Not happy with my consultant

Member

hi. hows every1 feeling? my headaches are easing a bit as of the nicer weather comming in [You must be registered and logged in to see this image.]

Well yesterday i received a letter from my consultant as apparently i missed an appointment to see her. it was the first time i heard about it. The letter i received was for my GP.

In it it says all of the basic stuff about iih and that i have had a LP shunt done and is getting a VP shunt done soon.

| have been traveling 2 hours each way every time i go an see my consultant as i have been told there is definitely no drs at my local hospital. I have also got to pass through an area where i am not supposed to be. I was removed from that area for my own safety by social workers and police a few years ago.

Well anyways in this letter it states that i am not happy with having to go to the other hospital and my consultants tell my gp there is a consultant who is willing to see me at my local hospital [You must be registered and logged in to see this image.] so basically i have put my little girl and myself at risk going to the other hospital and all the drs etc in my care knows why i shouldn't be there and they have even been told by police i should not be there, but they have still made me risk my family when there has been a dr 5mins away from me. its is literlally 5 minutes walk from my front door to the hospital.

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Admin1

Hi Jean,

my advise is to go and see your GP and take your letter. If you can go with your partner as well, and explain the situation again to him/her, and tell him that you were extremely upset when you received this letter, especially as even the police have explained your situation, and ask him why when there is a Consultant who is willing and able to see you at your local hospital, have you had to put yourself and your family in immediate danger.

Tell him how the extra distress and worry has affected you mentally and physically. Make sure he realises the seriousness of this situation. Also ask him to make sure it is visible in your notes that you cannot attend that hospital or be in that area at all

I'd also contact your local police, and ask them if they could write to your GP explaining that you are not allowed to be in that area under any circumanstances.

If you don't get any help there then I'd contact your local MP. Let me know how you get on.

Guest

Hello Jean,

I just want to share sympathy to you. To be quite honest, I am not familiar with the medical system in UK since here in Saudi Arabia we don’t have GP’s but we have lots of specialists. But from reading your post I would recommend that you should talk to your GP and seek proper referral to a competent clinic and facility which will both secure your appointment and safety since I believe your GP has the say when it comes to competent referrals. That distance is quite a long haul and I guess there are available doctors much nearby and also as skilled as the ones that treated you before.

I wish you could resolve that concern soon and all would be well with you and your routine check-ups. My thoughts and prayers are always with you.

Saleh

Member

[You must be registered and logged in to see this image.] Whats the latest Jean?
Have you seen your GP as Heidi and Saleh said?

Member

I have seen him and he is surprised as me. he advised me to make a complaint as he was to trying to get a consultant to see me at my local hospital. he never knew there was one at my local. Apparently hes based at the other hospital but comes to my area every day [You must be registered and logged in to see this image.] that is what the other consultant said.

Guest

Hi Jean,

We all hope that all would be well and soon you will find a doctor who is versed in IIH to see you regularly in your local hospital. Things would be fine in the future for sure also we are always here for you anytime. Wish you all the best.

Saleh

Admin1

Jean it's reassuring for you to know that your GP supports you, and is aware of the lack of relevant information been given to him. This could have been so much better had the necessary people been more communicative and forthcoming. I'm glad he's advised you to make a complaint, and I would indeed go ahead and make one, as the consequences of you been forced to go to an area you shouldn't be in, could have lead to something more serious than your IIH.

It really needs to be addressed to stop it happening again, if not to you but to someone else. Let me know what you decide. You could also contact PALS based at the hospital you were treated at too, and they can help you with it. To find the one in your area click on the PALS banner on the homepage and from there you should be able to find the one nearest to you.

Member

HI
thanks for the reply's, my gp has arranged someone from pals to come out to see me, since i have spoken to my gp. the consultant that i used to see has refused to even talk to me let alone see me and my surgeon is not going to do my vp shunt in June as apparently they dont have to as i have places a complaint in (which i have not yet i am waiting for pals to get in touch with me), so im hoping my local hospital consultant will be able to see me very soon as my pap is extremely bad and im on the verge of blindness again, i am so fed up,

Admin1

I'm pleased that your GP arranged for someone from PALs to visit you, but I'm horrified that your Consultant is refusing to see you, and that the surgeon is refusing to do your VP shunt because you have asked to see someone from PALS. The fact that these actions totally jeapordise your health and can lead to serious repurcussions in terms of your sight and overall health, is not acceptable AT ALL! If this is the case then he should be telling you who is treating you instead.[You must be registered and logged in to see this image.]

