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Protected: Stepping Stones – Baby Loss Awareness Week 2022

20 September 2022 at 16:45

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shoeboxofm

Protected: Stepping Stones – Baby Loss Awareness Week 2022

20 September 2022 at 16:45

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10 Years

19 October 2021 at 05:25

I have been doing this for around 6 years now, writing about my experience of losing our twin sons, going over the events, working through every facet of grief, learning and sharing how to support bereaved parents like us.

Over time I have tried to move away from the more personal aspects and focus on the workplace element. That’s what I do at work, what I do in my LinkedIn articles, in the events I do, I try to make it about other people rather than myself.

It’s still there though. I remember a discussion with one of my comrades in grief sharing our first experiences of exploring online support about seeing the people who are always there commenting on every post, some of them having been there years and the fear of becoming like that.

Looking back at that it wasn’t so much the commenting that upset me it was the fact that those comments invariably found a way to go back to their experience, their pain, their trauma rather than the person looking for help. A lot of the way I have been doing things has been a reaction against that. I try not to do that, working on the support not shift approach. Despite that, when people ask me to talk at their events or through befriending they want to know the story.

The danger of telling a story so often is that you risk becoming numb to it, repeating a script by rote rather than feeling it. This hit home when I did an event recently and in my intro spiel I didn’t mention my new son not because I forgot him, it was a script that fell out too easily after so much repetition.

It also hit when I attended a session where for once I wasn’t the only speaker, hearing others speak of their own experiences when I had only spoken about the work specifics. I felt the full horror of those stories and it called back to my own.

It reminded me of another reason I started to move away from speaking about the details of their deaths. The looks of horror when telling the story of the boys. I did used to write about that horror, I re-read my old blogs and some of them scare me. I had to stop writing like that, it stopped being helpful.

What I do, what we do, is part of being a club no-one asks to join. We try to make membership less awful for new members and even old members. What I forget sometimes is I need that help too. That’s why I tried to take a step back from my usual manic activity over Baby Loss Awareness Week. Even saying that, I still wrote a blog, did a panel event while on holiday and tried to keep wheels spinning on what should have been a wider network but what is still a loose collection of groups doing similar things. This was meant to be the official launch of a fully fledged network and instead it was ignored emails and requests for me to do more.

I have never wanted to run a charity in Nathan and Lincolns’ name, I didn’t want them to have to carry that weight. They are there are in everything I do whether I admit or not. If they hadn’t have died I would not being doing any of this. Any of these blogs, all these events would have passed me by. That’s the other issue, I know that before all this happened, I had no idea how to support those close to me going through pregnancy or baby loss. There’s a guilt there that I’m trying to address that tempers some of the fire I used to feel about ham-fisted attempts at consolation or no consolation at all.

I miss my sons. Every day, sometimes so much it becomes a reflex. Some days it hurts more than others. This year has been hard, knowing that the milestone anniversary approaches, trying to do something that honours such a special moment and feeling the weight of that expectation, that guilt.

Last night, on the eve of their birthday, we sat with their siblings and went through a cardboard box of all that we have of them. The cards we were sent when Holly was expecting them and the cards that were sent after they died. We carefully went through the photos of those days showing our children pictures of how their brothers were and how we were at that time. We read the letters and cards and some beautiful words of comfort and wisdom that I wasn’t ready for at the time.

The cubs have always grown up knowing about their brothers and as they get older are starting to understand a little more each year about what they mean to us and what they mean to them.

This is not the birthday we wanted for our sons. This is probably not the post I even wanted to write. Holly’s is better. She writes with a rawness and honesty I haven’t done for so long. She’s wrong though. She’s not weak, far from it, we grieve in different ways at different times, and we support each other when we can. Sometimes grieving is at its best as a team sport.

Today is about trying to feel more and think less.

Happy birthday to you, Nathan and Lincoln.

shoeboxofm

10 Years

19 October 2021 at 05:25

I have been doing this for around 6 years now, writing about my experience of losing our twin sons, going over the events, working through every facet of grief, learning and sharing how to support bereaved parents like us.

Over time I have tried to move away from the more personal aspects and focus on the workplace element. That’s what I do at work, what I do in my LinkedIn articles, in the events I do, I try to make it about other people rather than myself.

It’s still there though. I remember a discussion with one of my comrades in grief sharing our first experiences of exploring online support about seeing the people who are always there commenting on every post, some of them having been there years and the fear of becoming like that.

Looking back at that it wasn’t so much the commenting that upset me it was the fact that those comments invariably found a way to go back to their experience, their pain, their trauma rather than the person looking for help. A lot of the way I have been doing things has been a reaction against that. I try not to do that, working on the support not shift approach. Despite that, when people ask me to talk at their events or through befriending they want to know the story.

The danger of telling a story so often is that you risk becoming numb to it, repeating a script by rote rather than feeling it. This hit home when I did an event recently and in my intro spiel I didn’t mention my new son not because I forgot him, it was a script that fell out too easily after so much repetition.

It also hit when I attended a session where for once I wasn’t the only speaker, hearing others speak of their own experiences when I had only spoken about the work specifics. I felt the full horror of those stories and it called back to my own.

It reminded me of another reason I started to move away from speaking about the details of their deaths. The looks of horror when telling the story of the boys. I did used to write about that horror, I re-read my old blogs and some of them scare me. I had to stop writing like that, it stopped being helpful.

What I do, what we do, is part of being a club no-one asks to join. We try to make membership less awful for new members and even old members. What I forget sometimes is I need that help too. That’s why I tried to take a step back from my usual manic activity over Baby Loss Awareness Week. Even saying that, I still wrote a blog, did a panel event while on holiday and tried to keep wheels spinning on what should have been a wider network but what is still a loose collection of groups doing similar things. This was meant to be the official launch of a fully fledged network and instead it was ignored emails and requests for me to do more.

