My speech at the Houses of Parliament (for Together for Short Lives)

I'm so busy at the moment, it's crazy!  Juggling the demands of my day job three days a week with freelance commitments and campaigning on behalf of families like ours.  Families who are caring for the sickest children in the UK and those who are grieving the loss of their child...

It is this work, my campaigning work, which gives me the most pleasure and fulfilment.  It isn't about simply telling our story, it's about working with some of the biggest influencers in the palliative care sector to effect change, to really make a difference.

Tonight I'm in a hotel in Bristol and tomorrow I will join a closed event of academic and medical influencers discussing how we manage end of life care in the UK.  In the evening I will be speaking at a public event looking at what needs to change, how we can do things better.

It's another night away from my children but it's another opportunity to change hearts and minds, to learn from what has gone well, what has not gone well and to continue to move forward in engaging the public in open conversations about how we talk about death and how we care for those who are life limited.

Earlier this week I attended an event at the Palace of Westminster as an ambassador for the children's palliative care charity, Together for Short Lives.





In the spring I gave oral and written evidence to an all party group of MPs who were looking at children's palliative services in the UK.  On Tuesday 23 October the report of the findings was launched and I was invited to speak to a large group of MPs and members of the House of Lords from all parties together with people who work in palliative services, supported parents and young people and fellow charity ambassadors.

It was such an honour to be asked and I was aware as I spoke that I was speaking not just for our family but for the thousands of families just like ours.....



You can read the report and download the oral evidence here.

This is the transcript of my speech (sorry it's so long but it's so important and I know that those who heard it left with a far greater understanding of the challenges families face, day in, day out)...

I have a recurring nightmare.  It’s one where I’m in the middle of setting up my daughter’s intravenous drip, connecting a prescribed bag of fluids to a central catheter that runs in her jugular vein, the tip of which rests in her heart.  This is total parenteral nutrition or TPN.  Daisy, my daughter, had intestinal failure and needed to receive all nutrition directly into her bloodstream, 24/7, I was trained to administer this specialist procedure, alongside countless other procedures in order to keep her alive. 

The nightmare is always the same, I’m halfway through putting up the drip, keeping everything sterile and safe and I drop an IV syringe on the floor…it’s my last syringe, I hadn’t had time to pick up my monthly allowance from the community nurses and it’s now 9 o’clock, my other children are in bed, I’m on my own and the only option I have is to wake them up and for us all to go to A&E to collect the essential supplies that keep my daughter alive….  

Except this is not a nightmare, this was my reality…. 

Daisy was a much wanted fourth child, she was born prematurely and not long after diagnosed with a rare life limiting disease caused by a sporadic gene mutation.  Our other children were 7, 5 and 2 and our lives changed overnight.  I gave up a successful business career and became Daisy’s full time carer negotiating the alien world of hospitals and community services. 

We worried about money, we were one income down which put huge pressure on my husband Andy, we worried about our other three children, they only had one shot at childhood and yet often they would go to bed at night only to wake up the next day to discover that their sister had been blue lighted into hospital and their mum was with her, most of all we worried about Daisy…. 


We mourned the loss of the child we thought we were going to have and we grew to love this little, feisty, fragile, determined girl, not knowing how long she would be with us but knowing that our time with her was limited….

 When Daisy was six months old were thrown a lifeline when we were accepted for support by our local children’s hospice, ShootingStar-Chase.  With no family nearby to help us the hospice walked alongside us, giving us much needed respite time, providing sibling support for our children and just simply allowing us the opportunity to catch our breath and enjoy precious time as a family.

 Daisy’s care became more and more complicated.  In 2008 she went into hospital and began what turned out to be a year-long. Her gastro-intestinal system had failed and Andy and I were trained to administer her intravenous nutrition that would keep her alive and enable us to bring her home. It was clear that her health was deteriorating, she had multiple surgeries to form stomas, her bladder failed and she had surgery to form a mitrofanoff stoma so that she could be catheterised directly from her abdomen, she lost the ability to walk and became wheelchair dependent and then the cruellest blow, she developed complex, multi-focal epilepsy…. 

I learned medical procedure after medical procedure in order to keep our family together, to keep Daisy at home and out of hospital, I juggled her care with caring for my other three children, by then my two boys had been diagnosed with high-functioning autism… It was overwhelming…we were physically and mentally exhausted. Daisy was referred to the palliative care team at Great Ormond Street.  With their support we developed a workable symptom care plan for her.  Our palliative consultant came with us to appointments and she liaised with our local teams helping us fight for a joined up care plan for our girl.  We also began to have detailed conversations about end of life planning, what we wanted for Daisy, what was important for her.


