Yesterday I wrote a post called NICU Mums and a Lack of Empathy, talking about how I felt society was becoming less empathetic. In doing so I addressed the experiences that myself and many pregnant women have had. It came to light that the neglect and poor treatment is far more widespread than I had even realised as I received comments on Twitter, Facebook, and the post itself sharing other equally disturbing stories. The final comment from Niki, who writes an incredibly moving blog dealing with the loss of her son, Missing Harry rightly said that women should complain as it's the only way things will change. Indeed she intends to do so as she has again experienced appalling attitudes and incompetence in her current pregnancy.
So today I thought I'd follow up with how to complain.
There are a number of routes and points of contact, depending on the circumstance and geographical location. I will try and give a brief overview and provide the necessary links. This will of course deal specifically with the NHS and so won't be applicable in practice for private patients or those in other countries. Hopefully people outside of the UK will have access to alternative sources of information and advice.
According to the NHS website complaints page you can complain directly to the service or to the local primary care trust PCT. It would probably be wise to do both. Complaints should ordinarily be made within 12 months, however, extensions can sometimes be allowed if the complainant is suffering 'grief or trauma' and is therefore unable to do so. A diagnosis of Post Traumatic Stress Disorder, Post Natal Depression, Ante Natal Depression, or other anxiety disorders should count as a mitigating circumstance for having missed the 12 month mark.
PTSD in particular results when someone fails to process painful or dangerous experiences as they occur. Therefore there will be an often significant delay in getting a diagnosis in order to get treatment and eventually have the mental capacity and strength to make the complaint. Equally, depressive illnesses, especially if caused in part by the service provider will have affected your ability to kick start the complaints process and so you should find that your complaint is still heard. If not, there are other routes to try and correct this.
Parliamentary and Health Service Ombudsman
If you have received no satisfaction in your complaints directly to the service provider and PCT, then the ombudsman is an independent body who can be contacted on 0345 015 4033
Patient Advice and Liaison Service
Part of the NHS, PALS can provide information and help put you in touch with other organisations that can provide support in making your complaint. Follow this link to find your local PALS.
Independent Complaints Advocacy Service
ICAS is a national service that supports people who wish to make a complaint about their NHS care or treatment and can be contacted through the hospital manager, PALS, or directly via your regional office.
The Citizens Advice Bureau might also be worth chatting to.
This page (NHS: Complaints procedures and contacts) provided much of the information contained in this post and provides further links.
A final word on feeling guilt for standing up for yourself after having a baby born very ill, weak, early, or tragically losing your precious child. Don't! I felt this and didn't think it mattered what had happened to me. Of course this was part of the effect of the PTSD. When you are not the one who is in the most danger - when it is someone you care for - the tucking away into a box seems like the right thing to do. It's automatic - you don't even think. It is a natural reaction but also unfortunately usually why the PTSD occurs. Once you are healed and in a place where you are no longer reliving the painful past and stuck in your head (sufferers will hopefully know what I mean by this) you can look to put right what went wrong. It's not being selfish, it's getting retribution for what happened to you and potentially preventing the same from happening to another.
I took the initial steps but didn't follow through as I tried to do so before I was ready. I feel pretty bad about not completing the process and I hate to think that it may have happened to others in the same labour ward. More guilt.
My daughter is now 3 and I was diagnosed with PTSD when she was 17 months, so it is unfortunately too late for me. It is not for those who have recently experienced negligence or mistreatment, or have just come through treatment for PTSD, anxiety disorders or postnatal depression.
We women do deserve better that what we are getting. But as with everything else, it won't happen unless we make it.