I need to learn to balance again before I can start going from walking to sprinting!

I’ve been trying to get a referral to a neuro-otologist via the NHS. I was instead offered ENT - so I settled for that as a first call. I wasn’t happy with my surgery (I moved location so it was new to me) due to the lack of help and understanding, no review of migraine meds etc and promoting private referrals. I keep being told that the PCT won’t allow them to make direct referrals to NHS balance clinics. So after many tries with that surgery I just changed to a new one. My new GP at least had time for me, he wasn’t watching the clock as I was speaking and talking to me, but still I am hearing that GPs can’t direct refer outside the PCT. It appears to be purely political. Anyhow, he was keen for me to see the ENT and asked me to check my referral had gone through. The hospital hadn’t received it so I called the old surgery and they had not even made the ENT appointment request 2 weeks on. So that is another month lost to me by the time another request is made.

I’ve cried this morning, the frustration and desperation just got to me, I am in a very dark place right now. I am about as isolated and alone as I could be, up against some appalling health care providers who simply don’t care or understand about MAV. I’m disabled as I’m so limited as to what I can do, can’t work, can’t live a normal life. I don’t want a battle with health care providers I just want some help.The lack of knowledge and support from them has contributed to my spiral into depression. I am already sitting questioning whether it is all really so bad, I must be imagining it and asking for too much. I then recall my husband having to hold me up to stop me falling when I went to pick something up and the room spun so bad I didn’t know what was up or down. He’s so stressed about how unwell I am he’s even coming up in skin allergies.

I’m questioning whether I should now just sit and not bother with referrals as it’s getting too stressful for me. Sorry for such a moany post after a long absence.

— End quote