Sunday, 18 March 2018

We started our petition on a couple of years ago and for the first 18 months we saw the signatures rise slowly but steadily.

We knew that it would take time and it would build and get more signatures as the charity got bigger and our social media audience grew.

At times it could be quite disheartening, the cause behind the petition is so important to us and we wanted to see the numbers rise quickly. However we all spoke about it and realised that it would take patience and perseverance, just like it has been for the charity.

Over the last 3 months the signatures have started to rise at a much quicker rate and it is exciting every time we click on to see what the current total is.

To us it makes total sense that the current bereavement support available to families after the death of a baby or child needs changing.
We are getting families contacting us or visiting our website on a daily basis looking for help and support.
If the current bereavement services were working effectively then our charity would not be developing at the rate it currently is.

In an ideal world there would never have been a need for us to start our charity as Carrie would have been given the correct help and support when she needed it. But that didn't happen and here we are over 5 years later and families are still not receiving the correct support.

It makes us really angry to see that very little has changed since 2012. Initially we thought maybe Leeds was just a one off but now we have families from all across the UK saying that they have been through or are going through loss without professional support.

There is always talk about local authorities carrying out service reviews but then nothing else seems to happen. Often we think that they make the right noises when it is coming up to election time or when there has been a high profile incident in the press. Once the press has died down and the elections have passed then suddenly the review seems to strangely get put on hold for a more 'important issue'.

There are so many bereaved parents and families out there that are crying out for help and support and thankfully now many are receiving that through us, but there are hundreds more sitting at home not knowing where to turn or who to talk to. No one should ever have to go through the death of their baby or child alone.

We are happy to be able to provide for these families but the professionals need to take some ownership of the service they provide, or should I say don't provide at the minute.
Co-operation and collaboration is a big part of making improvements work and we have always been willing to meet with and work with any service if it means that the families benefit.

We do not want to cause a fuss but if we think that things are not improving then we are more than happy to stand up and speak for the families that are struggling.

They need a voice, they are going through one of the hardest losses any family will have to and many need an advocate that will put forward their opinions and feelings.  

When our petition reaches a certain amount of signatures it will become an agenda item in parliament, this is so important as only then will the MP's that seem to have all the power to initiate changes know what the reality is. Our petition is linked to the Department of Health and when someone signs it sends an email to the relevant department saying another signature has been completed. It would be great if we could get so many signing that they become fed up of having emails about us. It would be great to keep them busy and make them look at the thousands of families that this is affecting.

If you haven't signed our petition please do it now whilst you are reading, and don't forget to share it with every single person you know and even those you don't know.

Lets work together to make the UK the best country in the world for bereavement support following the death of a baby or child.
Our initial goal was to make Leeds the flagship city in the provision of bereavement support but over the months this has changed. Now that we are helping families all across the country we know that it needs to be a UK wide goal.

