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Author Topic: Advice needed!  (Read 9759 times)

Offline VictoriaPlum

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Advice needed!
« on: Oct 18 2010, 10:52 AM »
Hey all!

After spending 20 minutes on the phone to our GP this morning pestering them, I have managed to get my mum an appointment for this afternoon! (We had been told we had to wait until the 2nd Nov!)

So, how do I get our GP to listen to us and actually get something sorted! We seem to spend ages waiting for an appointment only to be told we have to go and see someone else! I just want them to start taking some action!

Rant over, sorry! But how do I approach the GP? I want him to know we're not being fobbed off but I don't want to antagonise him!

Any advice will be gratefully received :)

Thanks in advance,

x Victoria

Offline Christina

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Re: Advice needed!
« Reply #1 on: Oct 18 2010, 12:50 PM »
Hi Victoria

I would suggest going in with your mum and explaining what's been happening - how she's feeling fobbed off and feeling like nothing's happening for her.  Might be a good idea to jot down the things you want to say and ask so you don't forget anything. Try to remain calm and not get irritated but if the consultation isn't going the way you hoped, then just assertively reiterate the concerns. 

What are you hoping for from the consultation because that's what you need to focus on really?  I'm guessing this appt is to discuss the possibility of a referral to Mr Rea.  If so you can say that he's a highly recommended consultant and that you've got quite a bit of info from this forum about him - hopefully that will help not hinder! lol!  That you've researched treatments for MD and they're not being offered to your Mum at the moment by the consultants she's seen, so you want to see someone who may be able to offer her a more proactive line of treatment.

Hope that helps, my brain's a bit fuggy this morning.

Chris x
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barbara

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Re: Advice needed!
« Reply #2 on: Oct 18 2010, 01:36 PM »
Hi Victoria,
Sorry been away from my computer for most of the morning. Can't advise any better than Chris. so hope the appointment goes well.
Barbara x

Offline VictoriaPlum

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Re: Advice needed!
« Reply #3 on: Oct 18 2010, 01:44 PM »
Thanks for the advice. I'm going to try my best! It just feels like we're fighting a losing battle.

Will let you know how it goes.

x Victoria

Offline VictoriaPlum

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Re: Advice needed!
« Reply #4 on: Oct 19 2010, 09:01 AM »
So, thanks to the advice I went to the GP's yesterday with my mum armed with a notepad and pen and a list of all the questions we wanted answered.

I don't remember if I told you about how rude and negative the last consultant we went to see was, but I am now seriously considering making an official complaint. He kept speaking over my mum as if he wasn't listening and it turns out he wasn't  >:(

The first thing we did yesterday with the GP was to go through the report the consultant had written for her last appointment (28th September). The GP read the report and told us that according to the consultant my mum was getting better!!!  >:(

I was so angry! I told the GP that that wasn't the case and if anything my mum's attacks are getting more violent! No wonder we are still waiting to see the next consultant if on my mum's records it says that she is getting better!!!

Anyway the GP agreed to chase up the next consultant's appointment for us, so fingers crossed!

I asked if we could be referred to Mr Rea in Leicester and the GP hadn't heard of him! I told him that you lovely people on here couldn't recommend him highly enough and we'd really like to see him.

The GP googled him while we were there and said that it's a private clinic and that he couldn't refer us, it would have to be the consultant that refers us??? Does that sound right?

The GP has also signed my mum off sick for a month, so I'm a little concerned about her getting depressed being stuck in the house. Have you got any suggestions as to where I can take her out so she'll feel safe??

So, overall I think the appointment was positive, but yet again we are left waiting...

x Victoria

Offline jmurr

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Re: Advice needed!
« Reply #5 on: Oct 19 2010, 09:20 AM »
That all sounds so frustrating Victoria, your poor mum! and poor you! stress is certainly a trigger of the attacks so all this can't be helping much.
I am not sure what to suggest about where to take your mum atm to help her keep her spirits up because only she will be able to identify where she feels worse. I would probably draw on the support of friends and family to have visits with them because I agree staying in the house as tempting as it is can perpetuate the symptoms. Sometimes I push myself out to do something and end or feeling better but sometimes worse so it's all trial and error so don't overdo it. I try to carry on with my usual routine as much as poss and just have to stop if it gets too much. What does your mum do for work? It may be worth talking to her employers to consider letting your mum work from home or to go in for short periods doing restricted activities. I wish you luck, the waiting is the most difficult time and then when you get the diagnosis the adjustment takes a while too, but hopefully you will get some results soon!
Take care and wish your mother the best for me
Joanne

barbara

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Re: Advice needed!
« Reply #6 on: Oct 19 2010, 09:21 AM »
Hi Victoria,

http://www.uhl-tr.nhs.uk/sys_upl/templates/UHL_Directory/UHL_Directory_details.asp?esLtr=R&ItemId=3353&action=Display&pgid=9560&tid=161&DirectoryKeywords=&CategoryID=&OrderDir=ASC&OrderFld=

This link gives details of Mr Rea and his work at Leicester Royal Infirmary. I am sure your GP can refer directly.

