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Dushyant

Dushyant
My brother, the poser

Saturday, August 6, 2011

I am Devaanshi Mehta. I am nearly fifteen years old. I am going to die

Hi Everyone,
Once again I have had a really hard time over the past few days and you must have guessed - It was Northwick Park as usual.
I have been relatively unwell for the last two days. I have been off my food and not really feeling myself. I don't seem to be able to keep anything down. My temperature hit 38.0 which is really quite high so we thought we ought to get it checked out at Northwick Park because I was feeling rubbish. I wasn't too worried and nor were my parents. We decided to check my fbc and crp counts (full blood count and a count to help discover if you are carrying an infection or not) because I had only just been taken off a months load of antibiotics on the Sunday prior. I was feeling unwell and had been sick a lot - I also have lost my appetite and I found this really unusual as I had just finished them a few days ago.
My mum rang the childrens ward in the hospital as we always do because I carry a white card that allows me to go straight to the ward without going through A&E as I am immune surpressed. For some reason beyond my understanding, the doctor on the phone said she would check if I was allowed to go to the ward. I was really upset about this because I felt so unwell and it was so unneccesary. We have  a special cad for a reason The people who make decisions don't even know who I am. Obviously I could catch something potentially dangerous to my health as I am so badly immune surpressed and more so because I was really unwell and that having steroids that dampen immunity anyway. The doctor rang back after a while and said it was fine for me to go to the ward. They should know what the plan is. Imagine if it was a dire emergency.
 Once I got there, the registrar said that Mier, a doctor there, had told her that I had to stay in hospital. I'm on palliative care. Do they not understand that if anything happened, that I want to sleep at home. I didn't mind the medicine or the antibiotics, I just don't like sleeping there at all. All I had been doing was lying in the bed for three hours and I only got one set of observations done. The tv didnt work ... I live literally about 2 mins from the hospital and surely it's better if I go home and watch tv to take my mind of feeling so unwell than stare at the wall being bored and feeling worse. If my mum wasn't there, anything could've happened. I could have passed out or something but no-one would know - we don't see them often at all. My health was not so bad that I could not go home in between antibiotic doses. As it is the nurses only come in to do obs if they are free once in a blue moon. Isn't it much better that I can have more people looking out for anything wrong at home than hoping a nurse comes in once in a blue moon there. I feel so much  more safer at home. Trust me.
My mum spoke to Mier and came back into the room. SHE HAD BEEN CRYING. I don't want my mum to cry. I don't want them to hurt her.It is so unfair.We should be able to put our entire trust into the staff at the hospital however I cannot let anything pass me because I am scared and frightened at how easily things can go wrong.
My mum's friend came with us and she was appalled. She said she felt like crying from the heart. We were very stressed at that moment, especially me.I asked mum to call the palliative care team just in case as I did not feel as though they were treating me with the right level of respect for my feelings. I felt that they were more worried about getting home in the evening than taking care of me. No one was willing to compromise at all. Once mum called palliative care on my behalf explaining the situation, Michelle (palliative care doctor) said it was a perfectly reasonable idea. It could have been sorted out so quickly yet we had to wait four hours fr anything substantial to be done.
Michelle spoke to the doctor who had taken over from Mier. He is called Wolfgang. He took an awfully long time getting to the hospital. At 7:50pm, we were advised that he was on his way He didnt come until 9:15pm. He is truly the unsensitive, heartless, cold man I have ever met. He was going to try and access my portocath (little titanium disk that sits underneath the skin and has a tube to connect to the heart and needs to be accessed by a needle) and ruthlessly said he needed to see before he could stab me. As in access my portocath with a needle. I would have found this very rude anyway however it did not inspire confidence due to the fact that they had already tried to access me three times prior and I was in tears because the pain was so much. I asked him to please not say a word like that as I was in pain and it didnt fill me with confidence. He then got a little stroppy and said ' what can i say then? can i say cold? can i say freeze?' he repeated this and said... ' you see how i said it only nce and youve said it three times' (this was when i asked him not to use the word). I found it very childish and cannot imagine that he should work with children who are vulnerable. It really hurt my feelings.

Michelle saved the day and though they were very clear that they were not happy about it, I was happy to know I could go home after the antibiotics each time.

I think Northwick Park needs to be investigated. I think Panorama should be brought in undercover or a government enquiry into the goings on. These people should not be allowed to do this with anyone.Even when I am no longer here I don't want any other child to suffer.It makes me sad,angry and upset. Noone seems to have any compassion. I would never have expected the behaviour I have seen throughout my time in the hospital by children, never mind grown adults. Wolfgang spoke in a very sarcastic and patronizing way to me. I have no wish to be spoken to so rudely when I feel unwell or even when I feel fine.
If it's not the nurses,it seems the consultants take their place.Maybe they want me dead so they don't have to deal with me anymore. Noone seems to speak to me much anymore anyway.

