I thought it had been already a crazy year and then I discover that I am being shielded from Coronavirus (Covid-19)!!!

As I saw things being shut down at the hospital, which over the last nine months had become our second home, I realised (like so many others) that this was going to be serious. Having almost concluded my treatment, I was fortunately squeezed in for my last appointment to remove my Hickman line prior to the official lockdown. What appeared a relatively straightforward procedure undertaken by an excellent nurse, was vital in order to enable me to shield during the lockdown as I no longer required my weekly line flush at the hospital.

On my last visit to the hospital I spoke with the amazing chemotherapy unit staff about what lockdown would mean for current and potentially new patients. I could tell that they were determined to provide essential services to each individual patient for as long as possible. They were already thinking “outside the box” about keeping services running safely, not just for themselves but for the vulnerable patients they care for each day which they were determined to keep open despite an international pandemic. It made me wonder how I would have coped had Covid-19 struck a year ago when I was undergoing my operation and subsequent treatment!!

Whilst people were out stockpiling food and household products (toilet rolls !!!!) to the point of selfishness and stupidity, professionals across the system were preparing, planning and sharing good practice to ensure that people experienced a good death during this pandemic, despite the challenges faced.

High quality integrated End of Life Care services, with options available and advanced planning have always been at the heart of the ADASS End of Life Care Network’s ambition. We all want to see improvements in the quality but also availability of services for people to make informed choices about how their services are delivered on a personal basis. It has to be said that many senior people in Adult Social Care at the beginning of my campaign didn’t believe this subject was a priority, but as we have seen ten years on, during a crisis like the one we are currently experiencing, it is critical to make sure new ways of delivering person centred care at the end of life are embraced.

It is amazing how the Covid-19 response has brought into focus the importance of integrated working across NHS, Public Health, Voluntary Sector, Education and Social Care, something I have been campaigning about for at least the last 10 years! Such integrated working puts people first and recognises parity between health and social. The key question is whether this will now finally be addressed and embraced as we move into the New Normal. Perhaps one legacy of this crisis will be free access to high quality health and social care services, something that is long overdue.

The National NHSE&NHSI Team, the Ambitions Partners, the EOLC Practitioners Network and ADASS EOLC Network have all been working hard during this crisis to develop guidance and ensure high quality service provision is maintained throughout whilst capturing the learning that will be shared at a later date.

It is heart-breaking to witness in the media the number of those wo have died during the pandemic and my heart goes out to all their loved ones during these unprecedented times. Many tears have been shed by many during this time and as during my treatment I personally carried around my now very rare toilet roll family members knew the level of pain I was experiencing by observing, as my wife said “one sheet a sniffle two sheets a blub”. I have no doubt that there has been a lot of blubbering going on and therefore lots of toilet paper used for a new purpose so why then as we emerge from this time in 2020 shouldn’t we embrace new relationships, partnerships and practices as the New Normal. Let’s not re-tie the red tape but rather adapt and build on the trust and new relationships that has emerged across professional boundaries and within the spirit of good caring principles.

It’s my personal hope and prayer that delays over the last four months in diagnosis and treatment are not critical in the outcomes of those affected over this time as systems begin to resume under the banner of the “New Normal”.