Tuesday, 28 April 2015

Hi Charlie,

Nanna Curtis here. 

I have been thinking about you lots lately. I always think about you every day but you seem to be on my mind more than ever.

I think its because of everything positive that is going on with the charity at the moment. 

Over the last three weeks we have been doing more publicity about the charity and it has meant having to tell people your story again. Every time I tell people all about you and how brave you and your mummy were it makes me feel so much pride.

When I went to Radio Aire to talk about the new midwife the NHS have employed I ended up crying a little bit. It wasn't through sadness though, it was with pride. I felt so proud of you and what you have managed to achieve. 
The Radio presenter, Bethan, said to me that we should all feel proud of ourselves for what we have achieved. I said to her that you were our inspiration and everything we had done was for you and because of you. 

It made me see that everything that we have all gone through over the last 2 years has been rewarded. The people in those top jobs who make all the decisions had actually listened to us and all the people that have supported us. We know that there is still a very long way to go but at least we can see that they are making changes at last.

It sounds silly but I have had a feeling for a while now that 2015 is going to be a really good year for the charity and as we make these leaps forward with our progress it just makes me feel it more.

What we need now is for a company to decide that we are a charity they would like to work with and come on board as sponsors then we can get your centre open. We can't wait for the day that we can open the doors to Charlies Angel Centre.

Ideally we all wish that we had never had to go through any of this and that you were here with us causing normal toddler chaos, but this is our journey now and we will fight till the changes are made. 

You have given us the strength to keep going and every time we feel ourselves waning we just think of you and that spurs us back on.

I hope that we all make you as proud of us as we are of you Charlie.

Thursday, 23 April 2015

Please check out and share our new Go Fund Me page that Charlies Mamma Key has set up to raise funds to purchase a Cuddle Cot for the Rosemary Suite at Leeds General Infirmary.

The aim is to raise £1500, the cost of 1 Cuddle Cot.
Below is the link for the GoFundMe page:


Charlie's Cuddle Cot Campaign

Dealing with the death of a baby is an incredibly difficult time for parents. 
Many bereaved parents wish to spend more time with their baby.
After losing Charlie if we had been able to use one of Cold Cot Systems from Flexmort Ltd it would have given us as a family more time to spend with him.

Time allows bereaved parents to form an important bond with their baby; whether changing a nappy, dressing there baby, taking photographs or simply just staying close and this unquestionably helps families in dealing with their loss.

The problem is that in a warm room the baby’s condition can deteriorate quickly, therefore cooling the baby is absolutely essential. 
Transferring to and from the morgue is now widely regarded as an outdated practice as it is traumatic for parents to repeatedly go through the separation process whereas the CuddleCot allows the family to spend every moment with their baby, precious moments, where every minute counts.

Thursday, 16 April 2015

Today has been a really positive day for us.

Two days ago we received an email from a lady called Alison Bowes. 
She told us that she was the new Lead Bereavement Midwife for Leeds. 
This is a brand new post created by Leeds NHS and Alison is going to be developing the post.

She is planning to support women and their families upon diagnosis of a problem with a pregnancy, leading up to delivery and then following discharge from hospital. 
She aims to support them within the community rather than them having to keep returning to the hospital.

Her ideal situation almost mirrored our aims, 'That all bereavement services should be brought together to prevent further distress and to provide seamless care.'
To hear someone else say that this is what is needed was fantastic and showed us that our fight for improvements was right.

She asked to meet with us today to look at what we as a charity are aiming to achieve, but to also talk to us as a bereaved family to see where we thought improvements and changes need to be made.

I don't think she realises quite what she has let herself in for !!

Alison came across as a very caring and motivated lady who has some excellent ideas on how to improve the support bereaved families receive. 

She was really keen to listen to our experiences and agreed with us that the support families receive on discharge is vital. 
She shared many ideas she has for developing her role and asked for our feedback on her ideas and if we could suggest any other ways of providing support.

We all felt that she was really listening to our ideas and was taking our suggestions on board. 