I am now faced with going in every day at the moment 4 times a day, but at least I don't have to stay there to be let down any further. It upsets me that  no one cares at that hospital.Even if they don't like me they should be proffessional not childish.. No one considers my feeelings . I feel as though noone helps and feels they can treat me like this because they know that sooner rather than later, I will be dead. I get frightened of going to sleep at night also partly because I feel as though their incompetence could kill me.  I know they hate us but the only reason I stay on there is because when I finally go I am with my darling brother and sisters.,I know I will have to suffer for my decision.Thank god Dieudonne is on over the weekend so at least he will be nice to me. The handful of people who are lovely to me in that hospital - Thank you. You keep me going just that little bit more however your collegues tire me out. I'm sorry you have to work with such horid, insensitive people.
I am worried about all the other children who go through the same things I do and their parents cannot even speak english.
Just for five minutes I want all of them to be in my shoes and understand because life,death and terminal illness  means nothing. It's just a job to them a pay packet at the end of the month!

-Devaanshi

26 comments:

Anonymous said...

Hey Devaanshi,
This is outrageous. Its shameful to see a hospital, which is supposed to heal people, is causing you so much anguish. As you point out, it must be worse for people who do not have it in them to see and protest against such treatment. Surely, this issue must be raised to the right authorities. If there is any way we can help, let us know.

Take good care of yourself though.

Anonymous said...

Soooo sorry that you and your Mum have to put up with this kind of treatment. There are people that do care and will help you and your family. Stay strong and positive.

Anonymous said...

Hey I am so sorry you are so sick. I know so many of the nurses in Jack's Place and how good they are. I just wish you well and hope that your experiences get better. Love Anon of Harrow

Devaanshi said...

Unfortunately, I have been going to the hospital for the last decade and have grown to know all the nurses inside and out. I go in every week if not more often without fail and am treated with hostility. Everyone is different however I personally do not believe that pety, playground behavioour with added snidy comments really represents 'how good they are'. I am dying...it comes to no surprise to me anymore because I have accepted it. I have not seen such rudeness, childishness, inconsideration or hurtful behaviour in my own school. You can expect it from children from time to time because they truly don't understand. I can appreciate that, however I would never had expected this behaviour from grown women in a paediatric ward. I have been having platelets at northwick park for the last five years and yet still they forget to order them sometimes. Surely after five years, we should be able to trust nurses however this is now not the case. There are some lovely nurses however these are few and far between and inevitabley, as with a lot of failing organisations, all the efficient ones leave first. Not that I blame them. I am glad they left because they were the nurses who really cared for their patients and deserved more. There are a couple of nurses who may say hi however if I have written on this blog how I am upset about someone saying nasty things or the platelets not being ordered and I have started to bleed, even they stop speaking to me. I find it so unfair and upsetting - I feel like I can express my feelings through my blog best. I would have thought they wanted a professional environment. This is obviously not the case. A lot of nurses who have left Northwick Park were brilliant. Sadly, even they were so dissatisfied by the running of the ward that they felt the need to move on. Some are friends with us and we keep in touch and it is them whom I remember caring for me because they wanted to, not caring for their pay cheque.
I am happy to know your experiences have been so good as I have not yet experienced this amount of fantasticness. This just goes to show that they do have it in them, however just pick and choose on whom they use this behaviour.
Thank you for taking the time to read my blog

Anonymous said...

Go girl ....You are absolutely fantastic. Don't let lesser mortals get you down.
You are far greater a person than they can ever be. Take this thought and enjoy the day.
Bravo for your fighting spirit.

Anonymous said...

You are much better than those 'nurses' especially since you have to cope with all your health issues. They are probably trying to create an issue because they are stuck in a job they are obviously unhappy with and they may have nothing better to do at home. Whatever their reasons, don't let those bitchy 'school girls' get you down. I say school girls because this is playground behaviour and bullying. Chin up and smile. They aren't worth any of your attention.

Anonymous said...

The Matron of ward needs to be reprimanded by her superiors.She must have a line manager of some sort that she is answerable to. This sort of outrageous behavior should be condemned at the highest level.You really should get some legal advice. Surely this cannot be right.
God bless you and your family.Keep strong and do not give up.Our thoughts and prayers are with you.

Bijal said...

hey devanshi don't put label on yourself i mean don't think yu are going to die or yu are pallative care patient. just enjoy every moment of your life and try to be happy smile and just pretend with those nurses as if they are ill which they are that is why they are treating yu like that label them incompetent rather than they labelling you also sometimes action speaks louder than words and i think that is the only language they will understand they might be physically more fit but mentally yu are much wiser than them. take care love bijal

JordanC said...

Hi, just want you to know that i think your so strong, and rise above the scum (so called doctors) that are supposed to be helping. From what you've written i can see your a strong girl, with a mind of a mature woman. Jordan C x

DEVAANSHI said...

Thank You everyone.... Anon. comments too - I find it really helpful that people are able to understand how I feel. I havent had time to really be able to blog but I will surely blog a lot in the next few days as soon as is possible. I just dnt seem to leave the hospital very much at the moment.
Bijal, Thanks. I know you understand. Hopefully we can get a lot sorted soon.
Jordan, im pleased you commented... hopefully as ive met the rest of your family i should meet you soon too. Life is hard and experiences have made me see a different angle of life. I just hope others can see it through my eyes.

