Meet the Team: Sharon

I was delighted to be invited to be involved in this study from both a professional and personal perspective.

I spent the last 30 years of my nursing career working in primary and secondary care, in both oncology and in palliative care. I was constantly frustrated at the lack of any clear and consistent “pathways” for patients and families from oncology to palliative care – as a consequence, so many missed out on the opportunities that good generalist and specialist palliative care can bring.

As a Director of Care in an independent hospice, I lost count of the times when staff reported late referrals for end-of-life care. It was often the case that earlier contact with the services could have made a real difference to the experience of both patient and family.

In my retirement, I have witnessed many of my friends battling to understand the roadmap to support. For example, the husband of one of my close friends had completed radiotherapy and chemotherapy for lung cancer and had four out-of-hours admissions to A & E with breathing difficulties within a 7-week period. At a face-to-face oncology appointment, secured by my friend, she asked “are we moving towards needing palliative care”? And was told “Oh no my dear, we are nowhere near that stage yet – never say die!” She self-referred to the local community Macmillan team, but her husband died on a trolley in a corridor in A&E, just four days after the oncology appointment and before his Macmillan referral could be processed.

With all the developments in oncology, it is less easy to predict the trajectory. I know two individuals who were given a terminal diagnosis and referred to specialist palliative care services, and subsequently offered new therapies and made remarkable improvements. When one of them spoke to me recently, she said that because she had already experienced the benefit of the palliative care service she had “no fears” if she needed that care in the future.

When things go smoothly in the transition towards palliative care, it can be truly life changing. My elderly neighbour decided to discontinue active cancer treatment after discussing her options with her oncologist. When we talked a few days before her death she described the whole process as seamless. A big music lover, she talked of it “like an orchestra, everyone coming in on queue – I feel like an enormous burden has been lifted.” The support over a 4-month period enabled her to receive advice regarding benefits, appropriate symptom management, make adjustments to her living arrangements, and have the time to mend relationships and plan her funeral. She shared with me how “lucky” she felt.

I would like to look to a time when patients, family, and health professionals have a good understanding of what palliative care can provide and that they work together to ensure that it is provided in a timely way, with care and compassion. Importantly, that patients need not be “lucky” to receive it. Palliative care should NOT be a lottery.

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