You might want to print out the page and drop it into your GP.
Barbara

Offline Christina

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Re: Advice needed!
« Reply #7 on: Oct 19 2010, 09:29 AM »
I agree with Barbara I think your GP can refer directly to Mr Rea too. He does do private clinics along with most Nhs consultants so there's nothing unusual about that. Even if he was just private there is no reason why your GP can't refer. I believe I'm right in saying that these days patients can ask to be referred anywhere in the country for treatment but I'll check. Does anyone else know the answer on that question?
not waiting for the storm to pass, but learning to dance in the rain ...

barbara

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Re: Advice needed!
« Reply #8 on: Oct 19 2010, 09:34 AM »
Hi Chris and Victoria,
I am sure you are right about referal out of area but in any case Victoria Leicester is close to you and local. I think the GP might be protecting his GP funding by suggesting that the Consultant refer thereby passing the cost to the NHS Trust instead. Am I cynical or what :-\
I may be making an unwarranted suggestion here but the thought goes through my head.

Barbara x
PS. Check out
http://www.nhs.uk/NHSEngland/AboutNHSservices/NHShospitals/Pages/HospitalsSummary.aspx

Kath

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Re: Advice needed!
« Reply #9 on: Oct 19 2010, 09:42 AM »
http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx

This link above might help Victoria. Good luck with it all
Kath
x
p.s. I've just seen I've overlapped with Barbara, same website, different page!

Offline Christina

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Re: Advice needed!
« Reply #10 on: Oct 19 2010, 09:53 AM »
Great stuff guys!  Thanks for that.

Chris x
not waiting for the storm to pass, but learning to dance in the rain ...

ManiloonySally

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Re: Advice needed!
« Reply #11 on: Oct 19 2010, 10:21 AM »
Hi Victoria,

Mr Rea is my Consultant and i don't live near Leicester at all.  I originally saw Mr Cooke who sadly passed away and Mr Rea took over. 

I had been recommeded the Leicester Balance Centre and phoned to see if i could be seen there.  I could not be seen on the NHS as they said it wasn't my area but if i was prepared to pay privately for the one appointment i could be seen and then if necessary carry on being treated there by the NHS.  This is what i did, and i honestly can't fault Mr Rea, he is excellent, he will listen to you and is extremely supportive.  As you live pretty close anyway, i can see no reason for your GP to say you cannot have a referral!  Why don't you phone Mr Rea's secretary and ask her directly, i really hope you can get your Mom to see someone soon.

Sally x

Offline VictoriaPlum

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Re: Advice needed!
« Reply #12 on: Oct 19 2010, 01:30 PM »
Thanks so much for all the advice! I honestly don't know what I'd have done this past week without all of you  :)

I have written a letter to my mum's GP giving him all the contact details for Mr Rea and my friend works near the surgery so she should be delivering it for me any time now!

I will see what our GP says and if he still has a problem I will contact Mr Rea directly!

Thanks again  :)

x Victoria

Offline VictoriaPlum

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Re: Advice needed!
« Reply #13 on: Oct 20 2010, 09:01 AM »
It's me again!

Our GP should have received my letter requesting him to refer my mum to Mr Rea yesterday.

How long should I wait to hear back about this? I'm really impatient and was considering contacting Mr Rea directly as Sally suggested. Do you think this will just confuse matters or is it worth a try?

Also a few people on here have suggested going private for the first consultation then going on the NHS. Should I do this or should I just be patient and see what the GP will do??  :-\

Thanks in advance,

a very impatient Victoria x

barbara

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Re: Advice needed!
« Reply #14 on: Oct 20 2010, 09:44 AM »
Hi Victoria,
I think you have to allow your GP chance to act.  :)
If he organises an appointment with Mr. Rea that is at the upper end of the 18 week wait then you might want to concider having a private appointment. Be careful though because there have been moves in the past to prevent people having a mixture of NHS and Private. Some cancer patients arranging to have prescribed   drugs privately have had their NHS provision withdrawn. (my very first appointment to see a neurologist was a14 month wait :o)
I know the waiting is hard but your GP has many other patients who need urgent referals too.
Many MD patients find they wait months to get to the right consultant only to find that they are still on the waiting game because MD is difficult to diagnose and has many possibilities for treatment. It is often a 'wait and see' scenario so as not to make a mistake and do harm. Once we get onto the route of destructions there can be no going back so these have to be approached with caution both by the patient and the surgeon.
You are doing a great job supporting your mum and it is really hard to watch what is happening to her but it does take time unfortunately.
Stay strong :)
Barbara

Offline Christina

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Re: Advice needed!
« Reply #15 on: Oct 20 2010, 10:44 AM »
Hi Victoria

Unfortunately Mr Rea won't be able to see your mum without a referral from your GP or another consultant, so even if you contact him he won't be able to make anything happen for you until the letter arrives.  I would leave it a week and then ring your surgery and ask about it.  In the meantime he might well contact your mum if he wants to talk about it with her further.

