Does anyone else feel anger/resentment at the NHS

[rachelk]

I am currently in the 'recovery phase' of PNI - which started in Nov 07. I feel like I am starting to feel much better and am going back to work in a couple of weeks (son is 7 months old).

I just wanted to ask if anyone else has strong feelings of resentment/anger at the NHS/system as a whole. I feel like I am so angry at how badly I have been treated and feel that these emotions are wasted energy - but they are eating me up!

Briefly, I had my son in August and all went really well. However, by month 3, I was starting to get more and more down, not sleeping, crying all time and feeling generally that life was a bit of a waste of time. My HV came in Nov (month 3) to do that PNI test and I scored highly. She suggested that I might be depressed and should see doctor. She was right and I went into serious decline with much of Dec and Jan spent trying to stop myself leaving or killing myself.

The thing that upsets me though is that she did that test in month 3, and I haven't seen her since. I haven't been to clinic to get son weighed (can't face it) and haven't been contacted proactively by her. I saw her for first time this week at Month 7 check-up. She asked how I was and I replied - "Let's just say it's been a rocky road"! ....she just carried on with checking son!

I have coped due to family and this website. But what reflection is that of NHS, and why bother with that stupid test if they aren't going to follow-up with checks.

Anyway, I need to get over my anger and frustration. Just wondered if anyone had any similar feelings or any advice.

x

[cokey]

Hi Rachel

I don't really feel anger, just no surprise. I had this happen both times with me. Last time, my HV never did the questionnaire and asked me how I was and I said low but coping and she went away without delving further. I was in fact crying out for help but she just took it as I was coping. She didn't ask me a single question and like you she just checked my son instead of asking what I meant about being low.

This time my HV changed and the first one was good but the new one didn't even ask me how I was. I would have thought with my history they would check.

Also when i first got pregnant with my dd, they said they would keep an eye on the PNI but not once have I ever been asked how I am, not by one person.

If you want NHS help, I feel you have to go get it and we all know just how hard that is.

I am not angry but sometimes I get frustrated because having PNI can be dangerous in extreme forms and yet it isn't greatly acknowledged. yet if we had another debiltating 'physical' disease we could tell the world, get support, help and sympathy.

The problem is further fuelled I think by the fact, especially in my case, that once you are well it is hard to kepping talking about it. Veritee is very brave and very good to have done all this work after the event because I have found it personally difficult to discuss it once well because I am scared it will relight some flickering flame and make me ill again.

Cokey xxx

[rachelk]

Cokey,
That is really interesting and good to know. I agree that it isn't a surprise, but it is just not good enough, especially as you say PNI can be so dangerous. There are a group of mums who had kids at the same time as me (they don't know I have PNI) and they go to the clinic every week religiously. They have had home visits to discuss weaning etc. because they are keen/visible/easy for HV to deal with. I have never had home visit or any discussion of weaning. This is wrong as it is people like me who she should be keeping an eye on/concerned about.

Just wish they knew how we feel.

Rachel
x

[littlelotty]

Hi Rachel

I am sorry you have had a rough deal with your health visitor. I didn't see my health visitor unless I went to clinic which I didn't as I worked. I am now seeing her after I took an overdose and finally got diagnosed with PNI five weeks ago and my LO is 18 months. The health visitor is very supportive. I know from being a social worker that the health vistor's have been cut back so much and there is not enough time or staff to do the things they used - this is not I think the HV fault but down to the government for cutting so much of there services back. I think if anything you could write a letter to your local MP about your experience and how the health service needs to improve - that will get it off your chest!!!

I do not think you are alone but as with every service it does depend on the individual health visitor as there are some great ones but then there are ones that do bear minimum so if you are not happy then you can ask to change you HV.

Take Care

LittleLotty
xx

[rachelk]

Thanks Littlelotty,
It is good to hear things from the perspective of the health service as I know there has been cuts. My husband is a physio and he says it is horrendous. I guess, looking back, I hid a lot of what I felt from people, so how can they guess unless yu give them some clues.