Quality of life for Daisy was to ensure that she was allowed to be a little girl and able to do the things she wanted….go to school, spend time with her friends, be with her siblings and her beloved dog Pluto and go shopping…

 Working with the palliative team we ensured that everyone understood that seeing Daisy as a little girl and not a patient and maximising her quality of life was an absolute priority.  We fought hard to get a care package so that we could get some sleep, and be safe in administering the complex regimen that was keeping our little girl alive.

Daisy’s care was so complex that she could only be looked after by specialist nurses, but eventually we were able to have occasional nights when nurses would come to the house as part of a funded continuing care package… Then our family was hit by a bombshell.  My husband Andy was diagnosed with stage 4, incurable colorectal cancer.  He was terminally ill, and it was likely that he would die before Daisy….

 An emergency package of care was put in place for the nights but there were times when Andy was in hospital recovering from chemo or attending oncology appointments and I simple could not be with him because I could not leave Daisy….

 Andy lived for a year after his diagnosis and we focused on making the most of our precious time, despite Daisy’s deteriorating health.

 Andy died at home and a few hours before he died our wonderful hospice opened up their emergency care bed so that the nurses there could look after Daisy so that I could be with my husband as he took his final breaths. 

We were all so devastated when he died, it was a week before Daisy’s eleventh birthday and just before Christmas.  We struggled on, trying to make sense of all. All the while my battle to ensure we had consistent funded care for Daisy continued.


Our community nursing team were understaffed and stretched beyond measure, Daisy was one of the most complex children on their caseload and they simply did not have the time or resources to support me, especially since the time I needed support was at night or the weekends…as all parents and carers of children with multiple medical needs know if anything is going to go wrong it certainly is not going to happen during normal working hours! 

My children became young carers, sitting with their sister while I dashed for a shower, cooking meals for each other, all the while trying to get on with their own lives, have a childhood.

 Time and time again I would be visited by members of the clinical commissioning group looking to review our care package, looking to see where cost savings could be made….I was on my own, widowed and grieving for my husband, supporting my four grieving children and caring for the deteriorating health needs of my youngest child.  I spent my days terrified that my care package would be cut and I would make a fatal mistake in managing Daisy’s complex care which could potentially kill her. 

A year after the first anniversary of Andy’s death we celebrated Daisy’s twelfth birthday and then Christmas.  It was clear that the window was closing and Daisy was able to enjoy less and less time doing the things she loved, she was in pain, she was sad and she was tired. In early January she was admitted to Great Ormond Street hospital, her condition deteriorated very rapidly and she was transferred to intensive care and put on a ventilator.  Her organs were shutting down and she was being overwhelmed with irreversible sepsis.
 

While I was on my own at that time the conversations and planning that I had been able to have with our palliative team meant that I was clear about what I wanted for Daisy in terms of further resuscitation and intervention and what Andy’s wishes would have been.
 

I gathered my children together and we said goodbye to Daisy, telling her to go and dance in the stars with her daddy......it was a medicalised death but it was a good death, we had some control, I knew that I had done everything possible to support Daisy and I knew when it was time to let her go.

 Our palliative nurse liaised with the hospice and a cold mattress was set up on Daisy’s bed at home and we brought our girl home to rest, no longer attached to tubes and monitors, just a little girl at peace in her bed.

 Daisy lived for twelve years but excellent hospice and palliative care support meant that those twelve years were filled with happiness and joy, despite her deteriorating body.  That is what sustains me, a year later. I am one of the lucky ones, I am privileged.  I am educated, middle-class and English is my first language.  I live in an affluent borough of London within easy reach of Great Ormond Street hospital and a first class children’s hospice….yet I had to fight constantly for support.
 

I fought hard to ensure that Daisy was just a little girl, not a patient, not a diagnosis….to do this I learned complex care regimens, I was supported by an excellent hospice and palliative team, I fought to get her the support of a nurse to go to school two days a week, to have funded respite breaks, to have overnight care….so much of my time was spent fighting, it shouldn’t be like this.


Everything I did for Daisy was for the love of her, she was my girl and I wanted her to have a childhood….all I was asking for was the support to be allowed to do this without being brought to my knees in the fight. My fight continues now.  Excellent funded care and support for the families caring for the sickest and most complex children in the UK should be a right, not a privilege.  It should not depend on where you live, or how loud you shout or how well you manage to negotiate the system. It should be there to support and help the thousands of families across the UK like mine so that can enjoy precious time with their child not matter how long or short their childhood.

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