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Need your Help and Advice

Hi all my name is Paul I hope someone may be able to give some advice or help/ point me in the right direction for my daughter.

I am sorry this is a long story but will try and make it as short as possible. My daughter Sacha whom is 20 this year has been suffering with chronic pain for the past six years but regardless of the many doctors and hospital visits she and us the parents where told she had bad migraines and that there was nothing that could really be done other than resting and taking over the counter medication.

Approximately four years ago Sacha could not cope with the pain and started to self-harm and did try to end it all but with counselling came out the other end luckily, regardless of this still had the constant flair up of pain which could last anything up to six weeks at a time but this was just put down to bad migraines. Over the past six years Sacha has been on numerous medications and injections none of which seem to help with her pain, she has had in total 4 cat scans which all have shown to be normal, the doctors just looked and said there is nothing they can do and it is something she would have to get on and live with.

Present day, since January 2018 Sacha has been in constant pain, yes constant with no let up some days worse than others but no matter what doctors or hospital appointments we had Sacha was given some medication and told to rest but would have to get on with it as there is nothing wrong and nothing they can do.

Eight weeks ago Sacha lost all sight and was completely numb on one side of her body my wife and myself rushed her to Basildon hospital whom thought she was having a stroke but this turned out to not be the case so referred Sacha to Southend hospital for an urgent Eye examination which she had that afternoon and it turned out she had lost all sight but for unknown reasons so Southend hospital arranged for an urgent MRI and an appointment with a neurologist. A few days later and we met with the neurologist whom pointed out to us that Sacha has some white lesions and swelling and said he thought that there was a 95% chance Sacha has MS but would need bloods and a lumber punch to be done but this would take around four to six weeks to get the results as it needed to be cultured in the lab, the neurologist stated that Sacha was over medicating herself to try and control her constant pain but said this would have to stop which she did agree to.

Despite the constant phone calls asking the neurologist if he could try and speed up the lumber punch appointment and if Sacha could take any medication as her pain was starting to increase and as parents we could see that Sacha was going into a dark place again but despite this he said Sacha cannot be on any medication but would try and see if he can speed up the lumber punch appointment.

This brings me to the 2nd August 2018 a day that I will never forget, everything was normal well as normal as can be, all said good night and went to bed. I was awoken by my daughter in the early hours 12:30am telling me that she was sorry but had taken 44 co codamol tablets, we rushed her to our nearest Hospital Basildon A&E and was seen by the nurse and told to keep her awake and wait in the waiting area which was approx two and a half hours until we were seen by a doctor whom then proceeded in getting her the urgent treatment for the overdose and then admitted Sacha to a ward to be monitored overnight, the next day Sacha was moved to a different ward where she stayed until the 21st August when she was discharged awaiting outpatient appointments.

During the 19 days Sacha spent in hospital she underwent further tests, a lumber punch was done for MS which came back clear after five days (still not sure about this as we were told it take 4 to 6 weeks for the test by her MS neurologist) Sacha also had MRI scans done but also with contrast, these scans showed more lesions than the MRI scan she had earlier plus we were told that there is swelling around her pituitary gland which maybe a cyst but despite these findings we were all told they cannot help as it would need a specialist which would be an outpatient appointments.

The bit I cannot get my head around and need your help and advice in how I might be able to help her.

Things have been missed in Sacha’s case I can understand things get missed or not treated correctly, but what I do not understand is:

1: How can a hospital and its doctors discharge a patent with a medical condition pending further outpatient appointments investigation knowing Sacha’s medical history.

2: Despite not feeling well Sacha has lost nearly two stone in weight whilst in hospital due to eating very little, she has no hunger tummy rumbles and says she just does not feel hungry at all but despite this the doctors just said she must try and eat but cannot force her to eat.

3: Sacha has a 19 day record showing fluctuating blood pressure and heart rate but mostly low blood pressure and occasionally feels dizzy and disoriented.

4: MS lumber punch results within 5 days, is this possible

Again I am sorry for such a long post and story but just do not know which way to turn, I feel physically sick and numb but it is not about me it is about trying to help for my daughter Sacha, she cannot understand why even after being given morphine and other cocktails of medication it had no effect on her pain other than make her feel sick, she is confused why the doctors cannot explain to her why she has a mass of white lesions in her head if she does not have MS.