I think just talking about it/airing my views is already helping me put my thoughts into perspective.

Thanks and I hope you are OK now. Did you have symptoms of PHI between your LO being born and being diagnosed 5 weeks ago? Or did things start to emerge much later in their life?

Anyway, best of luck.

Rachel
x

[littlelotty]

Hi Rachel

Looking back now it probably started near the end of the pregnancy!! I could not bond with my LO and I just felt so down and trapped and like I couldn't breath. I would get really stressed that my whole life had changed and I couldn't do all the things I could before I had my LO. We had a lot going on after my LO was born - christening, wedding - we then broke up and then have recently just got back together again so it has been a rollercoaster!

Like you when I did see the health visitor in the early days I said everything was fine and they would never of guessed and then I went back to work and I didn't see her. I have had many strange thoughts - thinking my LO is going to die and being really worried when she is ill and not believing what the doctors say etc.

Now I have been on the meds it feels like I have just woken up from a coma and I wished I saw that I was suffering from this awful illness. Everyone around me said I was depressed for the past year in fact but I would not accept it and have pushed them all away including my hubby by me leaving. As I said I think I was a failure as a mother and my thoughts I was having towards my LO were worrying me and as I said being a social worker in childcare meant that it was even harder for me as I was worried they might take me off her and think I am a bad mum. They have all been very good though since they now know although I am still off work.

I am glad that airing your views is helping - I have found this site has helped me over the past 6 weeks and I don't know what I would of done without it - to know there are other women who feel the same and you are not a bad mother is good to know.

Take Care

LittleLotty
xx

[Veritee]

Hi Rachel

Yes I felt both anger and resentment toward the NHS, maternity services, my HV, especially my Health Visitor and later social services.

Some of this I wrote down for my story in the book I contributed to ' Surviving Post Natal Depression By Cara Aiken, Publishers Jessica Kingsley ISBN: 1853028614 '

But at the time I wrote my story for this book I was not 'brave' enough to express the full amount of my anger and disgust about how I had been treated - a distressed new mum who needed help and understanding and not unhelpful assumptions and judgment -

Since then I have told more of my story on here - and it truly was appalling and have further used my story to try to 'educate' my local services about what can go wrong ..............

how just one or two 'throw away' comments by 'professionals when you are in a vulnerable situation such as childbirth and /or when you are struggling with PNI - can affect you profoundly and be experienced as trauma and take years to get over and how your distress signals being 'missed' or misinterpreted by key professionals, can prolong your suffering unnecessarily.

Or as in my case - make it much worse!!


Briefly my story is that I and my baby nearly died due to assumptions and lack of care during the birth in the hospital they took action when it was nearly too late for us both, despite my telling them for hours that I was in an emergency situation........they did not listen to me, essential to be listened to when in childbirth as really you do know best your own body

.............. then after birth my child, who was born very small anyway, failed to thrive and the health visitor 'decided' despite my saying that I felt I had PND/PNI that I was not ill -

but was an 'inadequate' mother and that my baby was not putting on weight as she should, this must be due to my inadequate care - she had no evidence of this, and it eventually proved to be due to a health problem - it was just an assumption based basically on my lifestyle and appearance being completely at 'odds to hers -

Despite starting this service, I was not actually diagnosed as having PNI/PND because my difficulties were put down to my being somehow 'inadequate' not ill - this was despite my actually working at the time as a professional youth worker and being a very good and efficient one and totally able to look after my own baby -

but I DID have PNI!! Something that was never recognized or accepted by this HV....................

..............then because my HV felt I was not ill and my daughter not unwell too, which was the case..............but an 'inadequate or even abusive mum who was causing my daughters problems with weight somehow ( although she could not explain why this could be so)

We were referred by her to social services . Who only got involved due to the unhelpful and wrong assumptions and prejudice by my first HV and should not have been involved with our lives .......... and led to my and my family suffering much disstress....