Sunday, 11 March 2018

Mother's Day can bring about many different emotions for a grieving mum. Most will have positive memories of when they were younger and enjoyed spoiling their mother and buying presents. Whilst they still want to honour their own mum the day is now overtaken by the grief they feel at not having their child with them.
For weeks and weeks the shops have been marketing 'Mothers Day' with companies like Clinton's and Card Factory having signs everywhere reminding people not to forget their Mothers Day cards and gifts. We know and understand that these businesses have to sell to keep the business running but the over promotion of this day is just another blow to the grieving mum's and serves as another cruel reminder of another holiday spent without their child.
Each year without their child does not make Mother's Day any easier to cope with.
Often we hear that mum's want to hide away or go out somewhere where no one else is going to be as a way of trying to avoid the families out there enjoying the celebrations.
Here are some ideas that can be helpful to you as you approach any special days throughout the year.
Be gentle with yourself
You may be feeling angry, sad, guilty or a range of emotions because your child died before you. It is not the natural order of life, a parent feels that they should never have to bury their child. Don't worry or try to suppress these emotions, they are a very common feeling and need to be acknowledged. 
Don't push yourself into joining others for the celebrations if you do not feel ready for it. You need to protect your own feelings rather than doing what others think you should do.
Seek out emotional support
Seeking help and support is not a sign of weakness, it takes great courage to reach out to others and say you need help. Unfortunately we live in a society that seems to be led by time constraints and deadlines and grief does not come with a time limit. Grief is different for everyone and everyone grieves in their own time.
Be patient with yourself
Try to talk openly about your child with family and friends and encourage them to talk about them as well. Often people don't want to talk as they feel that it will make you feel worse but that can never happen. You are already feeling your worse and by sharing it can make you feel more supported and understood. Hearing your child's name, especially on Mothers Day, can be helpful. You are still a mum and they are still your child it is just that you cannot share the day together. You need to be acknowledged as a mum.
Don't rush yourself either, if you do not feel ready to talk openly about your child don't worry. Just be patient with yourself and acknowledge that it is ok not to be ready yet.
Create your own memorial
On Mothers Day find a way that you can put your energy into doing something in memory of your child.
If you are the grandparent, remember that it can mean so much to your child to send them a card. This acknowledges that they are still a mother and that it is their day as well. Many feel that because they do not have their child with them they don't warrant a card. If anything they need the card more, they need to know that they are remembered for the mother they are. We still get Carrie cards and presents on Mother's Day, she still is and always will be Charlie's mother and needs to be honoured for that.
Light a Candle
Allow yourself time during the day to have some quiet time, maybe light a candle, to sit and have some focussed time. Sometimes this can be quite helpful in giving you some time to think about your child and how they still effect your life every day.
Give yourself permission to grieve and talk
Whilst some people might make you feel uncomfortable talking about your child it is so important that you do so. If your child had stayed with you then people would expect you to be talking about them, just because they are not here does not make them any less important. You need to share them with others and are proud to talk about them. You will find the people that want to hear about them and are happy to share their memories with you. Make sure that these are the ones that you surround yourself with on Mother's Day. Grieving needs you to talk about them, acknowledge that they were here and celebrate the achievements they made. We all talk with great pride of Charlie's 19 minutes of life. He was a tough cookie who fought to try and stay with his mummy. Charlie's life, however small, has gone on to affect so many lives and we will always want to talk about him and celebrate his contribution to the changes in bereavement support.
Talk with your spouse/partner
Talking to your spouse/partner and encourage them to express their feelings as well. Even if the partner isn't the child's biological parent they are still affected by their death. They love you and seeing you struggle is difficult for them. Talking can help them to understand how the death has changed your life. They want to feel that they can support and help you.
If they are the biological parent they too need to grieve and often partners don't seem to want to talk to each other. Often I think this is because they both feel that they will upset the other one if they talk about their baby. In reality sharing their thoughts and emotions can help them both to try and cope with the pain and grief.

If you know a bereaved family remember to wish them a happy Mothers' Day, Fathers' Day, Baby's' birthday, they will appreciate that you have both remembered them and that you have acknowledged that they are still parents.

Sunday, 4 March 2018

We are already really busy making plans for our 3rd Charity Ball on 29th September 2018.

Each year we become better and better at organising events, using everything we have learnt from previous ones. It has been a huge learning curve for everyone of us but now we are pretty good at approaching people and companies for services, gifts and donations.

To start it felt very unnatural asking for things for free, but now we are seeing how much we are able to support families because of it it has become much easier.
When you work with so many families, and see them at the lowest they have ever been in their lives and know that we are able to provide that help, friendship and support, knowing that we can do this because of the generosity of all of our supporters makes you feel very lucky.

This year the Ball is going to be our best one yet, we have lots of exciting things planned and we have already been able to secure the services of some great people.

At both of our previous Ball's we have given a few awards to people we wanted to thank for the contribution they make to both the charity but also to the families we work with.

This year, as the charity has grown and grown, we are opening up our awards to the public.
We want people to put forward nominees that they think deserve recognition for things they have done regardless of where in the country they are from. 
They could have raised funds for your favourite charity, have they gone above and beyond and supported you or your family, is there someone you admire and want to say thank you to.
We have several categories for nominations;
  • Bereavement Support Worker
  • Best Bereavement Service (Hospital or Community)
  • Midwife of the Year
  • Inspirational Individual of the Year
  • Outstanding Volunteer
  • Young Fundraiser of the Year
  • Corporate Fundraiser of the Year
So if you know someone you would like to put forward or you know a family that might want to make a nomination please do it.

We want to be able to give a big THANK YOU to all the nominations for all the help and support they give. Often these people are the ones who do it because they care and do not do it for recognition.  However we feel that they deserve to be acknowledged and praised.

There is a nomination form on our website that anyone can complete.  

We look forward to sharing all the nominees with you once the closing date has arrived.

Sunday, 25 February 2018

Wednesday evening, the charity mobile phone rang.
Answering it, expecting to talk with a family in need of support, I was surprised to find out that it was an independent reporter. She wanted to arrange a time to meet up to film an item for Calendar News.

We always look for ways to get the charity's work out on as many media sites as possible so my initial thought, before even knowing what she wanted us to talk about, was to say yes.

She then went on to explain that she had been at the Leeds Council meeting where the budget for the next financial year is agreed and announcements are made of any changes.
Counsellor Judith Blake had announced during the meeting that as from March 2018 any family that lose a baby or child (up to the age of 16) will no longer have to pay for the cremation or burial. After the initial positive thoughts running through my mind I was suddenly thinking that there was not enough information for us to make an informed response. I spoke with another member of the charity and we both agreed that more information was needed.
We contacted the local counsellor to get some clarification of what this actually meant and how it would benefit bereaved families.