Chris x
not waiting for the storm to pass, but learning to dance in the rain ...

ManiloonySally

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Re: Advice needed!
« Reply #16 on: Oct 20 2010, 10:53 AM »
Hi Victoria,

I know it is very frustrating, but i have to agree with Barbara, you need to give your GP the time to send the referral.  I went to two ENT Consultants in my own area who were absolutely useless and simply said you have MD live with it, without even doing any tests.  I waited a long time before i went to the Leicester balance centre, but it was worth the wait.  Mr Rea, however, will not diagnose there and then, he will want to do different tests and as Barbara sas, there are many vestibular disorders that mimick MD, Mr Rea will be very supportive but he won't give you the diagnosis of MD unless he is 100% sure.  He always diagnosed me as "Probable Meniere's disease" until i finally had all my tests done, and my audiograms showed hearing loss etc.. i am now bilateral, but he only diagnosed me as Bilateral in 2009 again after more tests.  I know it is frustrating, but you do need to get the correct diagnosis to be treated in the best way.

I hope this helps a bit and we are always here to keep you going.

Sally x

ManiloonySally

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Re: Advice needed!
« Reply #17 on: Oct 20 2010, 10:54 AM »
Sorry Chris, we must have been typing at the same time :)

Sally x

Offline VictoriaPlum

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Re: Advice needed!
« Reply #18 on: Oct 20 2010, 11:51 AM »
Thanks guys.

I know I'm being impatient, but I'm just desperate to get something sorted. I feel so helpless and I hate seeing my mum suffering  :'(

My little sister is getting married next December so my mum is desperate to get something sorted for then as she's terrified of ruining my sister's big day!




Offline VictoriaPlum

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Re: Advice needed!
« Reply #19 on: Oct 20 2010, 12:12 PM »
Sorry for being dense, but what is bilateral Sally? Is it a form of MD?

barbara

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Re: Advice needed!
« Reply #20 on: Oct 20 2010, 12:24 PM »
Hi Victoria,
Sorry this is going to worry you even more. The effects of Menieres Disease or other vestibular problems can be caused by problems from one ear or both. Most people start with just one and some go on to have problems with both, This is one of the reasons not to rush into destructive treatments because we do not know whether we might develop bilateral problems. Destroying one side can be ok but it is not usual, though not unheard of to destroy both. It is important to determine through the tests available which ear is causing the problem.
Not everyone goes on to become bilateral but some do and this then limits treatment options.
Barbara x

Offline VictoriaPlum

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Re: Advice needed!
« Reply #21 on: Nov 01 2010, 02:36 PM »
Hi all,

I need some more advice please!

My mum rang Mr Rea this morning and got an appointment for the 10th November!! We were so impressed and so happy at how quick she was able to get an appointment :)

Anyway the problem is, about an hour later mum received a letter for an appointment for another consultant (a referral from the consultant we saw in October who was very negative and basically said that they guy he was referring us to is very cautious and unlikely to do anything!)

So now mum has 2 consultant appointments with different consultants and to top it off they are only a day apart!!

What should we do? Should we just go to both appointments or choose one over the other or speak to mum's GP about it all???

It's great that things are finally starting to move along, but not sure what we should do!!

Thanks in advance

x Victoria

Offline Susie

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Re: Advice needed!
« Reply #22 on: Nov 01 2010, 02:42 PM »
Hi Victoria,
I have no personal experience of Mr Rea however have only read great comments about him on here.
in view of that and the disappointing response you received from the other consultant my suggestion would be to cancel him and stick with the Mr Rae consultation (that's what i would do).
It so so important to find a consultant to knows,understands and care about people with MD and they are unfortunately quite rare.
Good luck to you and your mum with whatever decision you make.
Susie.
"Some mornings... it's just not worth chewing through the leather straps"

Offline Christina

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Re: Advice needed!
« Reply #23 on: Nov 01 2010, 10:47 PM »
I agree, Iwould suggest you see Mr Rea - he is well thought of and highly recommended.  Be a shame not to see him after all your hard work to get the GP to refer.

Chris x
not waiting for the storm to pass, but learning to dance in the rain ...