I have never wanted to run a charity in Nathan and Lincolns’ name, I didn’t want them to have to carry that weight. They are there are in everything I do whether I admit or not. If they hadn’t have died I would not being doing any of this. Any of these blogs, all these events would have passed me by. That’s the other issue, I know that before all this happened, I had no idea how to support those close to me going through pregnancy or baby loss. There’s a guilt there that I’m trying to address that tempers some of the fire I used to feel about ham-fisted attempts at consolation or no consolation at all.

I miss my sons. Every day, sometimes so much it becomes a reflex. Some days it hurts more than others. This year has been hard, knowing that the milestone anniversary approaches, trying to do something that honours such a special moment and feeling the weight of that expectation, that guilt.

Last night, on the eve of their birthday, we sat with their siblings and went through a cardboard box of all that we have of them. The cards we were sent when Holly was expecting them and the cards that were sent after they died. We carefully went through the photos of those days showing our children pictures of how their brothers were and how we were at that time. We read the letters and cards and some beautiful words of comfort and wisdom that I wasn’t ready for at the time.

The cubs have always grown up knowing about their brothers and as they get older are starting to understand a little more each year about what they mean to us and what they mean to them.

This is not the birthday we wanted for our sons. This is probably not the post I even wanted to write. Holly’s is better. She writes with a rawness and honesty I haven’t done for so long. She’s wrong though. She’s not weak, far from it, we grieve in different ways at different times, and we support each other when we can. Sometimes grieving is at its best as a team sport.

Today is about trying to feel more and think less.

Happy birthday to you, Nathan and Lincoln.

On photos and baby loss

1 October 2020 at 16:39

The reaction to terrible news of baby loss at the beginning of Pregnancy and Infant Loss Awareness Month and ahead of Baby Loss Awareness Week in the UK shows why awareness events like this matter.

These events aren’t for bereaved parents, they are for the people who haven’t gone through it to help them understand why photos of these moments are so important.

For so many of us, it will be the only thing we have. Such a traumatic experience has a level of unreality to it, pictures help ground that sense.

“Promoting awareness of pregnancy and infant loss not only increases the likelihood that grieving families will receive understanding and support, also resulting in improved education + prevention efforts, ultimately reducing incidence of these tragedies” 

https://starlegacyfoundation.org/awareness-month/

I share the anger of many on how badly people are behaving whether that’s real people or those that send bots loose on grieving parents.

My only hope is that the strength of the signal of love and support for bereaved parents cuts through the noise of the bots, and those that seek to make lives harder when they are already facing harrowing pain.

Because it is that love and support that endures beyond the noise of tutting, finger wagging, and shaming.

Jess from Legacy of Leo put it beautifully.

Screenshot 2020-10-01 120715

shoeboxofm

Baby Loss in a time of Covid-19 – Support and resources

6 May 2020 at 04:45

Losing a baby is hard no matter what the circumstances, and the impact of covid-19 has made handling this loss all the harder by reducing access to the levels of maternity and bereavement care we had worked so hard to improve.

It can be hard to find support and this is why there are sites like Baby Loss Alliance page collecting resources on support during this time.

Many charities and organisations have changed what services they can deliver, some have suspended services, others have increased the use of remote options.

I’ve been working with the Baby Loss Alliance to bring these materials together and help improve signposting for bereaved parents and those that support them.

The document can be found here. It has a list of organisations offering online support, resources and articles on coping with bereavement and grief during social isolation, and a list of questions and issues about how pregnancy and loss is handled during these times to help inform guidance written on this subject.

The hope is that this material will find its way on to the main Baby Loss Alliance covid-19 page once consent has been granted. In the meantime you can view some of the services I’ve found. If you have any services of your own that you would like to include on the site please email the details to: babyloss@sands.org.uk.

Photo by Karina Vorozheeva on Unsplash

karina-vorozheeva-Kol2ib6ehQE-unsplash

shoeboxofm

Baby Loss in a time of Covid-19 – Support and resources

6 May 2020 at 04:45

Losing a baby is hard no matter what the circumstances, and the impact of covid-19 has made handling this loss all the harder by reducing access to the levels of maternity and bereavement care we had worked so hard to improve.

It can be hard to find support and this is why there are sites like Baby Loss Alliance page collecting resources on support during this time.

Many charities and organisations have changed what services they can deliver, some have suspended services, others have increased the use of remote options.

I’ve been working with the Baby Loss Alliance to bring these materials together and help improve signposting for bereaved parents and those that support them.

The document can be found here. It has a list of organisations offering online support, resources and articles on coping with bereavement and grief during social isolation, and a list of questions and issues about how pregnancy and loss is handled during these times to help inform guidance written on this subject.

The hope is that this material will find its way on to the main Baby Loss Alliance covid-19 page once consent has been granted. In the meantime you can view some of the services I’ve found. If you have any services of your own that you would like to include on the site please email the details to: babyloss@sands.org.uk.

Photo by Karina Vorozheeva on Unsplash

Uncomfortable truths, awareness raising and offence

29 November 2017 at 03:46

Time and time again we come round to the same tension. Often we can’t talk about our experiences for fear of offending / upsetting someone whether that person has suffered loss or is pregnant or not.

We have to moderate the message and any offering that is intended to help people when they feel that they want it should they need it.

If anything is true about baby loss is that there are few absolutes. A strong conviction can flip on a dime in the face of the rawness of loss. This is why when you tell a hospital you don’t want to see your lost baby or have a funeral they hold on to them for a little while in case you change your mind.

