If you are on Twitter, please join #PNDHour on Wednesday June 3 between 8pm and 9pm. I will be co-hosting a chat about baby loss support. All welcome.
Hugo’s Legacy focuses on improving information and communication, especially for parents who have lost a baby. #MatExp is a powerful grassroots campaign that aims to identify and share best practice in maternity services across the country. I am so proud to be helping lead #MatExp; it is a chance to help #HugosLegacy make a real difference.
The #MatExp campaign has grown so much since its official launch at NHS Change Day in March 2015 it now has its own website to store all the ideas, activities and actions. The website has been a labour of love – I started building it only last Wednesday – (today is Monday!). It has been a wonderful example of group working and crowdsourcing with inspirational and passionate people.
June is a month of action for #MatExp, and people are being asked to share what their action will be by posting a selfie. Here is mine:
The loss of my son Hugo in March 2014 has affected me so profoundly my action focuses on bereavement support. Nothing could have been done differently in either my or Hugo’s care from a clinical perspective. However, better communication, especially at the end of Hugo’s life could have made an already heartbreaking situation less stressful. I have written previously of how the news about withdrawing Hugo’s treatment was given.
To compound that finding support to help us come to terms with our loss, was incredibly difficult to source, as I have written about in this post.
A recent discussion on the #MatExp Facebook page revealed that our experience is sadly not unique. The #MatExp community is writing blog posts to summarise the discussions and suggested actions.
The immediate action for bereavement support is one that can be done by anyone, anywhere, anytime – and costs nothing.
- Acknowledge the baby the parents have lost. If you know the baby’s name, use it. If you don’t know the baby’s name, ask. Take the parents’ lead on whether or not they want to talk about their loss. Try not to worry about saying the ‘wrong’ thing. The worst thing you can do is to skirt around the subject, or ignore it completely. To ignore the baby is insulting and upsetting to bereaved parents.
Longer-term actions include:
- Clear, concise, sensible, and up-to-date information to be provided to bereaved parents when they leave the hospital after the death of their baby. Parents need reassurance about the emotions they are likely to feel, and a few pointers about how to navigate grief, especially during the raw early weeks. The information also needs to clearly state how the parents can access appropriate support as and when they are ready.
- Access to counselling support. Too many bereaved parents have had to fight for the counselling and psychological support they need – or have gone without. Some hospitals do offer counselling services: hospitals need to make clear to parents that this is available, and how to access it. Funding issues mean that not every area is able to provide these services, but charities thankfully do exist to fill the gap. Hospital and GP practice staff need to know what support is available locally so they can signpost parents appropriately, or where appropriate make referrals for them. Leaving bereaved parents to source their own support at a time when they are least able to have the tenacity to deal with ‘the system’ is unacceptable.
- Training in bereavement care for health professionals. Surprisingly, many don’t receive this as standard practice. The vast majority of health professionals are caring individuals, but a lack of appropriate training means many are unsure about how best to deal with bereavement, which may lead them to saying things that are less than helpful to parents. What is said to parents at this sad time stays with them forever, so the importance of this training cannot be underestimated. This training should be extended to all staff involved with maternity/NNUs (including admin, housekeeping et al) to help prevent unnecessary upsets.
- Debrief/support to care for the needs of maternity, obstetric and NNU staff after the death of a baby. These staff are deeply affected by the loss of a baby in their care.
For my own action, I am going to be continuing to encourage everyone – health professionals and the wider community – to talk about baby loss – #saytheirname.
I will do this by:
- Continuing to talk openly and honestly about my own experiences on my blog, and on social media;
- Continue to seek opportunities for giving talks to health professionals about Hugo and our story, and for writing guest posts on relevant websites to help health professionals learn from a first-hand experience;
- Helping empower other bereaved parents to talk about their experiences, to help share good practice.
I have already made a start on the first of the longer-term actions: I created simple bereavement information for the NNU at St George’s, where Hugo was cared for and will be seeking opportunities to share this more widely.
In addition, I am writing a book about Hugo, and our first year after our heartbreaking loss.
Parents suffer enough when they lose a precious baby – anything that can help make life after loss a little bit easier is invaluable.
I shall be keeping you up-to-date with progress on #HugosLegacy, #MatExp, and #SayTheirName – watch this space!