Offline VictoriaPlum

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Re: Advice needed!
« Reply #24 on: Nov 01 2010, 11:26 PM »
Thanks guys. We'll definitely go and see Mr Rea, but do you think we should still keep the other appointment or cancel it?

x Victoria

Offline Christina

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Re: Advice needed!
« Reply #25 on: Nov 01 2010, 11:37 PM »
I think it might muddy the waters if you see two consultants Victoria and I'm not too sure that either consultant would be happy if they knew you were seeking advice from more than one at once.  They can be a bit funny about that sort of thing. However, there is nothing to stop you seeing both consultants if you decide to go that way, only your mum can decide.

Chris x
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Offline VictoriaPlum

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Re: Advice needed!
« Reply #26 on: Nov 02 2010, 02:34 PM »
Thank you :)

Mum's decided to cancel one appointment and just go with Mr Rea :)

Besides all the good things people on here have said about him, I like the fact that his name is an anagram of EAR! Makes me trust him a bit more somehow - he must know what he's talking about  ;)

x Victoria

Offline Christina

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Re: Advice needed!
« Reply #27 on: Nov 02 2010, 05:12 PM »
Yes, I reckon he did that on purpose!

Chris  :D
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Offline HelKombi

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Re: Advice needed!
« Reply #28 on: Nov 03 2010, 05:24 PM »
Hi Victoria,

I have been reading your posts throughout the forum and I can understand you very well. During almost 6 years I was everything to my mum while she was fighting cancer. I feel that it is a wonderful thing the way you are helping your mum and it is of great comfort to her ... and you, that you do so.
Regarding chasing appointments I think you have that cover by now, but in one of your posts you mention that you wanted her to feel safer at home.

For me one of the things that itīs helping me is having my house equipped with same extra security. For example I do find, most times, hard to get in and out of the bath; the stairs although there is one rail itīs not enough as sometimes I have to go up on my knees and hands or down using my bum. I do this because I have fallen down the stairs twice and injured myself seriously on the last time.

Also, when getting out of bed in the morning it seems I am in a carrousel, it has happen a few times that I just wobbly against the wall and bang my head.
So I decided to contact the occupational Therapy services of my borough – Merton Council – and after a visit to their assessment centre last Monday, they are going to install the following:
Extra rail on the stairs
Handles on the bath wall and same sort of a large “bar” that will allow me to get in and out of the bath safer and it will allow me to sit down whistle showering, if needed.
Handle near the toilet.
A vertical bar on my side of the bed, to help to get my balance once Iīm up and before moving away from the bed.
At first it all looked very “disablening”, very “hospital” look ... I felt that I didnīt want my friends to come over and see all this “disable” apparel. But after a conversation with my partner and the Lady that assessed me at the OTC, I realised the main important thing was my sense of safety. So perhaps you would like to sound your mother on this.

Other thing you can do: While I was helping my mum and because she would fall quite often in the house and would not be able to stand up on her own – she was frail because of Quimio – I bought her this mobile necklace holder, so that she could have the mobile with her at all times and call me for help.

Victoria, while we are on this subject... I donīt know how old are you, if it is only you in the family ... but do make sure that you do think of you and your social needs. If you become energy drained, mentally tired you are of no help to your mum. To help your mum itīs also to take care of you.
Do ask for close family support, most people donīt come forward as we do.

Anything else that I can do please let me know.

Blessings for you and your mum,
Helena
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NEWOSA65

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Re: Advice needed!
« Reply #29 on: Nov 04 2010, 09:47 AM »
Hi Victoria,

Sorry to hear about your mum... Mr Rea is very knowledgable, bit like Mr Brookes, but despite all the ups and downs i have had with Brookes he in my opinion would still be the pick of the two when it comes to treatments that are offered.

Hope things improve soon :)

Offline VictoriaPlum

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Re: Advice needed!
« Reply #30 on: Nov 04 2010, 10:00 AM »
Thanks Helena :)

I'll try suggesting some of those things to my mum.

I hope you are ok and that the railings etc are helping you.

x Victoria

NEWOSA65

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Re: Advice needed!
« Reply #31 on: Nov 04 2010, 10:10 AM »
Hi Helena,

Can't believe it - yet another person from Merton!  Are you near Bushy Road/Mertonhall Road area in Wimbledon SW19 by any chance or more Colliers Wood part of area?  Take care, Simon

Offline HelKombi

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Re: Advice needed!
« Reply #32 on: Nov 04 2010, 11:44 AM »
Howdy!  8)

I live in the border - ehehehe - between Tooting and Mitcham!
Maybe one of these days we should go for a drink or a wobly walk in the park!!
It would be nice to meet more Menieres!  :)

Hugss
Helena
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