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AVM Survivors Network

Anyone having NHS problems?


#1

We are coming to the end of our tether with the NHS and need some advise.
- The NHS are failing to support us.
- They failed to diagnose for 10 years.
- They have performed some questionable treatment without consent.
- We are struggling to get an appointment with a specialist consultant.
Anyone else having frustrations with them?
Anyone know the legalities within the NHS, we are looking to take this further.
Any advice would be greatly appreciated
Many Thanks


#2

No, I had an AVM in the brain, and they saved my life... and they are still with me every step of the way :o)


#3

Recently I said god bless the NHs. Can’t complain about doctors but recently been told cant do my GKS until next year due to lack of finding! Wtf? To answer your question you can try health ombudsman or local mp to help you. Wishing you well and luck!


#4

i can relate to this,my daughter had an avm in womb,admitted 2 A&E 16 times with aggressive bleeding finally mri scan done 9 mths later to find avm all over uterus radical hysterectomy carried out at 19,still suffering 12mths on left with muscular wasting disease in chronic pain daily and still no mri scan done 2 see wot the hell is goin on,,,,just keep pumping her with tramadol,pregablin 2 no effect,,,,so i surely sympathise with u guys,i dont know what else 2 do either x


#5

Will give u a shout 2moro mate x


#6

Kay n Gaz I’ve dropped u request as I can’t inbox u without being friends, I have had one round of gk, please feel free to inbox me with any questions x


#7

Thanks Linda. So sorry to hear that, we had similar problems to start with. How can they put a price on your life? It’s ridiculous the way the nhs service is run.
I hope you manage to get the funding overruled and manage to get this sooner. Good luck.
All the best x x


#8

Hey Anne Marie, I’m so sorry to hear all your daughter has gone through, at such a young age too, she should be in her prime years. Life is unfair at times. However the nhs don’t seem to help the situation, they just prolong it. Pumping people full of drugs seems to be their option for everything, but once you start your body ends up reliant on them. And all drugs come with their own fun side effects, It’s a vicious circle.
Have you made a complaint to the nhs about their failure to diagnose??
All the best x x


#9

Thanks gee, just accepted request. Be interesting to hear your story. X


#10

hiya guys,yes we have complained,own gp admitted he doesnt know what 2 do,,,,,,,,,errr hello thought they was meant 2 treat people absolute joke,where is your avm ?and what has happened so far think its a release to talk 2 people who are goin through similar situations x


#11

KaynGaz, thanks for your comments. My surgeon is fighting the funding issue. Feel sorry for the doctors it really isn’t their fault.

Gee will call you on Monday for a chat!! Linda x


#12

Hi, Sorry to hear that you are having problems with the NHS also. I have been diagnosed 19 months and still have not started my embolisation treatment. I have been given false hope too many times. I am totally stressed out waiting for treatment that I now feel about having nothing at all. I just want to get on with my life and can't take much more. Hospital told me to put in a complaint as I was told that I would get treatment next week and now it is going to be a further month. The NHS is crumbling... Hope you get sorted soon. Susan


#13

Have a look at my page to see the problems I have had.
Found out the hard way that to see the top consultant I had to pay fpr a private consult. Best £180 I spent as he sorted out my Epilepsy meds and then I saw him at appointments not a junior doctor for further treatment.
Still had to wait for Gamma Knife though unless I had £5k for private!


#14

Hi Kevin, just seen your comment about having GK done privately. Is the £5k a generalised figure. Am interested because my GK op was cancelled due to lack of funding! Like many I should imagine. Have thought about paying for it private. Hope all is well at your end.


#15

Just had a look online and found a figure of £17k ! If I were you I would ask my GP about a refferal.When I had mine in 2002 there was only 2 Gamma Knife hospitals here, Hallamshire in Sheffield NHS and Cromwell in London now there is one in Bristol so you could find the best if you go private?
Good luck!


#16

Hi KaynGaz,

I'm sorry to hear that you feel that the NHS is failing you. Unfortunatly AVMS are very complicated and due to a lack of research and understanding in this country it is very difficult for physicians and I do emphasis with them. It took 9 years for my AVM to be treated and for the firts 6 it was undiagnosed as doctors were unsure of what it was. There are a limited number of specialised doctors who deal with avms in this country and I guess as each patient is different the best course of treatment is variable for everyone. What unconsented questionable treatment have you had? Are you looking to sue then NHS as in taking it further? I do understand your frustrations, however feel that people that sue the NHS are actually removing money from the NHS pot that should be being spent on research and treatment and is a waste of valuable nhs money? I hope that you do receive the treatment that you need. What is your local NHS trust?


#17

Iv had alot of trouble also. Iv actually gone to solicitors as im having so much trouble.


#18

Hi everyone,

For all those that have had issues with the NHS.

Go for the jugular.

After years waiting for a diagnosis I got the news.
The surgeon I eventually got to see gave me 0 information other than the fact that I would been treated by some guy in Sheffield.
He point blank refused to answer questions about my symptoms and palmed me off saying there was nothing they could do about them.
After treatment in Sheffield (wonderful crown up there) I was rejected by my GP saying he didn't know anything about it so would just write my prescriptions and that's the end of that.
A neurologist I saw told me they weren't rare, I was at no more risk of dying than anyone else in the room and I just needed epilepsy medication (not entirely sure he knew what one was).
After being ignored, shoved under the carpet and brushed aside for 3 years I wrote 1 letter out. i detailed every appointment, every symptom, every step as good as I could recall and sent the same letter to everyone possible including the ESA and DWP who were on my back about me being unable to work (esp as the doctors "reports" stated there was nothing wrong with me).
I included all the incompetence, rudeness, medical ignorance and named and shamed everyone from the GP's receptionists to the conflicting information from consultants and I also put a list and stated clearly that everyone on the list of recipients received the same letter.
Within a month or so I had an appointment with a registrar who openly admitted that I had been badly let down by the medical side and I have just finished a long line of tests on my brain around the site of my AVM.
Permanent brain damage caused by the symptoms they refused to even talk to me about explains all my difficulties in being unable to carry out a normal daily routine, I'll never be able to return to my carer or even work an average job but I'll be able to have the therapy which will improve it to the point where I'll be able to live independently of carers and social workers.
Even this therapy I have to fight for though as it's not available in my area (Torfaen) don't I wish I lived 20 mins down the M4 in Cardiff where it's freely available?
I can't undo the damage that's been caused, I can only hope the GK treatment works and I can pray I'll be able to look after my children alone one day.
I can guarantee though that other people can take the fight I've fought over the last 3 years and jump straight to putting the pressure on the powers that be. They really can do something for you when it comes to dented pride and cross department pressure.
You CAN get the treatment you need no matter where you live and when you start shouting they listen.
Write the letter and spam that letter to as many people as you can.
I'm not interested in suing an NHS system already buckling under the strain but rarity does not mean we have any less rights to treatment than anyone with a common cold.
Just one letter and a lot of stamps.

I hope we can get one and the same letter one day that we can flood every government/hospital office with demanding that they sit up and realise that OUR LIVES deserve as much consideration as the next.

Make waves, and make them huge crashing ones. Good luck and stay well x x x


#19

Hi, I have been also been diagnosed with AVM on the left hand side of brain but as it is 4.5 cm we are in the process of been advised for steroatactic radiosurgical treatment to start with, please let me know how long ago you have been diagnosed and how are you coping, I was diagnosed back in February this year and I am very ansious


#20

My Daughter was treated by Anil Gholkar (embolizations) twelve times and Professor David Mendelow (craniotomy) both from Newcastle RVI and she is now an AVM survivor symptom free …they are both wonderful surgeons