I understand that not everyone is ready to talk about baby loss and that’s fine.

We’re not deliberately trying to upset people for fun. We are trying to prevent it from happening to others and improve support for people where that hasn’t been possible.

It may be those that have experienced this loss aren’t ready to talk about it now and seeing coverage is too much.

That’s fine, don’t read the coverage, turn away from the posters, delete the email. If and
when they are ready to talk we want to be there for them and those that do.

I am not doing this because I want to. I’m doing it because I have to.

When there is information emerging that can save lives by changing behaviour and treatment it must not be hidden away.

mbrrace

There is too much riding on this. Not just the lives of babies but the lives of those left behind for the babies that didn’t get to live.

First comes the rage, then the sorrow. I was sick but now I am well. There is work to be done.

#FindingYourWay – Notes from the Sands Conference 2019

27 November 2019 at 13:46

Finding my way to #FindingOurWay

I woke at 3am with a mix of anticipation and dread.  I’ve spoken many, many times on stillbirth and pregnancy loss but not of my sons, not directly.  In blogs, yes but in events I’d always preferred to stick to the higher levels and themes rather than the specifics.

As I walked to the station to travel to the Sands conference, my brain fizzed with the many, many possible things to raise all the while conscious I had about half an hour to do it.  I wanted to speak about so many aspects of loss and what is to be done.

And I did.  Not necessarily in my speech at the panel but with every bereaved parent and all those there working to support them.  Speaking in the margins, in coffee breaks and even the toilet(!), sharing stories, sharing ideas.  It was a great day, speaking with so many great people, tempered by the knowledge why each of us was there while building a sense of community and support.

Stats and the spectre of Shrewsbury

There was some comfort to be taken in the recent statistics showing a reduction in stillbirth and neonatal death from 15 a day to 14 a day.  That’s a lot to celebrate but amongst those headline figures there are some worrying findings around the increase in neo-natal deaths and the increased risk of stillbirth in multiple pregnancies

Dr Asma Khalil’s research presentation was a hard one to listen to especially with that focus and seeing the starkness of increased risk associated with late term pregnancies.  I found it difficult when she described some of the research around this as controversial having seen what can happen when medical intervention like induction or c-sections are seen as somehow a shortcoming or sub optimal result for a trust.   

In 2011, the Shrewsbury hospital issued a press release celebrating the fact its caesarean section rates were the lowest in the country, and telling local media the success was down to “having an environment which encourages natural childbirth and a wide range of strategies to keep caesarean deliveries low”.

While not referenced directly in the presentations the news of Shrewsbury was there in the background.  After the horrors of Morecombe Bay the emerging news is a fresh insult.

News like this strengthens resolve to prevent avoidable deaths and support parents fighting for justice and to make sure that this never happens again.

Update: Since writing this more is coming to light and keeps on coming

Young mothers

Every conversation revealed something new and a combination of hope and horror at every turn.  Much of the discussion was a deepening of the main theme of the event and how to reach different groups.  I heard accounts where following loss, teenage parents were told that it was for the best as they weren’t ready to be parents anyway.

Caroline Lloyd is researching experiences in this area to help improve understanding and support, please share this link with any groups or individuals you think may be able to help.

Workplace support

In the discussions around improving workplace support I heard both good and bad stories.  One recurring theme was around groups and professions geared for supporting others, such as the police force, teachers and carers, failing to support their own staff after loss.  Where loss charities have been active in supporting health care professionals to understand the impact on bereaved parents, it seems like there is a gap in terms of those same healthcare organisations supporting their own staff in their loss.

When I’ve been working on support at work I’ve made the links with the mental health support networks and mental health first aiders, not to medicalise grief and bereavement but to highlight the crossover and shared areas so baby loss is not seen as a niche area and can be part of the wider understanding and conversation.  I was surprised to hear that when one of the bereaved parents had a similar discussion at the Mind conference, she was met with blank stares and bewilderment. On a related point, I was not the only one disappointed by the lack of media pick up on the main theme of this year’s Baby Loss Awareness Week and the woeful state of access to mental health for bereaved parents.

Need for diversity in loss voices

The conference had various places for attendees to celebrate their successes and look at what more needed to be done.  It was good to see the focus of many tags and conversations being on diversity in loss.  This was a good opportunity to provide a signal boost for Jess’ #DiversityInLoss blog series and the #BabyLossHours on this topic, Amneet Graham’s work as part of Willow’s Rainbow Box and her role in Maternity Voices Partnership and the new Twitterchat #BAMEMaternity

Welcome to #BAMEMaternity. I wanted to open up this discussion because it is so important. Taken from the @mbrrace report in Nov 2018, below are some horrific stats regarding BAME Maternal Mortality. This is one factor that made me start this Twitter discussion. pic.twitter.com/oi2V11L6iP

— Amneet Graham (@GrahamAmneet) October 30, 2019

If you haven’t already done so, you still have time to listen to Mobeen Azhar’s fantastic radio show on BBC Asian Network on the topic of stillbirth.  He’s a very skilled interviewer handling a difficult topic sensitively and with real curiosity, leaning into the awkwardness and showing openness to learn. 

There is also a Channel 4 documentary on the higher rate of maternal and infant mortality available here.

“Just don’t let me die.”

Black mums in Britain are five times more likely to die in childbirth than white mums. Is unconscious bias in hospitals to blame?@AyshahTull finds out for #Uncovered: https://t.co/XxzQzSf6pr pic.twitter.com/G4Tyk9WQ8K

— Channel 4 News (@Channel4News) November 20, 2019

Bereaved fathers

The panel discussion was really good and it was great to meet Rob Allen and Jonathan Bird.  David Haig was a true gentleman taking the time to talk with us before the session to learn more of our stories and guide us through the process.  I was nervous about talking about my sons.  Most of the time I tend to stay away from the specifics almost to the point where people may mistake me as an ally rather than bereaved father.  I’m glad I did talk because I spoke to parents afterwards that had had similar experiences.

