My primary purpose here is, as a patient, to join calls, like those made by the 75 leading health experts to Theresa May on 11th January, for radical solutions to the break-down of our health and care system. It is not a problem for us that can wait for some utopian answer in 2020. Let's accept that we'll die - but avoid the unacceptable shortcut of the sirens' road towards euthanasia, the cheap solution.
As the Chancellor rises to his feet to give his much-anticipated Autumn Statement tomorrow, there will be much jeering and cheering from all sides of the House of Commons. In the detail of the important announcements that will be made on Wednesday there is a danger that one voice won't be heard. The voice of children and young people with life-shortening conditions.
Last Saturday 8th October marked World Hospice and Palliative Care Day, and this year the theme is 'living and dying in pain: it doesn't have to happen' - an important message on an even more important day. It has now been statistically proven that people who receive palliative care can live for longer.
I've been a nurse for nearly 50 years, many of them on the front line in the care of sick children. It's a proud, positive and much loved profession. But as I write today, children's palliative nursing is facing a crisis: the number of children with life-limiting conditions that need care and support is increasing but the number of nursing posts to provide that support is failing to keep apace.
A good death - peaceful, dignified, reflective, compassionate, in the loving embrace of those closest to the dying person - is already a happy end for hundreds of thousands of people across our nation. In making this commitment, we make that promise universal, so that every dying person in England can live in anticipation of a good death.
Whilst realisation of your death was sinking in during those grey, cold January days of 2016, many of us went on with our day jobs. At the beginning of that week I had a discussion with a hospital patient, facing the end of her life. We discussed your death and your music, and it got us talking about numerous weighty subjects, that are not always straightforward to discuss with someone facing their own demise. In fact, your story became a way for us to communicate very openly about death, something many doctors and nurses struggle to introduce as a topic of conversation.
I can't imagine how it must feel to wonder which part of your body might fail on you next, to know that you might not live to the weekend and will never feel the sun on your skin again. Yet, she faces it with a dignity and grace that most of us can't muster when faced with the prospect of a half-hour trip on a weird smelling bus, never mind much else.
I will never regret that our law protected her; preventing her from ending her life when she was vulnerable to despair. Those four years we shared were the most precious gift. Without them, Mum would have missed what she described as some of the richest times in her life and we would have missed understanding just what an amazing person she was.
England has the chance through my Private Member's Bill to improve care. The Bill would require all commissioners to ensure their patient population has access to seven day specialist palliative care services, that patients and their families have a clear point of contact in a crisis, that there is advice available at all times to front line staff caring for dying patients and that such staff have all received core training in good end of life care.