Any changes made that can make things more accessible and easier for families to comprehend has to be good but with local elections looming you always feel a little dubious as to whether or not these were plans that would definitely happen or just put out there to gain votes.
I know that may sound cynical but after 5 years of attending
meetings and corresponding with local authorities we have learnt not to always take things at face level.

When we received a reply we felt happier that it is an issue that is being taken seriously and that it will be happening. I was then much happier to be involved in a television interview about our response to the announcement.

I met up with the reporter at the charity office the next day. She was really good at making you feel at ease and said that it would be pre recorded so that it could be edited if I made mistakes or got stuck for words.
She initially wanted to learn more about the charity and why we had set it up.
I am always happy to talk about our Charlie and share his bravery and determination. It makes me feel so proud to talk about him and explain that he has left a legacy that will continue to get better bereavement support for families across the country.
He may have only been here for 19 minutes but in those minutes he has provided us with the motivation and drive to keep campaigning.
If Charlie had survived he would have been a special little boy, loved by all his family, and in an ideal world that is what would have happened. But unfortunately no matter how hard Charlie could fight it was not enough to allow him to stay with us. Now, through the charity, Charlie is known by thousands of people across the world and he has made a direct impact on so many families. Charlie truly is a very very special little boy.

The reporter seemed genuinely interested in finding out more about us and wanted me to explain our board in the office with pictures of people and events we have hosted. It felt as if she had been effected by our charity and our aims for the future. She also mentioned that if she was able to help us with any publicity in the future she would. This was brilliant to hear and I am pretty sure we will be contacting her at some point, she may even regret saying it lol.

She asked about how we felt about the news of cremation and burial costs being removed for families of children up to 16 years of age.

When a family is trying to understand and cope with losing their baby the last thing they need to be dealing with is the financial cost of laying them to rest.
As we know from our experiences your brain is not able to process much of what is being said to you let alone be able to find out any information needed.
We also know that most families cannot just lay their hands on the amount of money needed to bury their child which can then add extra stress and upset because they feel like they are letting them down.
It can often cost up to £600 to bury a child and we have known families that have had to set up crowd funding pages to enable them to be able to afford it.
This is so wrong.
A family doesn't need the extra pressure and anxiety.
When you have a child you are making memories throughout your lives together but when your child dies you do not have the chance to do this anymore and having somewhere to go to feel near to them is so important. Having a child buried gives the family a place to go together and to make memories there. Many families find it helps having somewhere to go and place cards and toys or to talk to their child. 

When the councils new plan comes into effect we think it could have a big impact on families at one of the most difficult times of their lives. Taking some of the burden away from the families will allow them to focus on their grief and be able to be together as a family. At the minute this service will only be available to families that live in Leeds but we hope that if other councils see that it can benefit many families that they may decide to change their current regulations.

The interview should be aired on Calendar News tomorrow, we hope that many of you can get to see it and find out more about the changes that happening in Leeds. 

Sunday, 18 February 2018

A few weeks ago the charity was contacted by a student midwife who wanted to come and meet us to find out about the work we do. She wanted to improve her knowledge of the bereavement support out there for families following the death of a baby or a child and had found us during a Google search.
She spoke of how surprised and shocked she was that there were very few groups out there specifically for baby and child loss bereavement support. She said that she felt unprepared to be faced with a family that was having to deliver a stillborn child or a child that was likely to pass through illness shortly after birth.

We are always happy to welcome anyone to come along to meet us and we felt that this could be a really good chance to let the future of midwifery know about what is and isn't out there for families. 

Since we began the charity we have always said that we want to work with the NHS and any other agency that works with or comes into contact with parents and families that have experienced the loss of a baby or child. We have never wanted to antagonise these people or, as many of them think,  'have a go'. The only way to make improvements and identify areas for improvement is for everyone to work together. Unfortunately we have at times found resistance to meet with us.

This week the midwife came along to one of our Community Support meetings.
She explained that during their training there is no specific training given on bereavement and the support needed around it. It is expected that if the students wanted to learn more about it they were to do so off their own backs and in their own time.
This to us is absolutely ludicrous.
How can staff be expected to support families through a loss when they have not even been given basic training around bereavement. 

So many families we come into contact with say how they felt that the nurses and midwives didn't know how or what to say and do around them and they often felt that they looked very awkward and uncomfortable.

Grief is a very complex state and can show itself in many ways. It can lead onto other illnesses and will show as physical conditions. If the staff are not trained to identify these signs and symptoms how are the families expected to receive an adequate standard of care. It is not even the nurses fault, as I am sure many of them if not all would be happy to undergo extra training.
Even just typing that makes me feel angry and so worried for the families that are still being let down by the system that is supposed to be there to help them.