All of us feel that this post may have come about partly due to our persistent campaigning and meetings with NHS bosses. 

We have had times over the last 2 and a half years when we have wondered whether it was worth all the stress but today for us showed that it most definitely was. 

We feel so very proud of our Charlie, and really do see that now Alison is in post the lives of hundreds of bereaved families will be made easier.

Thank You Charlie for making us keep up the fight.

 Ideally I think all bereavement services should be brought together to prevent and further distress and to provide seamless care. 

Sunday, 12 April 2015

                                                            August 1st  2015 

                                            1 - 6pm

                                  The New Middleton

                                     4 Thorpe Street



                                     West Yorkshire

                                         LS10 4HD

Thank you to the New Middleton for there support and making this event happen.

Plans are fully under way now for our 2015 Family Fun Day to raise vital funds for our charity. 
As usual we have been offered amazing support by some local businesses who are providing us with many varied activities on the day. 

 Ultimate Party People have kindly arranged for the children at the day to get a visit from a few favourite characters.
Endeavour Discos have again donated their time to provide us with fantastic music throughout the afternoon.
The Face Paint Parlour is joining us again to brighten up the faces of both children and adults.

These are just a few of the people helping us out and as we get more information we will share it with you.

This week we have a meeting with a fair ride company about providing us with some amazing rides for our younger guests to enjoy.

When we sit back and look at all the time and equipment these people give to us to help us with our fundraising it fills us with awe. These people are amazing and without them we couldn't have our Fun Day.

We want this years Fun Day to be a day filled with happiness and laughter, and to be an even bigger success than last years event. 
We are learning as we go along and feel that each time we put on an event we are getting better at it.

To make our events even better we need your support, not only by helping with publicity and time, but by coming along and joining us.

We would love to see as many of our supporters come along on the day so we can meet them in person and say a huge Thank You for your continued support.

We will keep you all up to date of new things that are arranged for the day and look forward to seeing as many of you on the day as possible. 

Monday, 6 April 2015

We have now received our letter from the Department of Health Minister, Rt Hon Norman Lamb, following our letter being forwarded by the PM. 

It is good that we are getting our charity name and issues out there to the people that can make changes and decisions but it would be even nicer if we were getting the answers we need. And unlike the letter we received from the PM at least this letter was addressed using our correct names.

Dear Mr & Mrs Curtis and Mr & Mrs Key,

Thank you for your recent letter to David Cameron about bereavement counselling. As your correspondence relates to healthcare, it has been passed to the Department of Health.

Firstly, may I say how very sorry I was to read of the death of your grandson, Charlie Arthur Curtis. Please accept my sincere condolences.

The Department of Health has funded a number of bereavement services through the Voluntary Sector Investment Programme. For example, in 2012, it awarded a grant of £304,105 to the Child Bereavement Charity for the Improving Child Bereavement Support Project. The project aims to improve access to child and family bereavement services at a local level, support local authorities, social services and health services to establish and deliver effective child bereavement services, and to provide child bereavement support to families following a death of a child or a parent or carer.

However, it is the responsibility of clinical commissioning groups (CCGs) and local authorities to commission services based on their local populations needs and to ensure that the services they secure for local people provide the best value for money and real quality for patients.

I would therefore suggest that you continue to discuss this matter with your local CCG.

I hope this reply is helpful.

Norman Lamb

I have already penned a reply.

Dear Mr Norman Lamb,
Thank you for your reply to our letter forwarded to you from the PM’s office.

It is good to hear that there has been funding granted for the Child Bereavement Charity over recent years and that they have been able to provide a valuable service.

However there is still a gap in the bereavement services offered to families following a loss. 

We have been in talks with our local CCG and have attended meetings and governing body community meetings. At our last formal meeting we were assured that there would be a review of the services within Leeds leading on to a change of provisions if required. They informed us that the review would take a year to complete. 