David made good use of the short time we had together to focus us all on the different ways we found our own way to live with our grief and the way that changes over time.  Hearing the story of Sands United and how it has grown so quickly and the impact it had was incredible.  When it came to Q&A so many of the speakers gave personal accounts of the difference it had made to them and their partners.  It helped highlight the value of not only considering diversity in loss but in support structures too.  Providing non-talking based options rooted in a shared interest can be a powerful way to allow bereaved parents the space to talk if they find it helpful.  Not everyone wants to talk, we can still create the space to allow them to should they change their mind.

I was grateful for David to allow me the prompt to talk of the importance of suicide prevention and accessing help early without waiting for it to be ‘bad enough’ to seek support.  I also spoke of how many different forms of support there are out there and to keep exploring if you find one that doesn’t work for you.  Grief is highly individualised experience and what may comfort others offers nothing for me.  Language can be a big part of that as well as tone.  We can offer our help in finding those different voices, ones that resonate with our own.   

Resources for fathers and partners can be found here.

One more thing…

I had a good discussion on resurrecting the pregnancy and baby loss organisations online (PABLO?) directory and will hopefully get that moving again in the new year.  If you can spare some time to help as a volunteer with capturing support groups or categorising what is already there to help understand what is being offered to whom and where I would be grateful.

sands-conference-2019-richard-boyd-2

shoeboxofm

#FindingYourWay – Notes from the Sands Conference 2019

27 November 2019 at 13:46

Finding my way to #FindingOurWay

I woke at 3am with a mix of anticipation and dread.  I’ve spoken many, many times on stillbirth and pregnancy loss but not of my sons, not directly.  In blogs, yes but in events I’d always preferred to stick to the higher levels and themes rather than the specifics.

As I walked to the station to travel to the Sands conference, my brain fizzed with the many, many possible things to raise all the while conscious I had about half an hour to do it.  I wanted to speak about so many aspects of loss and what is to be done.

And I did.  Not necessarily in my speech at the panel but with every bereaved parent and all those there working to support them.  Speaking in the margins, in coffee breaks and even the toilet(!), sharing stories, sharing ideas.  It was a great day, speaking with so many great people, tempered by the knowledge why each of us was there while building a sense of community and support.

Stats and the spectre of Shrewsbury

There was some comfort to be taken in the recent statistics showing a reduction in stillbirth and neonatal death from 15 a day to 14 a day.  That’s a lot to celebrate but amongst those headline figures there are some worrying findings around the increase in neo-natal deaths and the increased risk of stillbirth in multiple pregnancies

Dr Asma Khalil’s research presentation was a hard one to listen to especially with that focus and seeing the starkness of increased risk associated with late term pregnancies.  I found it difficult when she described some of the research around this as controversial having seen what can happen when medical intervention like induction or c-sections are seen as somehow a shortcoming or sub optimal result for a trust.   

In 2011, the Shrewsbury hospital issued a press release celebrating the fact its caesarean section rates were the lowest in the country, and telling local media the success was down to “having an environment which encourages natural childbirth and a wide range of strategies to keep caesarean deliveries low”.

While not referenced directly in the presentations the news of Shrewsbury was there in the background.  After the horrors of Morecombe Bay the emerging news is a fresh insult.

News like this strengthens resolve to prevent avoidable deaths and support parents fighting for justice and to make sure that this never happens again.

Update: Since writing this more is coming to light and keeps on coming

Young mothers

Every conversation revealed something new and a combination of hope and horror at every turn.  Much of the discussion was a deepening of the main theme of the event and how to reach different groups.  I heard accounts where following loss, teenage parents were told that it was for the best as they weren’t ready to be parents anyway.

Caroline Lloyd is researching experiences in this area to help improve understanding and support, please share this link with any groups or individuals you think may be able to help.

Workplace support

In the discussions around improving workplace support I heard both good and bad stories.  One recurring theme was around groups and professions geared for supporting others, such as the police force, teachers and carers, failing to support their own staff after loss.  Where loss charities have been active in supporting health care professionals to understand the impact on bereaved parents, it seems like there is a gap in terms of those same healthcare organisations supporting their own staff in their loss.

When I’ve been working on support at work I’ve made the links with the mental health support networks and mental health first aiders, not to medicalise grief and bereavement but to highlight the crossover and shared areas so baby loss is not seen as a niche area and can be part of the wider understanding and conversation.  I was surprised to hear that when one of the bereaved parents had a similar discussion at the Mind conference, she was met with blank stares and bewilderment. On a related point, I was not the only one disappointed by the lack of media pick up on the main theme of this year’s Baby Loss Awareness Week and the woeful state of access to mental health for bereaved parents.

Need for diversity in loss voices

The conference had various places for attendees to celebrate their successes and look at what more needed to be done.  It was good to see the focus of many tags and conversations being on diversity in loss.  This was a good opportunity to provide a signal boost for Jess’ #DiversityInLoss blog series and the #BabyLossHours on this topic, Amneet Graham’s work as part of Willow’s Rainbow Box and her role in Maternity Voices Partnership and the new Twitterchat #BAMEMaternity

Welcome to #BAMEMaternity. I wanted to open up this discussion because it is so important. Taken from the @mbrrace report in Nov 2018, below are some horrific stats regarding BAME Maternal Mortality. This is one factor that made me start this Twitter discussion. pic.twitter.com/oi2V11L6iP

— Amneet Graham (@GrahamAmneet) October 30, 2019

If you haven’t already done so, you still have time to listen to Mobeen Azhar’s fantastic radio show on BBC Asian Network on the topic of stillbirth.  He’s a very skilled interviewer handling a difficult topic sensitively and with real curiosity, leaning into the awkwardness and showing openness to learn. 