If you have it in writing that the consultant is refusing to see you, and that the surgeon wont do the shunt because you have made a complaint, then you must get it in writing. The reason being that it is not only proof but also, if they continue along this line with you, can help you in terms of going down a legal route if you have too.

Have you informed your GP of this or is it him that has told you? YOu must get in touch with PALS and tell them what is happening and what you have been told, and tell them you need to see someone immediately.

I am absolutely furious for you, and wish I had been well enough to see this post sooner. You have a right to be treated and to be seen, and refusing to do either when you have a neurological illness that can threaten your sight, is nothing short of medical negligence!

I've found this link that might help tyou. It tells you all about your rights as an NHS patient. NHS Patients Rights

Member

hi yeah i have it in writing, pals is advising to get a solicitor as i went to see my gp and there is more bleeds on my optic nerve and he is very concerned about my sight. It was my gp who give me the letters from my ex consultant and ex surgeon the reasons giving is that as i made the complaint they are not obliged to do the operation and is allowed to cease treatment [You must be registered and logged in to see this image.].
I have seen a nice lady from PALS and they advise getting a solicitor as it is not right and i should be getting medical treatment as its urgent. The other consultant is going to treat me but the waiting list is 3months min as he is fully booked and had to push me in. my gp and pals are trying to get me in sooner even if it is with 1 of his junior team. To make matters worse i have just found out im pregnant with the implant in [You must be registered and logged in to see this image.] so my gp has suggested stopping my topamax to help the baby,[You must be registered and logged in to see this image.]

Admin1

I'm so glad you're getting the support and help you need from PALS and your GP. They are right to tell you to get legal advice, as making a complaint is not a reason to discontinue valuable treatment, especially as the complaint isn't even about them! The hospital itself can be held accountable for this too, and the legal repurcussions are great for them.

I do hope that this gets sorted for you soon, and before your eyesight and health deteriorate further. Congratulations too on the pregnancy. [You must be registered and logged in to see this image.] It's even more important now for them to be treating you and sorting out your ICP, we're with you 100%.

Member

UPDATE

I have been on the phone to a solicitor as i was having a LP and he thinks there is a strong case against the other hospital. Also my GP has advised to terminate the pregnancy as the pressure is rising and my pap is getting worse. I have been to my local hospital for a LP and it over 70 so me and my partner needs to have serious think about what we want as i really don't want to lose my sight. and the eye dr that i have seen has said its the worst pap he has ever seen

Guest

Praying for you and all the difficult decisions before you!

Hoping for the best for you, and your partner, and your daughter, too. Worst pap must be soooo hard!

It is unfortunate that here is my husband and I who probably will never
have children of our own. I will pray that you and your partner are able
to make the best decision regarding whether or not to terminate your
pregnancy. Please do not take the following as being defensive - the
reality is that when a pregnancy is terminated, there are life long
consequences which the mom and dad may feel the rest of their lives. So,
my husband and I will pray that this matter will stand in God's loving
hands! Whenever we see or hear of others pregnant, we know we need to
pray for the good and health of all. Perhaps by some miracle, the pap
will improve.

VIP Member

I guess you need to take your GP's advise seriously. Discuss it carefully with your partner and family members. Weigh all the risk at hand should you decide to keep this pregnancy. Your GP will not recommend such unless they have carefully evaluated your condition. It may be blunt and emotionally painful but it's your health that has to be held at premium. More over if you decide to keep the pregnancy it would both have adverse impact on you and the baby. Allowing this pregnancy to term may also mean lost of your sight at the same time a great possibility of the baby having problems at birth. Though you would think of giving this life a shot, also bear in mind the possibility of not seeing your other baby grow with your eyes. It's a tough trade off. It's a dilemma but at this moment of pregnancy, you are the most significant of all in making choices.

We pray for enlightenment in your decision as a couple on this matter.
______
Reference:
Koontz WL, Herbert WNP, Cefalo RC. Pseudotumor cerebri in pregnancy. Obstet Gynecol. 1983;62:324-327
Web Reference [Medscape]

Guest

Yes, sometimes I have a hard time putting thoughts in words. Definitely, Macario! It's a hard thing to put in words, and know we love you, although we may have never met you! God loves you, too as a family, right where you are, in the midst of this struggle. I will ask for others to pray for you as well! Keep us posted!

Admin1

Jean I am so sorry that you are in this position, and such a hard and heartbreaking one for you and your partner. My thoughts and best wishes are with you no matter what difficult decision you make. Either way it's going to be hard as it's a case of the maternal over the logical and practical. I understand why your GP has suggested termination, and I have to agree with Macario.

