What Should I do?

By Harry's Grandad Derek

If you have been affected by baby loss and you have questions, these "tips" may help you in some small way. Although I am happy to give the advice from our experience, I am not an expert other than by experience. Please take legal advice if you feel the need. Harry would have been 6 years old by now, our story, our journey, our closure is still ongoing, please don't underestimate the magnitude of the task you may be beginning.

These are in no particular order. Only do this at a time that suits you, it is draining and it takes over your life. However, I understand that the need for answers and for the truth are incredible drivers.

1. Keep very careful records of what happened. Also keeping a diary of meetings, calls and experiences after the event will be really helpful. Do this straight away and keep it up to date. Who was there, what was said?
2. Report your concerns in as much detail as you can to PAL's (Patient Advice and Liaison Service) and copy in the CEO of the Trust. Try to be clear and concise and as heavily evidenced as you can. Things may change as time goes on but you can always update your complaint.
3. Write a list of all of the points that you feel went wrong. This will help you to focus on the key issues and is a very good reminder tool in a year’s time.
4. Record all meetings that you have, your phone or iPad may have this facility. Tell everyone at the meeting that you are recording the meeting, in this way you can use it in evidence later should you need to.
5. Keep all emails – We have a “Harry” file on our computer that has separate files for Trust, CQC, HSIB, CCG etc.
6. Inform your MP – Let them know you have real concerns and why. It could be an early warning if they have heard from other mums and dads. Encourage any other mums to do the same. If you are unsure who your MP is, go HERE.
7. Has your baby's death been reported to the coroner? If it hasn't and you believe the death was unnatural or preventable, you have every right to report it yourselves. Write a concise email to the coroners office that covers your home post code area. Include facts and any evidence you have. In Harry's case the Trust refused to contact the coroner until we pushed them really hard. Once they had agreed to report, it still took 5 weeks and 3 days to do so. No one will ever criticise you for reporting the matter to the coroner, after that, it is down to the coroner.
8. If you do have an inquest, make sure you engage with the coroners officer and provide them with your concerns and any evidence that you may have. Ask them the questions that you would like answered at inquest. 
9. Harry had a post-mortem in London, this showed that there was nothing wrong with him, describing Harry as "Grossly Unremarkable" but still the Trust refused to call the coroner. I mention this as, a post-mortem that shows nothing, does not mean the coroner is not needed.
10. Make sure you ask to see the Report of Child Death form – Our Trust reported Harry's death as “expected” and put a benign statement in the explanation box that would not raise any further scrutiny up the line. We found this to be outrageous and suspicious
11. Ask for the MBRRACE report – Check it carefully. In Harry’s case there were 9 significant errors including "Were there any complications at birth" being answered as "none". We struggled to get this from our Trust and had to get it from The Nuffield Trust in Oxford mbrrace-uk@npeu.ox.ac.uk
12. Ask for all hospital notes for you and your baby. When you are able, make sure you read them in detail. Are they correct? For instance, we found that Harry’s death internally was shown as an “Unexpected outcome” but externally reported as “expected”. Mark up the notes for easier reference, Small post-it notes are ideal for this.
13. Consider asking the Trust for a Subject Access Request (SAR) for you and your baby. This is a formal request that will give you all mentions of your name in any records the Trust hold, including emails and meeting minutes. They must respond within 1 calendar month. Only do this if you are concerned that the Trust are perhaps keeping information from you. Here is an example of what one Trust offers - Subject Access Request
14. Report your concerns to the CQC - Link Here - Don’t expect much from this but it is good to get it reported. The CQC will only look at systemic failings so focus on system wide issues rather than individual clinicians.
15. Report your concerns to the local ICB – You will need to look up which Integrated Care Board are responsible for your hospital, Google will assist.
16. If your baby was born after 37 weeks, ensure that your case has been reported to HSIB who will carry out an investigation. Make sure you work with HSIB to give them all the information you have discovered. You will know more than anyone else, so tell your story. This report can be very revealing but is used by NHS Resolution when assessing claims so make sure all of your concerns are included. An interesting insight HERE.
17. Keep a copy of everything you send and receive from all agencies. If needed, keep a screen shot of online forms you fill in and a physical folder for anything you are sent.
18. When you have specific evidence of poor practice from midwives and/or doctors, make a complaint to the NMC and/or the GMC – These people are again, very slow but it formalises your complaint. Be wholly evidence based wherever possible as this will give you strength.
19. If your baby died before around 2020, the Trust may well have carried out a Root Cause Analysis investigation (RCA). Sometimes called a Serious Untoward Incident investigation (SUI), make sure you have a copy and that you scrutinise it carefully. You should have been involved in the process. During 2020, the HSIB investigation replaced the RCA so there won't be one. 
20. Try to make everything you do evidence based. You will be deeply upset and in a world of grief. Your emotions may allow you to come to irrational or at least, unproven conclusions, try not to do that. Our case was entirely evidence based and this is what gave us great traction.
21. Be open to the possibility that it was a one off accident. If you can prove to yourselves that it is more than this, it will focus you.
22. Explore the Trust’s board reports, have they had previous unresolved issues? This is a laborious task but can be very informative. Here in East Kent the board reports are published and you can look back historically. We downloaded and opened every board report for the 2 years prior to Harry and searched for Maternity. There will be loads of stuff that is irrelevant but it can also be revealing.
23. Speak to organisations that will offer you support, Sands are good and may be able to do that. These people are also brilliant and have been there - http://www.campaignforsaferbirths.co.uk/ there are more on our contacts page.
24. If your complaint to the Trust is not handled to your satisfaction, write to the Parliamentary and Health Service Ombudsman (PHSO). These people will look at the way your complaint has been handled. You can find details HERE
25. Involve wider family if you can, and of course, if you want to. Your most intimate information will be explored so choose carefully. I have found the partial distance of being a grandfather very useful indeed.
26. In all things, try, if you can, to remain calm, dignified and respectful. A poor Trust will use any opportunity to stop communicating with you if they can pull the “Zero Tolerance” card.
27. When requesting Freedom of Information, you need to focus on what you need to know, and to word things carefully, don’t allow wiggle room! – I discovered mention of an RCOG review in a board report but the report was nowhere to be seen, when I got it, it was a devastating read. As an example – “Please supply a copy of any invited review carried out by the RCOG at any of the Trust hospitals in the last 10 years.” - They may not have had one, if they have, what does it tell you?
28. In everything you do, try to join the dots. Use the information from all sources to build a detailed and evidenced picture and timeline of what has happened. You will quickly find that you know more about your case than anyone and this will never change.

I hope that this page will offer some help and guidance in what we did to find the truth about Harry's birth and death. We all hope that you will find your truth before too long.

Derek Richford