One Cold and Wet Night late in January 2020 (Guest blog)

One Cold and Wet Night late in January 2020
The COVID-19 pandemic in the United Kingdom is part of the worldwide pandemic of coronavirus disease 2019 (COVID-19) caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). On a cold and wet day in January 2020 the UK listened to a short news bulletin that 020COVID-19 had landed in the UK with its first case OMG, wonder how many people thought of the devastating impact it would have?
I remember talking to some friends and saying how bad I was in China but never thought it was coming our way, some six weeks later…
Monday, 23rd March 2020
In a televised address, Boris Johnson announces new strict rules applicable to the entire United Kingdom with the aim to slow the spread of the disease, by reducing transmission of the disease between different households. The British public are instructed that they must stay at home, except for certain "very limited purposes" – shopping for essential items (such as food and medicine); one form of outdoor exercise each day (such as running, walking or cycling), either alone or with others who live in the same household; for any medical need, or to provide care to a vulnerable person; and to travel to and from work where this is "absolutely necessary" and the work in question cannot be done from home.
Thursday, 26th March 2020
However, when these restrictions came into force on 26 March, the statutory instrument for England omitted any limit on the number of exercise sessions. All non-essential shops, libraries, places of worship, playgrounds and outdoor gyms are closed, and police are given powers to enforce the measures, including the use of fines.
Sunday, 29th March 2020
The government will send a letter to 30 million households warning things will "get worse before they get better" and that tighter restrictions could be implemented if necessary. The letter will also be accompanied by a leaflet setting out the government's lockdown rules along with health information. Now the impact on Head & Neck Cancer patients and caregivers start…
Over the coming months our 24/7 Support Line became very busy with both patients and caregivers call with concerns they could not talk to the teams at the hospital as lines were busy or not being answered. Loneliness, frustration, uncertainty, fear, unanswered questions, isolation, eating and drinking problems, the need to talk with someone who understands are just a selection of the topics in the call.
Most calls prior to Covid-19 were between the hours of 22:00 and 6:00 the next day with very few calls through the day as patients had a direct way to contact their health team. 
Monday, 30th March 2020
Then Monday, 30th March started with the first call at 10am, “Can’t contact my nurse, what should I do?” it has just got busier and busier throughout the months going from an average of 10 calls a month prior to Covid-19  now fast track forward to August total calls of 48 during 10:00 to 22:00 and 21 during 22:00 and 5:00.
Monthly International Patient & Caregivers Meetings
We also started our virtual Support Group meeting in April with 42 attendees from the UK and every month increased the number of attendees, with August having 116 attendees from 22 countries including China, Malaysia, South Africa, Australia, USA, UK, Taiwan and many more.
We hold the meeting every second Wednesday of the month starting at 18:30BST and finishing around 21:00 with speakers from around the world including Surgeons, Nurses, Patients, Caregivers, and Industry all talking about Head & Neck Cancer.
Lessons Learned
What have we learnt from the COVID-19 pandemic?
Patient Advocates:
One important thing is the importance of the advocate in supporting, signposting and more importantly an ear for patients and caregivers to off load their concerns, thoughts and worries in a time when they do not have immediate access to their health team.
Health Teams:
Our health teams should look to be better prepared for the future by using patient advocates, support groups and charities within the ‘Pathway’ to a greater use and help them deal with the patients & caregivers in the community waiting, going through or post treatment stages. This would free up time to allow the health team to deal with patients who need to come in or are in hospital.
The NHS Commissioners need to look at the savings, patient experience and improved patient outcomes a service like ours deliver then look to commission the service with agreed deliverables.
The Ask…..
What is the need for the next coming months? Overall, patient advocacy groups are under extreme pressure to deliver a quality service to patients on a 24/7 basis, so support is at the point “when they need it, not when people think it is need it”. Clear that COVID-19 has brought challenges to maintaining funding but at the same time the offered service has increased two-fold.
So, “what is my Ask?” My ask is that we join forces and find collaborations to secure funding for advocacy groups to maintain the level of service patients deserve. We know times are very difficult and challenging for Head & Neck Cancer patients and their Caregivers. And these patients do not have time to wait, they need our support now.

Chris Curtis

Chris Curtis, Head & Neck Cancer Survivor Chief Executive Officer & Founder Honorary Senior Lecturer within...
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