Thank you in advance for any help or advice.

hi paul

sorry that the medical help you sought turned out to be so shabby.

MRI scans need to be read by an expert.

the results are then passed to another expert (neurologist).

so we understand that it takes time but in sacha’s case the amount of time is ridiculous.

the worse thing in my opinion is the toll it is taking on her mental health.

try writing to the hospital’s board of directors, saying how let down you are feeling.

i wish i could help further.

carole x

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Thank you so much, I am wright mails to all i can at the moment as it is not acceptable.

Hello Paul

Your pain and angst over poor Sacha rings out so clearly. I am so sorry for you and the family, it does seem that Sacha has been let down by the doctors supposedly caring for her.

I don’t know the normal length of time for lumbar puncture results to come out, but to be honest, I would have expected a shorter time than the 4 to 6 weeks you were originally told.

Up to 95% of people with MS have positive results from their lumbar puncture. Positive that is for Oligoclonal Bands in their cerebrospinal fluid. But there are other disorders identified by LP.

I think there are other diseases which show lesions in the brain. Hopefully Sacha will continue to see the neurologist and will at some point find out what is causing her distressing symptoms and pain. This could I assume still be MS, or another neurological disorder.

I find it hard to comprehend why a hospital would leave someone in a waiting room for over 2 hours when they’ve taken a potentially lethal dose of co-codamol.

I’m sorry that I don’t have anything very positive to add to your daughter’s situation. I just hope she gets some answers and hopefully some useful treatment very soon.

Sue

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Thank you Sue for your kind support.

I sent of some mails yesterday to PALS, health complaints advocates and my local MP because this is been going on over six years now, it is not fair on Sacha or anybody as no one should have to go though life in constant pain and told to get on with it.

What use was it in sending a mail to my MP, i got a reply from her secretary saying Rebecca has asked me to respond on your behalf saying I would strongly suggest making a formal complaint to Basildon Hospital which i have already done.

i was not asking for her to solve the problems of the world but it would have been nice to first of all get a personal reply from her and secondly maybe look into things for me but i guess that is too much to ask.

I also called up a couple of neurologist and asked about a private consultation but was recommended in trying to get a neurologist from my area that can access the reports and scans as it could take weeks if not months to request the scan and reports from the hospital so will see what i can do today.

Will keep plugging away, thank you all for your love and support it means a lot.

I cannot believe how hard things are in getting help, what is other peoples experiences.

This week has been spent on trying to source a private consultation for Sacha as the first week from being discharged was about calm and making things as normal as possible. On starting in trying to get help this week I am told by professor Hawkes sectary that the best thing to do would be to find a MS neurologist in our area one that can get access to the scans and reports someone whom works at one of the hospitals and also does private consultations as it can take a long time to get to the point in which we are at, this is what i have tried, so I will need to get all reports and MRI scans so that the neurologist can take a look which is right but unfortunately to get hold of this information I need to put in a request for information at two different hospitals which I am told can take anything from 2 to 12 weeks not acceptable far to long as she needs urgent help now.

I called up the Basildon hospitals neurologist sectary and asked if he did private appointments to which I was told he does, great I thought when can I book and appointment for Sacha as he has access to the scans and reports only to be told that Sacha’s case has been referred back to the MS consultant at Southend hospital so will need to talk with them, she did say Dr Gallagher should be able to request the scans and reports and should be able to get them far quicker than i could.

Yesterday on talking with the Southend neurologist sectary she said unfortunately Dr Gallagher does not take private clients and is also on holiday this week but will be back on Monday, on explaining Sacha’s problems and that she needs help now I was told that there is a meting booked for Tuesday between Dr Gallagher and the radiologist and to wait for the outcome before trying to do anything.

I can not belive how people are treated a injured animal would get better treatment. It will be two weeks next Tuesday since Sacha was discharged from hospital and in this time is still in pain as the medication is doing nothing, she is not eating much at all so is still losing weight and is just very confused and depressed by the whole matter.

What i have learned is that something needs to be done about the system and this i will do, people can not just be left to get on with it, this is not a third world country so why are a specialist treating people in such a way. Looking at Sacha’s case it is like something out of a book one which is completely fictional as no one could make it up if they tried.

Has anyone expended the same sort of thing as it is driving me insane and i am the one that is not suffering so good knows what effect it has on you all.