There is also a Channel 4 documentary on the higher rate of maternal and infant mortality available here.

“Just don’t let me die.”

Black mums in Britain are five times more likely to die in childbirth than white mums. Is unconscious bias in hospitals to blame?@AyshahTull finds out for #Uncovered: https://t.co/XxzQzSf6pr pic.twitter.com/G4Tyk9WQ8K

— Channel 4 News (@Channel4News) November 20, 2019

Bereaved fathers

The panel discussion was really good and it was great to meet Rob Allen and Jonathan Bird.  David Haig was a true gentleman taking the time to talk with us before the session to learn more of our stories and guide us through the process.  I was nervous about talking about my sons.  Most of the time I tend to stay away from the specifics almost to the point where people may mistake me as an ally rather than bereaved father.  I’m glad I did talk because I spoke to parents afterwards that had had similar experiences.

David made good use of the short time we had together to focus us all on the different ways we found our own way to live with our grief and the way that changes over time.  Hearing the story of Sands United and how it has grown so quickly and the impact it had was incredible.  When it came to Q&A so many of the speakers gave personal accounts of the difference it had made to them and their partners.  It helped highlight the value of not only considering diversity in loss but in support structures too.  Providing non-talking based options rooted in a shared interest can be a powerful way to allow bereaved parents the space to talk if they find it helpful.  Not everyone wants to talk, we can still create the space to allow them to should they change their mind.

I was grateful for David to allow me the prompt to talk of the importance of suicide prevention and accessing help early without waiting for it to be ‘bad enough’ to seek support.  I also spoke of how many different forms of support there are out there and to keep exploring if you find one that doesn’t work for you.  Grief is highly individualised experience and what may comfort others offers nothing for me.  Language can be a big part of that as well as tone.  We can offer our help in finding those different voices, ones that resonate with our own.   

Resources for fathers and partners can be found here.

One more thing…

I had a good discussion on resurrecting the pregnancy and baby loss organisations online (PABLO?) directory and will hopefully get that moving again in the new year.  If you can spare some time to help as a volunteer with capturing support groups or categorising what is already there to help understand what is being offered to whom and where I would be grateful.

#OpenUpToGrief – At the Launch of National Grief Awareness Week

29 October 2019 at 04:24

This was a great event, emotionally harrowing (of course, how could it not be?) and interspersed with moments of hope, fire and shared desire that things can and have to be better.

Building on Baby Loss Awareness Week and World Mental Health day the conversations are shifting and National Grief Awareness Week and all its participants will play their part in this. Being open to speak, knowing where support is available, joining the dots between bereavement, mental health provision and suicide prevention. In most of the conversations I had today suicide featured in some way.

There were too familiar discussions of the lack of awareness, the lack of knowing where support was available for people whether they had lost someone that day or 40 years ago. This reinforced the week’s messaging around no time limit for grief. Linda from The Good Grief Trust spoke of her work in talking with schools and the gaps in knowledge around training, policies and support for bereavement in schools, how many schools were unaware of charities like Child Bereavement UK.

There was fantastic work going on at the same time as acknowledgement some areas were not so lucky. I spoke with Cruse who told me of the wealth of support they have on offer and the training available to staff and volunteers to handle suicide prevention, and trauma. When people find it difficult to find local tailored support, generally there will be a Cruse service available.

We talked of how difficult it can be to raise awareness, to reach a wider audience when your cause is seen as too niche and how sometimes charities and organisations geared to support people through difficult times don’t have the bereavement angle covered quite so well.

I spoke with people working to improve funeral care and shared stories of where I’ve seen and heard these things badly handled with vulnerable people making choices at the worst possible time, and the huge gulf between quality of services, compassion and care. How even after the ashes scandals (note the plural) bereaved parents of babies are being told that there won’t be ashes, or given limited information about what shared burial means, and how all of these things have an impact of how people grieve. One of my earliest posts was about comparing funeral directors, I spoke to Kim Bird who has done exactly that.

Signposting is one of those innocuous words but it can have a life changing (even saving) effect when people supporting the bereaved are better equipped to be able to find the resources and help they need. Hearing how Freddie’s mother, Charlotte, struggled to find support when her 13 month old son died and how she was passed from charity to charity with increasing desperation was heart wrenching.

Having access to online tools and search facilities can help reduce that dispiriting experience and help organisations or people find support when the bereaved feel unable to.

This was a great event and while look forward is probably the wrong word, I’m positive about the potential for this week to have real benefit for many of the complicated facets of death, dying, and grieving.

NGAW Open Up To Grief

shoeboxofm

#OpenUpToGrief – At the Launch of National Grief Awareness Week

29 October 2019 at 04:24

This was a great event, emotionally harrowing (of course, how could it not be?) and interspersed with moments of hope, fire and shared desire that things can and have to be better.

Building on Baby Loss Awareness Week and World Mental Health day the conversations are shifting and National Grief Awareness Week and all its participants will play their part in this. Being open to speak, knowing where support is available, joining the dots between bereavement, mental health provision and suicide prevention. In most of the conversations I had today suicide featured in some way.

There were too familiar discussions of the lack of awareness, the lack of knowing where support was available for people whether they had lost someone that day or 40 years ago. This reinforced the week’s messaging around no time limit for grief. Linda from The Good Grief Trust spoke of her work in talking with schools and the gaps in knowledge around training, policies and support for bereavement in schools, how many schools were unaware of charities like Child Bereavement UK.