I do have to point out though, that if your medical care had been better, and your papilloedema taken care of and stabilised, there would have been a minimum risk to your eyes while pregnant, so I would indeed mention this to your solicitor. As the way it stands you have been put at more risk with the doctors failure to stabilise the CSF.

Member

Jean, I am so sorry to hear this update. It is such a difficult time for you and your partner, you have life changing decisions to make that effect everyone. Only words I can offer is do not leave any stone unturned, talk to an obstetrician and your neurologist and any other professional help you can get so that you can make an informed choice based on fact and not emotion. Though emotion is a huge part in your decision I hope that you will find the peace of mind you need to clear your head and make your choice. Please also try get some counselling for this, you should not be facing it without it.

My thoughts are with you x

Guest

Hearing your difficulty with the health care system I cannot even fathom, yet is it possible for you to get another opinion? We are praying for you!

Member

Hi

i have had a busy few days talking through with other health professionals.

All but 1 think it is best to have a termination. the gp has other reasons such as when i was pregnant with cloe the weight of the baby was causing m pelvis (symphisis pubis dysfunction) to tip so i is and out of hospital through the pain and i was in a wheelchair by 30weeks as i could not walk anywhere my GP is worried about the symphisis pubis dysfunction and also that i have had really bad post natal depression in the past. The only one that thinks it should be ok is the Obstetrician but he has admited he does not know anything about iih.

I have seen my new consultant at my local hospital and he has said he is limited to what he can do, due to the fact i am pregnant.

we want the baby so much but like heidi has said it is maternal over the logical and we can not risk me losing my sight and not seeing my children grow up and seeing them get married etc. It is a very hard desicion to make to terminate but we can not risk carrying on with it. My GP has said that i can go on and have another baby with careful planning when the pressure has gone down a bit and is under control.

I am so sorry to the people who can not have children i feel guilty doing this for them people who really want a baby and cant have them. (i must say i really do want this baby and it is going against what i really want).

I will leave the site if anyone is upset about my decision but i really need to concentrate on the baby i have got who is Cloe i want to see her get married and see her children not just hear about them.

jean

Admin1

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Jean sweetie, there is no reason at all why you should leave this group, especially as we are here to support you, now more than ever. Your decision must have been the most heartbreaking and difficult one for both you and your partner to make, heartwrenching so, because you and your partner really want this baby.

As you're being advised by doctors that this is what is best for you and your baby in the long run, medical has indeed out done the maternal instinct, and left you with little choice. So I know you go into this with a very heavy heart, and will need our support and understanding to help you overcome this.

I'm sure other members reading your posts, have felt for you every step of the way, and realise it could very easily be them in this position. No one in this forum or outside of it, should judge you on a decision that is out of your hands, and that in the long run you, your partner and doctors are being practical in the terms of your health and your babys health. Who among us would not make the same choice under the circumstances you are facing. I think you are very brave Jean, and we will do our very best to see you through this over the coming months. [You must be registered and logged in to see this image.]

Member

HI thanks for the reply heidi. It was the hardest decision that i have ever had to make.

Guest

Hello Jean,

I guess you have made the right choice. For me it’s always your health that needs to be put ahead of everything. Through this decision you are saving your vision and giving yourself and opportunity to watch Cloe grow. It may be tough but you should be consoled that a lot of people who care for you will choose your health over anything else.

You made the right choice; I pray for your good health. There is nothing to feel odd on this decision. In life we decide on things that at first we feel difficult but as we go through we realize that we are indeed right.

Saleh [You must be registered and logged in to see this image.]

Member

Jean

So sorry you had to make a decision like this in the first place, its not something that anyone would like to be faced with, particularly in this day and age where you would think that the world of medicine could protect you from having to make choices that break your heart. But at the end of the day you did not have any other option, you have Cloe and her future to think of. She needs her mum looking after her and loving her. She a lucky little girl to have a mum who cares so much for her. Your condition in your previous pregnancy would not help at all, that alone makes having another baby a difficult decision never mind coupling it with IIH.

But please do not worry about what other people think, they are not in your situation and therefore can never fully understand the seriousness of the decision you had to make or the fact that you really had no choice at all. You are doing the right thing for you and your family for all of the right reasons and that is the most important thing of all.

The next few weeks are not going to be easy for you but everyone here is here to support you when you need it, listen to you when you feel like talking, and cry with you when you feel like crying. Don't be afraid to use those resources.

Take care of you and Cloe and keep us posted.

Geri

hugs 2

Guest

I am in and out of the website, so that's why I have just caught up on what has been happening, Jean. There have been many people praying for you, and will continue to pray for you. No one judges you. I want you do know that! All we have is love and compassion.

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