Gaps in the NHS

So just over two weeks ago, when I was feeling in a very low place, I decided to finally go and see my GP and find out what sorts of bereavement services are available to me. I was wary and anxious about going, as I’ve seen many doctors in many countries since losing Finley, and to be honest, the prospect of explaining my story AGAIN really wasn’t desirable. But I knew I was sinking so I made the appointment, they could actually fit me in the same day.
As a bit of background for those who may not know my story, Finley was born in Italy in an American Naval hospital. My husband is British. I went home to Canada shortly after we lost him. So I’ve seen American doctors, British doctors in Italy, Finley was with Italian doctors in the NICU, I had my 6 week post partum check done in Canada, and now I’m back in the UK. That’s a lot of doctors.
I’ve felt like because we left Italy so quickly with the intention of returning to the UK, we were sort of lost in the ‘system’ so to speak. From what I’ve read on various forums, people in the UK generally get put in contact with a bereavement midwife, their health visitor and they will have a consultant appointment to go over events and discuss care for future pregnancies. If a post mortem was chosen, then they will have a separate appointment for the results of that as well.
We are currently more than 20 weeks past Finley’s death, and I have been advised that I won’t see any results until September or October. I haven’t been able to ask any questions surrounding the birth, Finley’s care, my own care, my hemorrhage, my c section, the surgery I had to stop my hemorrhage – nothing. I know not to expect results from the post mortem, but at the same time, I NEED to be able to ask questions. I’m a person who likes to have knowledge, to be prepared.
I feel like I can’t fully accept what happened until I KNOW what happened.
So this brings me to the point of my appointment with my new GP. I told her I was struggling; she asked what happened. She hasn’t received my medical records yet, and I can only assume this is because they are still analysing everything surrounding the birth.
I understand the necessity of this, but we are nearly 5 months down the line, and it is hard to get any sort of care in an instance where they don’t even have my history and my records.
I also asked about the availability of bereavement counseling. The GP was lovely. She looks young, probably not much older than me, and when I was telling her my story, she looked so sad. Like she might burst into tears at any moment.
Seemingly concerned, she asked me to make an appointment for the following week. She advised that she will spend some time finding out what services are available for me. That she will try and make a start on getting my medical records.
Fast forward a week, and yesterday I found myself back in the surgery to discuss options. She told me that there is a consultant who runs a clinic and meets with people ‘in my position’. She said that I can meet with him on 3rd September to have a meet and greet and have a preliminary discussion. I will then be able to see him again once we have all of the results, notes, etc.
There is also a one off option to meet with a midwife and discuss the birth from a midwifery perspective, ask questions, etc. But the GP said it would be best to wait for this until I have my results.
She then started telling me that the NHS doesn’t actually have a service for bereaved parents. No bereavement counseling. She had researched charities. Apparently the NHS directs parents to Sands. While I love Sands, I sometimes feel like I could benefit from something a bit more regular and structured than a group meeting once a month. There is a helpline you can call to talk, but it isn’t the same as meeting with somebody face to face. I want to work through my anger. I want to work through my grief.
She said she could look at referring me to the mental health team, though there would be a very long wait, and she wasn’t sure how helpful it would be.
So in my opinion, this is a HUGE gap in the services offered to parents of stillborn babies, or those who die shortly after birth.
We need help and support during this time of immense grief. We need somebody to talk to who will listen to the same rants and stories over and over again while we attempt to come to terms with what has happened and what we have lost.
There are lots of private counsellors who specialise in child bereavement, but at £30-40 a session, it would quickly be come a very expensive service to maintain on top of everything else.
About a month ago I was reading an article written by Dr. Alexander Heazell, an NHS doctor after Amanda Holden delivered her stillborn son.
Dr. Heazell is a clinical lecturer and specialist in obstetrics. He has a lot to say on the subject of perinatal loss, including how it is a taboo topic, and how more research needs to be done to prevent these types of deaths. To hear it from a professional who has experienced a similar loss is somewhat refreshing. If only we could have many more professionals on board.

Both professionals and parents can be reluctant to deal with stillbirths openly – yet if this loss is not acknowledged, it can result in depression, post-traumatic stress and relationship breakdown.

So what should we do when we are able to acknowledge and want to deal with our feelings regarding loss? What should we do when the health service has nothing to offer us?

We were lucky – we had a very good bereavement midwife, who had been especially trained to support parents like us. Sadly, this service isn’t available to many women – only about 40 per cent of maternity units have a specialist, trained midwife to help parents cope.

The support we received made a big difference. We stayed in the hospital for a day or so, in a special room for bereaved parents and spent time with our son. Taking photographs, having imprints made of his footprint, a funeral ceremony – these are important rituals for bereaved parents. My son’s ashes were scattered in a garden of remembrance. When we went home, we had support from community midwives and still saw the bereavement midwife at the hospital.Dr. Heazell

Why are these services offered in some places and not others? Why isn’t there a consistent standard of care given when babies die? I think it is tragic enough to have to go through the loss, why should we have to have regrets about the things we did and the memories we made after they died?
I wish we’d had a special room to stay in with Finley. Instead I saw him in a depressingly stark room, in an old, run down building. The only things in the room were the surgical bed he was laying on, a chair and a creepy crucifix on the wall. While the support I was receiving from the patient care liason from the American hospital was very supportive, seeing him there, in such a HORRIBLE place, was heartbreaking, and part of the reason I didn’t stay very long. It is part of the reason why I have so few photos.
I realise that this topic may be somewhat controversial, but it is an opinion that I’ve reached based on my experiences. I have also read of similar complaints on various forums.
I genuinely hope that as I continue to share my story, through this blog and in meeting others and talking about Finley and what happened, that some awareness is brought to perinatal loss. And I hope that in raising awareness, I am able to give back some. To make a difference in the service provided, to give my imput. To not keep silent. I’m at the point where I’m realising that I want to do more in Finley’s name. I want to figure out the ways in which I can help to make a difference.

Many people never recover from a stillbirth. It is a tragedy which can stay with people forever. I’ve spoken to many bereaved parents over the years and remember meeting a woman in her nineties who had had a stillbirth 60 years previously. She had tears in her eyes as she recalled it.

Last Modified on January 12, 2018
This entry was posted in babyloss
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