Bereavement support after the loss of a baby or child has been given a lot more air space on TV and radio lately and many trusts have already started reviews of the midwifery services in their area/trust. However when you look further into it the area of bereavement midwifery services only usually takes up a very small section of the review. It seems to still be an area that still does not get the acknowledgement it deserves and needs. 

The midwife who visited us seems very keen to improve her knowledge and was enthusiastic about trying to do some voluntary hours with hospital staff who work within the bereavement teams. I know this is just one nurse, but 1 is a start and hopefully she will go back and tell her colleagues and tutors about us and the others that are out there supporting those families. 

It was also good to be able to share ideas about how simple changes to the systems used both in hospital and in the community could make such a big difference.
One hospital she had experienced had used a 'Teardrop' sticker on a ladies notes which showed that she had previously lost a baby.
We have always said that there needs to be a way that Dr's, GP's, Midwives and Health Visitors could all communicate effectively to ensure that this information was known by all involved with the family. Such a simple but effective method but one that could really make an impact. If only we could get a standardised pathway across the country that all followed the same way of notifying and recording all important and relevant information.

We know it won't be easy and we know it won't happen quickly but we are ready and willing to keep up our campaign to make these changes happen.

One thing is for sure Charlies-Angel-Centre Foundation will never give up and we will continue to campaign until there are enough bereavement midwives for each NHS trust, there are safeguards in place to ensure that no family falls through the net and gets inadequate support and that communication between all disciplines is effective and proactive.

Initially the charities aim was for Leeds to have the best bereavement support following the loss of a baby or child in the country but now we want all of the UK to have a bereavement service that would ensure that no family has to go through loss alone and that they all received adequate and timely support through whichever services were needed.

Meeting the student midwife gave me a little bit of hope that the future of bereavement support within midwifery services could be ready to improve. If she can realise that there needs to be a better system of support then there must be many more out there that are also starting to see that changes need to happen.

Sunday, 4 February 2018

This week I was contacted by Radio Aire to get my thoughts and reactions to the news that the Health Secretary, Jeremy Hunt, has ordered a review to look at the existing legislation regarding rights of parents when they have suffered a late miscarriage.

Currently if a family experience a miscarriage before the 24th week of pregnancy there are no formal processes that allow them to legally register their baby's name or receive a certificate.
Jeremy Hunt has announced that these parents could potentially be given new rights which would enable them to certify and register their baby on official records.
At the moment only parents whose babies are born at 24 weeks or more have a right to register their child's name and receive a certificate of registration.

The review will look at whether existing legislation should be changed and will look particularly at concerns of expectant mothers being discharged after a miscarriage without the same package of care that a family who have experienced a stillbirth later in the pregnancy does.
It will be carried out by the Department of Health and Social Care alongside the General Register Office for England & Wales and is planning to look at how they could improve wider support including training for staff on how to support mothers after a late miscarriage.
They are also planning to look at how the NHS could improve access to gynaecology, maternity and bereavement care after a late miscarriage and other causes of baby loss.

Mr Hunt has been quoted as saying
" There is nothing more agonising than losing a child, so I am passionate about our national mission to reduce stillbirths and neonatal deaths, but we also want to take a fresh look at what more we can do as a health service and government to help support families who do face this devastating loss - particularly for those who lose babies through late miscarriage or neonatal deaths under 24 weeks. Of course nothing can take away that pain, but we think there is more to be done to guarantee the sensitive and compassionate care we would all want for our families at this most distressing time."

I explained to the radio that we have heard parents say that when they have lost their baby before 24 weeks they feel as if their child has been disregarded and treated as if it isn't a baby. They often leave hospital empty handed, not even being given any leaflets or information regarding where to get support or what to do next.

As soon as a couple take the pregnancy test and see those lines telling them they are pregnant their hopes for their child begin. To then have this life dismissed by professionals as merely an 'early loss' is totally devastating. They had begun to make plans about their future with their baby and their child was wanted and loved just as much as a family going through a later loss.

Being able to register their baby and having an official certificate can mean such a lot to a family at this heart breaking time. The acknowledgement that their baby did exist. 
I also spoke of the need for proper communication between all agencies to ensure best quality care is offered as well as a standardised criteria that all hospitals should follow which will ensure that no families fall through the net.

We have been campaigning since 2013 for a review of the systems that are supposed to help and support bereaved families following the loss of a baby.

This review is hopefully going to be just the start of improvements to the current substandard care packages that some areas of the country offer.
Whilst we think that this review should have happened a long while ago we are pleased that something is now being done and hopefully families voices will be heard and listened to.