We have tried to find out whether the review is taking place and how it is going but currently our requests for information have not been answered.
I understand that it should be our local authority that commissions services based on local need but this does not seem to be happening in the Leeds area. From the Freedom of Information report generated from a request by our local radio station it was highlighted that bereavement counselling was severely lacking, with 32,000 people waiting for counselling in Leeds alone.
We would welcome your assistance with our request for information from our local CCG.
Our aim is to improve the provision and availability of bereavement support initially in Leeds but ultimately UK wide and we are more than willing to work with the CCG and the Department of Health to make the changes happen. 
Any service provided should be needs led and the best way to find out what is needed is to listen to the people who require help. 
We have had contact through our social media and website from many families across the UK saying that there is a general lack of bereavement services. Surely this cannot be right and will ultimately lead to more people requiring more intense and expensive intervention. 
If the appropriate support was available from the onset of need then we would not be in the position of trying to campaign for improvements. I look forward to hearing from you. Yours sincerely Ruth Curtis (Mrs)

Lets see what response this letter brings, hopefully it might start a conversation between the Department of Health and our local CCG.

Wednesday, 1 April 2015

I read this the other day and thought it would be good to share with all our blog readers. I have read it several times and it says exactly what bereaved parents are feeling so brilliantly. 
5 Rights of the Bereaved
1) You have the right to your feelings. 
No one knows exactly what it is like for you to lose your child. No one has walked the exact same path as you. No one has lost THIS child who was unique in his or her own special way. You have a right to feel how to you feel about your loss. Some days will be better than others. Today might be a good day, moments of laughter might even occur, but that doesn’t mean two years from now a deep sadness might not wash over you and you will be tearing up when back to school time rolls around and you’re one child short when dropping the kids off to school that day. You get to have all of these emotions and experience them and don’t let anyone else tell you otherwise.
2) You have the right to grieve however you choose. 
Remember the saying, “There is no right or wrong way to grieve.” We are all unique, therefore the ways we grieve the loss of our child will be unique. If you decide to keep their room the same and untouched for a year after their death, that’s fine. If you still have cake and a celebration on their birthday every year, great! If you get a tattoo in remembrance and it’s out of the ordinary for you, super! None of these are more appropriate or better than the other. As long as you are not hurting yourself physically or emotionally, there really is no “right” or “wrong” way to do this. Only your way.
3) You have the right to grieve for however long you need.
 Similar in nature to #2 . There is also another great saying, “There is no time limit on grief.” I’m sorry to say you will carry the weight from the loss of your child with you throughout the rest of your life. You will remember them until you can no longer breathe. Don’t let people tell you otherwise. Yes, the grief will shift and morph and move. Some days it will be as if it’s not there at all while others is will be a heavy burden to bear, but it will never fully or completely go away. And this is okay. You have the right to grieve for as long or as little as you need, even if it’s a lifetime because this grief is great because the love was great.
4) You have the right to find peace when ready. 
At first grief hurts. There are really no words to describe the pain that comes from losing a child. It is disorientating, out of life’s order of events, and feels so soul-crushing. When it first happens, and in the months and years after, it may seem as if any sense of peace will never find you again. However, over time, it will come. It won’t ever be the same sense of peace you felt before loss; you know the one that has innocence tag along with it by its side. It will be a sense of settling into the vulnerability of your soul. It’s a place of knowing the pain and being accepting of it. Not necessarily okay with it, but a realization that peace and pain can exist on the same plane, in the same space and at the same time. You have a right to find this place and embrace it when you are ready. Don’t let anyone else force you there; it’s a place you must find on you own time and at your own speed.

5) You have the right to remember and speak their name. 
You know when people ask you that silly now confusing question of, “How many children do you have?” Guess what? You have the right to give the real answer. You should say their name as much and as often as you like. Include their name in holiday cards say their name in nightly prayers. As they say, “My child did exist,” and you have a right in remembering and speaking of their life and the love they brought to it and in many ways still do. I mean if we don’t remember who will? It’s our right as bereaved parents to carry their memory with us for as long as our heart beats and speak their name as much as we desire as it is music to our soul.