On the whole I can say that when I had my baby in the hospital until about 2 years afterward every intervention of any service in my case was not only unhelpful but in fact damaging ........... ( except my second HV who was great) and a lot of that was due to individuals, thoughtlessness comments and not picking up the degree of my distress or if they did making unhelpful assumptions.

So what is being said on this thread I could have said a lot of it myself years ago.

My 'baby' is now 18 nearly 19.

However I did find that it helped me a lot to be proactive about my situation.

One of the first things I did was request a change of HV - and while I had to have a HV slightly outside my area so this meant longer traveling for her when she visited me and me if I visited here - the one I was allocated I have NOTHING but praise for .

She was totally marvelous and her input did much to mend the damage that the previous one had made -

If you are not happy with anyone it can often be a good move to request a change. It may be difficult and they may say there is no other HV, GP etc you can see - but if you insist they have to allocate someone you will find more suitable for you.

I also requested that I saw my notes - from the hospital i.e the complete notes not just the ones they show you, from my GP, from my HV and Social Services.
It really helped me to understand how they were seeing the situation and to make sense of it all.

In your case maybe just to see your HV and/or GPs notes would help?

I also got myself a counselor so I could talk through with here, in complete confidentiality, how I perceived what had happened to me , my anger etc and work out what to do and how to handle it and come to terms with it all.

The reason I got the counselor was because as you said, for me too
' these emotions are wasted energy - but they are eating me up'


This was very true for me too ................so I dealt with this anger with counseling and then tried to use my experience to assist others - by making official complaints and even this forum is part of this

The other thing I did was made 'official' complaints to both the maternity services and social services.

This may not be something you want to do - and often is not a good idea if and when your pain and anger is raw - as doing a complaint can bring up feelings you find it hard to cope with without much support and counseling.

I was only able to do theses complaints sometimes later - cant remember how long it was now, might even have been much longer that 2 years - and with the help of my counselor who came to meetings with the NHS and the Social Services to support me through it all.

My complaints were upheld and I got apologies from both and a promise from both that they would try to learn from what happened to me - not sure if they ever did but it helped me to hear this.


However I am not saying at all that all services and/or individual professionals are in general lacking.

I do hear from many who are absolutely and totally happy with the services they have received, NHS - HV, GP, mental health team, CPN and social services/social care.And feel that they were key in their recovery from PNI and got them through.

But it has to be said that not all feel this way

My experience was many years ago and I am assured things have changed ( well they say here in Cornwall anyway ) - however I still hear from those all the time who are not happy currently from all parts of the UK

- and there is always room for improvement and services can always learn from feedback from service users.

I feel it is only if we speak out about how it was for us - that things change.

However I am not suggesting you do this i.e actually tell the service itself how you feel about their intervention....
unless you feel strong enough and have support to do this.

It can be constructive for both - but it is probably best to change the HV - or anyone else - who you feel was lacking in their attitude or care before you make that complaint!!

But do not even think of taking it to the service involved until if and when you feel strong enough to face it - as the process can be very upsetting.

Veritee
XX

[rachelk]

Veritee,
Thanks so much for that. I agree with so much of what you said. I have just bought the book you contributed to and am taking it on holiday next week!

I am also (at last) seeing a counsellor who I hope will help ease my anger. I see her on 18 April (not long).

I am also determined to make some good out of this, just like you have, and want to try and help others in this situation. Once I feel a bit stronger I am going to enquire about voluntary work and hope to be able to offer support to others...there has to be something good to come out of all this!