Anonymous said...

Hi sorry to here about your illness.

No offence I know its hard especially because you are terminally ill but I just do not think you should be bitching about the people who are keeping you alive everyday. Yes maybe on some days they might be very rude but why dont you put yourself in their shoes for a minute and see how hard it is for them. Imagine treating people like yourself with your attitude all day everyday. Why dont you just concentrate on spending the rest of your time having fun not picking on the negatives of this world especially Northwick Park.

Love you Northwick Park (Inspired young lady who hopes to work there one day as a Paeds oncologist)!!!!!!!!!!!!!!!!!!!!

Anonymous said...
This comment has been removed by a blog administrator.
DEVAANSHI said...

I do believe this is a highly rude comment left about Northwick Park. I am the one who has/and still deals with this illness. I try to live a normal life but where there are some rude and very ignorant people such as yourself, it is hard to deal with mistakes that for some reason seemed to occur only at this hospital. However, with the attitude you have displayed which is pretty childish with vulgar language to myself I hope you get your dream of working there. I am sure you'd fit right in. Best of Luck for the future... though you may need to sort out your vocabulary before using swear words on a chldrens paediatric ward.
Thank you for your comment - it made absolutely no impact on me. I realised a long time ago that there are people in this world who are like yourself and few others I have encountered.I am not sure - you may or may not do well but if your idea of a paeds nurse is going using cyber technology anonymous messages to those you'll be looking after - you may need to rethink what paeds nursing is all about. I find it extremely poor that you seem to feel it important to be so pety with literature online to a child - I feel like I am in a playground. And by the way, if certain nurses put themselves in my shoes for a moment then maybe these issues wouldnt occur. I am fourteen years old, I am dying and cannot walk. I cannot go on buses or trains... I cant go overseas on holiday - But though I have this bad health and physical impairment I would much rather be myself than anything like you. Good Luck for the future. Im sure you'll enjoy working Northwick Park.

Anonymous said...

wow such strong views on the potential paeds oncologist?? Interesting how your blog has brought out how desperately callous the individuals who work or have clearly worked at your local.

I say you have responded in a truly mature manner. Bravo. Lets hope you never encounter such an individual. Hopefully the superiors of the hospital have read her comment to you(A child by the way)and are as ashamed of the light she has portrayed not only herself but the hospital too.

Shobha (paediatrition Lilavati Hospital Mumbai)

Anonymous said...

Shameless comments from the so called "young lady" who clearly loves Northwick Park!
As you can see from the rest of the comments that you have recieved.This woman is in a tiny minority and her views are biased and biggotted.
You as ever have shown so much maturity in your response.
Do not let them bully you in the hospital or on this blog.
Our prayers and thoughts are with you and your family in these trying times. Keep going.

Anonymous said...

Hope you had fun over half term.
Keep your spirits up and take care of your health Devaanshi.
- Seema

Anonymous said...

The potential peaeds oncologist should be struck off. She has no place in a children s hospital if her loyalties are not completely for the children. Shameful woman. Of course she had to write anonymously.No one would associate themselves with her if she had put her name to the rant on here.
Well done you for being so mature!

DEVAANSHI said...

thanks for these comments. I do pity these people who are so narrow minded. I am fortunate enough that I do not care for such comments or people interfering in my life. Thank you

Anonymous said...

you are very special devaanshi.. luv you.. -hiren.

Anonymous said...

you are very special devaanshi.. luv you.. hiren.

Anonymous said...

She flies with the angels....never forgotten gutsy young lady...

Anonymous said...

You were amazingly brave person. Real inspiration. Thank you.

Anonymous said...

Oh this post just breaks my heart. Shame on you Northwick Park Hospital. Vicky matron of Jacks Place you should resign immediately.You are unfit to run a ward

Anonymous said...

This post makes me very sad.Northwick Park Hospital should be ashamed they made your life hell. Vicky matron should resign immediately.Unfit for role springs to mind

Anonymous said...

WHY IS VICKY STILL RUNNING A WARD. HEARTLESS, SHAMELESS ACTS TO A DYING GIRL.

Anonymous said...

I have just come across this blog. I'm shocked as to how the head of a hospital such as Northwick Park allowed the paediatric ward be run so haphazardly! Forgetting to order blood products and a distinct neglect of care is actually a criminal offence. I know your daughter is no longer with us but I would strongly advise you to contact myself or another solicitor in the name of justice, not only for your family but also I'm guessing the hundreds if not thousands of patients who frequent this establishment.
I can only imagine the anguish your daughter felt at these times but everyone I have shown this blog to feels the same way. Vicky ward manager then should have been sacked immediately. Her actions surmount to gross mis-conduct.
Your daughter sounds like an amazing human being and I wish I had had the good fortune to have met her.

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