There was fantastic work going on at the same time as acknowledgement some areas were not so lucky. I spoke with Cruse who told me of the wealth of support they have on offer and the training available to staff and volunteers to handle suicide prevention, and trauma. When people find it difficult to find local tailored support, generally there will be a Cruse service available.

We talked of how difficult it can be to raise awareness, to reach a wider audience when your cause is seen as too niche and how sometimes charities and organisations geared to support people through difficult times don’t have the bereavement angle covered quite so well.

I spoke with people working to improve funeral care and shared stories of where I’ve seen and heard these things badly handled with vulnerable people making choices at the worst possible time, and the huge gulf between quality of services, compassion and care. How even after the ashes scandals (note the plural) bereaved parents of babies are being told that there won’t be ashes, or given limited information about what shared burial means, and how all of these things have an impact of how people grieve. One of my earliest posts was about comparing funeral directors, I spoke to Kim Bird who has done exactly that.

Signposting is one of those innocuous words but it can have a life changing (even saving) effect when people supporting the bereaved are better equipped to be able to find the resources and help they need. Hearing how Freddie’s mother, Charlotte, struggled to find support when her 13 month old son died and how she was passed from charity to charity with increasing desperation was heart wrenching.

Having access to online tools and search facilities can help reduce that dispiriting experience and help organisations or people find support when the bereaved feel unable to.

This was a great event and while look forward is probably the wrong word, I’m positive about the potential for this week to have real benefit for many of the complicated facets of death, dying, and grieving.

#BabyLossAwarenessWeek – Postscript for #BLAW2019

24 October 2019 at 12:39

It’s been a very trying few weeks even before getting to #BabyLossAwarenessWeek but with a timely intervention I got back into the work that needed to be done.

Together we have achieved a lot. There is still much to be done and some things to think about as we pass this week and it starts to fade from public memory.

I’m still speaking to bereaved parents that are struggling to find the psychological support they need. One mother did manage to get counselling after an 18 week wait. The counselling was held in the antenatal ward.

I’m heartened to see some media coverage (thanks to the Independent) of the topic and in local newspapers but much of it was focused on breaking the silence rather than the theme of improving access to psychological support.

As I said in my previous post, there feels like a missed opportunity to link the work of #BLAW2019 with the work of mental health charities also struggling to bridge the gap between asking to people to talk and the access to the support they need

It’s not just a missed opportunity but unintentionally contributes to the fatigue and anger of those with lived experience when it comes to awareness days and their negative perception of them, reducing willingness to engage and participate.

It’s not just an unwillingness, more so than years before I have seen bereaved parents really struggle with the media (and social media’s) focus on awareness rather than change.

What makes it all the more baffling is that there is an interest in this area. Look at the coverage post-Louis Theroux documentary on mother / baby units and hard topics like suicide and psychosis.

There was a ready made Sands #OutOfSite report and the Petals Life After Loss report with infographics, case studies and easily quotable quotes.

Totally agree. Two important reports came out which included clear steps for what is needed to provide psychological support – Out of Sight, Out of Mind from @BLA_Campaign and Life After Loss from @Petalscharity and yet neither of them got the media or SM coverage they deserved.

— Alyx Elliott (@alyxpetals) October 17, 2019

And why won’t terrestrial TV show Still Loved which highlights these issues around the long term mental health impacts of baby loss?

Out of sight out of mind report cover

shoeboxofm

#BabyLossAwarenessWeek – Postscript for #BLAW2019

24 October 2019 at 12:39

It’s been a very trying few weeks even before getting to #BabyLossAwarenessWeek but with a timely intervention I got back into the work that needed to be done.

Together we have achieved a lot. There is still much to be done and some things to think about as we pass this week and it starts to fade from public memory.

I’m still speaking to bereaved parents that are struggling to find the psychological support they need. One mother did manage to get counselling after an 18 week wait. The counselling was held in the antenatal ward.

I’m heartened to see some media coverage (thanks to the Independent) of the topic and in local newspapers but much of it was focused on breaking the silence rather than the theme of improving access to psychological support.

As I said in my previous post, there feels like a missed opportunity to link the work of #BLAW2019 with the work of mental health charities also struggling to bridge the gap between asking to people to talk and the access to the support they need

It’s not just a missed opportunity but unintentionally contributes to the fatigue and anger of those with lived experience when it comes to awareness days and their negative perception of them, reducing willingness to engage and participate.

It’s not just an unwillingness, more so than years before I have seen bereaved parents really struggle with the media (and social media’s) focus on awareness rather than change.

What makes it all the more baffling is that there is an interest in this area. Look at the coverage post-Louis Theroux documentary on mother / baby units and hard topics like suicide and psychosis.

There was a ready made Sands #OutOfSite report and the Petals Life After Loss report with infographics, case studies and easily quotable quotes.

Totally agree. Two important reports came out which included clear steps for what is needed to provide psychological support – Out of Sight, Out of Mind from @BLA_Campaign and Life After Loss from @Petalscharity and yet neither of them got the media or SM coverage they deserved.

— Alyx Elliott (@alyxpetals) October 17, 2019

And why won’t terrestrial TV show Still Loved which highlights these issues around the long term mental health impacts of baby loss?

#BabyLossAwarenessWeek2019 – Joining the dots on mental health

8 October 2019 at 04:41

I’ve seen a lot of flack directed at awareness weeks. I can see they are problematic and can be viewed as a cheap way of acknowledging an issue without addressing the root causes / issues underpinning them.

Particularly around mental health there is a justifiable anger about focus on certain more ‘acceptable’ forms over others and the gaping void between intent and outcome of ‘talk to someone’.