I have offered to be an e-mail buddy for this site, and anything else which may help, I would be willing to do. I can honestly, honestly say that this site saved my life! That is not an exaggeration. One night at Xmas, I didn't go to my OH's family do as I felt so run down. He took both kids and I stayed home. I have never told anyone this, but I was determined that night to either leave - didn't care where, just leave, or to kill myself. I sat at the computer in floods of tears and googled PND. This site came up, I read the threads and just bawled and bawled for about 12 hours. I have used it everyday since and am about 95% better. Fantastic. You deserve a medal.

Take care

Rachx

[cokey]

Rachel

It was very brave of you to admit that but you are right about this site and I owe a lot to it both times. I know we shouldn't rely on it but I can't help doing so because no-one understands this illness like fellow sufferers and just as you did, just reading that someone else has felt the same way and survived gives you the tiniest bit if strength you needed to just keep going.

I have read Cara Aiken's book and its so terrible how Veritee was treated, just appalling.

She survived it and through that experience she has helped so many women.

<My little boy just walked in dressed as Spiderman. Even though I am having another rubbish day, moments like that are just the best aren't they>.

Take care

Cokey xxx

[Veritee]

Thanks to both of you for the feedback that this forum is worth it and is useful to people. All who run it now will be pleased to hear this.

It is that which makes it worth while.... and we need to hear it at times.

I did not start it for this - when I started it I had no idea if it would be useful to anyone really .............. I started it because when I was going through that awful few years and all that happened, I felt so very alone with it

- I love my husband but even he could not help me very much with it as for him it was different I guess he did not feel responsible for the situation we found ourselves in.? I did and while in retrospect it was not at all my fault, as all I did and could do was my best and I certainly did this, but at the time I felt it was my fault and without me everyone would be better off - also he was away at sea for a lot of the time .

I just wanted to do something to help others not to feel as alone - I think we all feel alone with this at times, whatever support we have, but I just felt that any effort 'out there' that women with PNI could access may be a help in some way to someone .

I too had times like you describe Rachel, where I felt I was either going to end it all or walk away from my daughter and her dad for good and although it never happened I feel I did get very close to it - especially when all that was going on with the NHS, social services etc. I think what helped me then was my telephone volunteer from the APNI as there was no Internet then -

I think you are very brave to tell us about this now. I think more than is ever realized get to this point and just so wish sufficient services existed, and were effective enough, so that everyone with PNI felt supported and NEVER got to this point

I do think things have moved on in general since my experience, but the services available still do not always work well for everyone - and one woman with PNI who gets that desperate, is one person too many

As soon as the Internet came along I felt that it could be used to connect more women with PNI together in a way that would be helpful, so thats why I started this.

But you may have noticed that I do not post very much anymore so it is not down to me now .

As now this service is run by a group of lovely women who do their up most to carry it on and do so very well.
I see it as a group effort - run by those who have - or are - suffering PNI for those who have or are suffering this.

I do think that with this issue no one knows how it feels as much as those who have been there.

I am so glad Rachel you have some counseling .

I am not saying it is the complete answer and it did not end my anger, I still had many years to come to terms with it fully.

But it helped to explore how I felt and to find a way though with someone who did not judge me. As the anger I felt about how those who were supposed to help me let me down so badly, was the worst thing really that I had to deal with.

What my counselor did was to help me to try to turn my anger into something constructive i.e use the anger to turn it outward instead of inward and do something that might help.

Veritee XX

[Scarlet]

Hi Rachel,

Sorry I can't contribute anything to your thread, as I live abroad, but I just wanted to say I am so pleased to hear you are well on the road to recovery hun.

You'll make a great email support as well, that's great, thank you for that... I'm sure we'll find you some ladies to support
xxxxx

[rachelk]

Thanks Scarlet,
Just noted your signature...'mum to two beautiful boys and recovered from PNI'....I am a mum to two beautiful boys and can't wait to be able to add the last bit!!! Maybe not long now.

Rachx

[Scarlet not logged]

Sure won't hun

xx

[Scarlet]

oops meant to say... it sure won't be (too many vinos tonight)

xxx