To me you are like a favourite aunt, cantankerous, imperfect but full of love and always there when you need them.
I truly believe that without the NHS we would not have had twelve wonderful years with Daisy.
NHS doctors and nurses cared for me when I was so poorly and pregnant with her. She was scanned and monitored and eventually the decision was made to deliver her by caesarian section.
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| first cuddle with Daisy |
When she was found to be partially blind the NHS gave her glasses, when we tried to help her walk the NHS gave her special shoes and splints. When her ability to walk failed the NHS gave her a wheelchair. When we found she could not swallow the NHS gave her special prescription milk and pumps. When her intestinal system failed and she became totally unfeedable the NHS gave her intravenous nutrition. They trained us to administer it and provided the equipment and support to put up a daily drip of fluids via a line in her chest, perfectly formulated to her needs, for every day of her life.
When she developed complex epilepsy the NHS gave us the drugs needed to bring her around when she was unconcious after cluster seizures. When her pain went off the scale the NHS gave us a pharmacy of narcotics to help manage it. When she needed surgery the NHS provided intensive care beds, specialist nursing and therapy support to get her back home as soon as possible.
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| Daisy was midway through a one year hospital stay when this photo was taken |
When my boys' mental health was impacted by the life we were living with Daisy the NHS gave them support.
When I needed someone to talk to, our NHS GP was there.
When we needed to prepare for Daisy's end of life, the NHS palliative care services carefully and compassionately helped us plan.
When she could no longer go on and succumbed to irreversible sepsis, NHS intensivists worked on her through the night, she was transferred to a highly specialist intensive care bed and when the time came we were supported by doctors and nurses as we made the final, heartbreaking decision to let Daisy go.
As Theo and I sat with Daisy as she took her last breath, an NHS chaplain sat with Xanthe and Jules so that they would not be on their own during this time.
And even after she died, NHS nurses helped me wash Daisy's little body, they made prints of her hands and cut a lock of her hair. They dealt with all of the arrangements with the hospice and undertaker.
Daisy's care, the best that was available for her, cost the NHS thousands, probably close on a million over the years. Her care was specialist, her drugs were expensive, her surgery was complex, her hospital stays were long, her therapies essential and life-enhancing.
We did not pay a penny for all of this. All of this complex care. I was able to give up work to care for her without worrying about how I was going to pay her medical bills.
As Daisy's condition was so rare we got to know other families all over the world who also had a child with the same gene mutation. Although we knew we were lucky, it was only when talking to other friends in our support group that we really appreciated quite how lucky we were. We heard stories of crowd funding for surgeries, of parents working long hours to earn extra cash to pay medical bills, of parents forgoing medical insurance because they could not afford to insure themselves and their children.
It was an accident of birth that Daisy landed in our lives, in the UK with access to our fine healthcare system. I truly believe that without the NHS Daisy would not have lived for so long and also that I would not be mentally and physically able to cope with the stress that life has thrown at us. At least I only had to worry about our family, not how we were going to pay for our medical care.
Of course times have changed. Let's face it if I had been pregnant with Daisy 70 years ago then I would not have even survived the severe polyhydroamnios and obstetric cholestasis let along delivered Daisy safely. Children who would not have survived the odds are now doing so, Daisy is a prime example. Technology and medical science means that children like Daisy can live full, if shortened lives. But the financial cost is huge and the NHS model as it was first created is no longer relevant for our new world.
The buildings of our quirky local hospital are crumbling, literally held together with gaffer tape, wards are busy, waiting times long. The staff certainly don't go to work for the money.
I guess there needs to be change, but whatever the changes I hope that the essence, the spirit of the NHS will always remain.
I love our imperfect, beautiful NHS. It's the thing that makes me proudest to be British at a time when it can be hard to find reasons to be proud. The NHS gave me 12 years with my girl.
Today I send my grateful thanks to every Doctor, Surgeon, Nurse, Specialist, Therapist, Administrator, Manager, Professional, Support Worker, Carer, Healthcare assistant, porter, housekeeper...the list is endless, working for the NHS who was there for my girl from cradle to grave. You will always have my total and utter admiration and thanks for everything you have done for my family.
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