Awareness weeks are a chance for people with lived experience to come forward, talk about it and encourage others to either talk of their own if ready or seek support.

Support comes in many forms and many people are not aware or have the energy to hunt around for them. Signal boosting these services is an important part of addressing that.

@ShoeboxofM Charlies-Angel-Centre has a purpose built bereavement centre in #Leeds. 45 bereavement counsellors, all services are free, no waiting lists, people can self refer, maybe come and have look around ?

— charliesAngelCentre (@charlie29122012) October 8, 2019

What can sometimes get lost amongst the swirl of awareness weeks is their themes and how they intersect.

I’m conscious of awareness week fatigue, that’s why I feel there should be more co-ordination. The issues faced by bereaved parents in accessing mental health support are in many ways similar to those experienced by other groups.

All of these conversations linking together increases the call for improvements so people don’t fall down cracks when it comes to mental health support.

It feels like a competition and the whataboutery faced by any group asking for improvements is real but ultimately is an unhelpful distraction.

The theme of #BabyLossAwarenessWeek is lack of access to mental health support, the theme of #WorldMentalHealthDay is suicide prevention.

Today we are launching the #BLAW2019 campaign Out of Sight Out of Mind, which shows that bereaved parents who need specialist psychological support following pregnancy or baby loss are not getting it. Read the #BLAWOutOfSight report here- https://t.co/oivYRKLDsP

— Baby Loss Awareness Week (@BLA_Campaign) October 8, 2019

There are links between these weeks and aims. They are not in competition.

For those with lived experience, talking about it comes at personal risk and cost. I have seen many active bereaved parents in the #babyloss community really struggle with the demands of their work to prevent more people joining the club, and supporting those that need it.

At the same time, bereaved parents like me face the double of an awareness week and anniversaries of loss.

It takes its toll and while I understand frustration that awareness week are sticking plasters, awareness weeks are part of a wider continual effort to shift the conversation.

It links to #maternalmhmatters and so much more. This year’s #BLAW2019 campaign is focused on that lack of support that is so desperately needed.

We have seen people taking their own life where they have not had support for their losses. I have heard accounts of desperate parents with PTSD and suicidal ideation turned away from MH services as it fell within 6 months of loss.

Yes, #BLAW2019 is a chance for us to say their names and speak of our lost babies, it is also about addressing the points of criticism around awareness weeks ignoring the gap between words and actions.

Out of sight out of mind report cover

shoeboxofm

#WorldMentalHealthDay and #BabyLossAwarenessWeek

7 October 2019 at 03:32

This week marks both World Mental Health Day and Baby Loss Awareness Week and the two are intertwined. 

·         During the pregnancy after the loss of my sons my anxiety became unbearable, I was unable to focus for fear of history repeating itself. My manager was there to provide the space for me to feel able to voice that anxiety and work together on how we could address it in the workplace.”

Whatever the outcome of pregnancy, mental health support is vital to parents and the theme of this year’s awareness week is the lack of support available in this area. Much of the efforts in this area are naturally focused on hospitals but there is a role for the workplace in supporting parents returning from parental leave or following a pregnancy loss, and in this blog you can find links to support. 

Importance of awareness

The theme for this year’s World Mental Health Day on October 10th is a focus on suicide prevention which builds on the work of last month’s World Suicide Prevention Day. I support bereaved parents both inside and outside of the Department and have seen what can happen when people don’t feel able to speak about their pain and need for help.

This #WorldSuicidePreventionDay let’s look back at the @mbrrace report. Many maternal suicides occurred 6-9 months post delivery – where are the extra mental health checks at this time? Care improvements could have prevented 54% of suicides. Continuity of MH care is important. pic.twitter.com/VLwNFUmN1e

— Amneet Graham (@GrahamAmneet) September 10, 2019

The fluffiness of the term awareness raising can hide the brutal core of what happens when people are not aware of the pain and devastating consequences of a toxic combination of isolation, feeling disenfranchised with no support mechanism. This is why we raise awareness, so people can feel able to speak about that pain and find the resources and support available to help manage. This is as true of parental mental health as it is about bereavement.

Awareness weeks and days like these are about equipping everyone with the knowledge and skills to have difficult and awkward conversations without fear. Much like the campaigns on #FindingTheWords, it doesn’t have to be grand gestures or about fixing the unfixable. It can be about listening, naming it and then helping signpost to appropriate support.

Support

National charities such as Sands, the Miscarriage AssociationAntenatal Results & ChoicesChild Bereavement UK and Tommy’s offer resources to help support anyone affected by pregnancy, baby or child loss.

Online directory services such as Hub of Hope (also available as an app), At a Loss and the Good Grief Trust that can help you find more local support charities or counselling. Regular Twitter chats like #BabyLossHour, #RainbowBabyHour and #TweetCradle offer opportunities to speak with other people who have gone through the same. You can also speak to trained bereavement counsellors online using Grief Chat.

There’s a wealth of material available on maternal mental health on this blog and through #PNDHour on Twitter.

There are lots of practical resources to help educate and provide a framework for difficult conversations about suicide and if you can, it’s worth 20 minutes of your time to make use of the Zero Suicide Alliance online training.

Talking covers a broad range of ways to communicate and many services like The Samaritans and Papyrus (for young people) reflect that with options to email, text and write to them. They have advice for people worried about someone else.

No alt text provided for this image

There is help. Awareness weeks can open up difficult conversations but we need to keep them going until they no longer are difficult.

howgrief

shoeboxofm

No alt text provided for this image

#BabyLossAwarenessWeek2019 – Joining the dots on mental health

8 October 2019 at 04:41

I’ve seen a lot of flack directed at awareness weeks. I can see they are problematic and can be viewed as a cheap way of acknowledging an issue without addressing the root causes / issues underpinning them.

Particularly around mental health there is a justifiable anger about focus on certain more ‘acceptable’ forms over others and the gaping void between intent and outcome of ‘talk to someone’.

Awareness weeks are a chance for people with lived experience to come forward, talk about it and encourage others to either talk of their own if ready or seek support.

Support comes in many forms and many people are not aware or have the energy to hunt around for them. Signal boosting these services is an important part of addressing that.

@ShoeboxofM Charlies-Angel-Centre has a purpose built bereavement centre in #Leeds. 45 bereavement counsellors, all services are free, no waiting lists, people can self refer, maybe come and have look around ?

— charliesAngelCentre (@charlie29122012) October 8, 2019

What can sometimes get lost amongst the swirl of awareness weeks is their themes and how they intersect.

I’m conscious of awareness week fatigue, that’s why I feel there should be more co-ordination. The issues faced by bereaved parents in accessing mental health support are in many ways similar to those experienced by other groups.

All of these conversations linking together increases the call for improvements so people don’t fall down cracks when it comes to mental health support.

It feels like a competition and the whataboutery faced by any group asking for improvements is real but ultimately is an unhelpful distraction.

The theme of #BabyLossAwarenessWeek is lack of access to mental health support, the theme of #WorldMentalHealthDay is suicide prevention.

Today we are launching the #BLAW2019 campaign Out of Sight Out of Mind, which shows that bereaved parents who need specialist psychological support following pregnancy or baby loss are not getting it. Read the #BLAWOutOfSight report here- https://t.co/oivYRKLDsP

— Baby Loss Awareness Week (@BLA_Campaign) October 8, 2019

There are links between these weeks and aims. They are not in competition.

For those with lived experience, talking about it comes at personal risk and cost. I have seen many active bereaved parents in the #babyloss community really struggle with the demands of their work to prevent more people joining the club, and supporting those that need it.

At the same time, bereaved parents like me face the double of an awareness week and anniversaries of loss.

It takes its toll and while I understand frustration that awareness week are sticking plasters, awareness weeks are part of a wider continual effort to shift the conversation.

It links to #maternalmhmatters and so much more. This year’s #BLAW2019 campaign is focused on that lack of support that is so desperately needed.

We have seen people taking their own life where they have not had support for their losses. I have heard accounts of desperate parents with PTSD and suicidal ideation turned away from MH services as it fell within 6 months of loss.

Yes, #BLAW2019 is a chance for us to say their names and speak of our lost babies, it is also about addressing the points of criticism around awareness weeks ignoring the gap between words and actions.

#WorldMentalHealthDay and #BabyLossAwarenessWeek

7 October 2019 at 03:32

This week marks both World Mental Health Day and Baby Loss Awareness Week and the two are intertwined. 

·         During the pregnancy after the loss of my sons my anxiety became unbearable, I was unable to focus for fear of history repeating itself. My manager was there to provide the space for me to feel able to voice that anxiety and work together on how we could address it in the workplace.”

Whatever the outcome of pregnancy, mental health support is vital to parents and the theme of this year’s awareness week is the lack of support available in this area. Much of the efforts in this area are naturally focused on hospitals but there is a role for the workplace in supporting parents returning from parental leave or following a pregnancy loss, and in this blog you can find links to support. 

Importance of awareness

The theme for this year’s World Mental Health Day on October 10th is a focus on suicide prevention which builds on the work of last month’s World Suicide Prevention Day. I support bereaved parents both inside and outside of the Department and have seen what can happen when people don’t feel able to speak about their pain and need for help.

This #WorldSuicidePreventionDay let’s look back at the @mbrrace report. Many maternal suicides occurred 6-9 months post delivery – where are the extra mental health checks at this time? Care improvements could have prevented 54% of suicides. Continuity of MH care is important. pic.twitter.com/VLwNFUmN1e

— Amneet Graham (@GrahamAmneet) September 10, 2019

The fluffiness of the term awareness raising can hide the brutal core of what happens when people are not aware of the pain and devastating consequences of a toxic combination of isolation, feeling disenfranchised with no support mechanism. This is why we raise awareness, so people can feel able to speak about that pain and find the resources and support available to help manage. This is as true of parental mental health as it is about bereavement.

Awareness weeks and days like these are about equipping everyone with the knowledge and skills to have difficult and awkward conversations without fear. Much like the campaigns on #FindingTheWords, it doesn’t have to be grand gestures or about fixing the unfixable. It can be about listening, naming it and then helping signpost to appropriate support.

Support

National charities such as Sands, the Miscarriage AssociationAntenatal Results & ChoicesChild Bereavement UK and Tommy’s offer resources to help support anyone affected by pregnancy, baby or child loss.

Online directory services such as Hub of Hope (also available as an app), At a Loss and the Good Grief Trust that can help you find more local support charities or counselling. Regular Twitter chats like #BabyLossHour, #RainbowBabyHour and #TweetCradle offer opportunities to speak with other people who have gone through the same. You can also speak to trained bereavement counsellors online using Grief Chat.

There’s a wealth of material available on maternal mental health on this blog and through #PNDHour on Twitter.

There are lots of practical resources to help educate and provide a framework for difficult conversations about suicide and if you can, it’s worth 20 minutes of your time to make use of the Zero Suicide Alliance online training.

Talking covers a broad range of ways to communicate and many services like The Samaritans and Papyrus (for young people) reflect that with options to email, text and write to them. They have advice for people worried about someone else.

No alt text provided for this image

There is help. Awareness weeks can open up difficult conversations but we need to keep them going until they no longer are difficult.

❌