Why patient voices are essential in helping shape our journey through Coronavirus, and beyond

My request:

During times of great stress on the NHS, I'm appealing to all those in senior leadership roles across Welsh Government, NHS Wales and the University Health Boards to proactively involve patients, their wisdom, their experiences, ideas and views in the step-by-step planning that those in senior leadership roles are tirelessly engaged with in order to lead the country in our journey through and beyond the pandemic.


I am writing this Opinion Piece in my role as a Bevan Advocate.


Bevan Advocates are members of the public – patients, carers, and volunteers – who are passionate about the NHS. They provide insights into the real, lived experiences of health and care in order to help in making our NHS in Wales sustainable and fit for the future.


The Bevan Advocate network is potentially one such patient network that could provide genuine and rapid patient response, input and ideas and do so at a pace to meet the needs of Welsh Government and NHS Wales and Wales as a whole.


I make an offer to be part of coordinating that patient response from the network.


The Challenge

The World Health Organisation and governments worldwide have sent a noticeably clear message since the start of the pandemic in January:


“Most people recover, and fatalities are largely only among those with underlying health conditions.”


While the pandemic is strangely having some positive effects, such as the introduction of universal basic income in some countries, and a drop in air pollution, it is generally also making disadvantaged and vulnerable people even more so.


It is clear that various forms of lockdown and shielding will continue for many months, possibly up to two years until vaccines and treatments are widely available.


The four principles of Prudent Health:

As a Bevan Advocate, I frequently refer to the Principles of Prudent Healthcare, which were developed and refined by the Bevan Commission following consultation. Welsh Government formally adopted these principles as the underpinning philosophy in their 2018 policy document A Healthier Wales: our plan for Health and Social Care.


I have reflected on our current lockdown, shielding and social - isolating measures through the four lenses of the Prudent Principles.


Let me share my thoughts with you:


Achieve health and well-being with the public, patients, and professionals as equal partners through co-production


Those in senior NHS, clinical, medical, scientific, and political leadership roles have had the unenviable and daunting task of creating new ways of living, working, funding, and caring for the whole population at an unbelievable pace, dealing with a totally unknown scenario. What has been achieved in such a short time is impressive and to be applauded.


With increased knowledge, we now understand that moving through and working with our Coronavirus scenario is a marathon, not a sprint.


Therefore, it is essential now I believe to give the patient voice its full volume in these extraordinary times and to really access and incorporate their experience and views; to co-produce the way we move forward with lockdown, with shielding, and how we best continue to care for and treat those with COVID 19 whilst we also support those with chronic illness, ensuring the resumption of much needed treatments and support for cancer and so many other conditions.


Care for those with the greatest health need first, making the most effective use of all skills and resources.


In terms of COVID-19, the organisational and clinical preparations for patients have been extraordinary. The care from all frontline staff, who put their own health and lives at risk, has been nothing short of inspiring! Professional, skilled, dedicated, caring and wonderful.


Further to this, the shielding measure has been about protecting the most vulnerable in an essential, immediate “one size fits all” approach.


Many of us have watched the “Critical: Inside Intensive Care” series on TV and also news reports from COVID 19 Critical Care Units, therefore we have a shared understanding of the impact of the illness on patients and their lives and the demands and impact on all the staff caring for them.


However, our vulnerable patients with cardiovascular, cancer, renal, arthritic, and so many other conditions, feel bereft of support and necessary treatment; being locked away to be kept safe feels like you are a nuisance and have nothing valuable to contribute.


The reality is as patients and members of the public we are a huge resource to call upon with many skills, relevant experiences and networks of many others living with chronic health conditions.


Do only what is needed, no more, no less; and do no harm; and reduce inappropriate variation


Directing efforts at COVID-19 as the priority has, of course, been totally correct. Yet, inadvertently, by doing this, there has been a huge reduction in support for many. The physical and emotional pressures on frontline staff and the emotional pressures on those who are locked down and shielded are also creating harm:

  • increases in domestic violence

  • increased numbers of vulnerable children being referred via safeguarding processes

  • a significant and growing negative impact on the mental health of the population with accompanying self-harming behaviours

  • deterioration in physiological health of those who are shielding and less able to maintain exercise

Doing harm was clearly never the intention in terms of all the immediate decisions that have very sensibly been implemented; far from it. But, many of our approaches to “protecting the NHS and saving lives” are also now unintentionally causing significant harm as outlined above.


Reduce inappropriate variation using evidence-based practices consistently and transparently

Current approaches to lockdown and shielding are proving to be (inadvertently) grossly unfair. They unintentionally have emphasised societal inequalities, leaving:

  • disadvantaged families, many of whom are BAME, with young children confined in small living spaces with no outdoor space, and without the finances to provide healthy family meals let alone to fund iPads for home-schooling their children

  • the elderly in their own homes when they too deserve to enjoy fresh air and sunshine

  • the terminally ill largely home-based, less able to spend as much of their remaining active time that they have with family and friends or to enjoy days out to places they want to visit while they still can

  • parents whose children have serious medical conditions terrified of introducing the virus into their household

  • children and adults of all ages with learning disabilities including ADHD and Autism confined inside for much of the day and without school to attend

  • huge numbers of people of all ages with different health issues confined to being “home alone”; managing chronic illness requires good exercise and mental health and being “home alone” is the antithesis to this

On the other hand, those whose finances are more secure, have larger houses and gardens and a secure income are able to enjoy long walks or cycle rides in the countryside, fresh food on the table or the BBQ in the garden. They have lots of up to date IT equipment to do additional exercise with Joe Wicks, sing in The Great British Chorus with Gareth Malone and participate in online meetings as much as they wish.

Intriguingly, the rural “disadvantage” is turning into an advantage – providing very positive social isolation within a rural location. Soon, the challenges of having necessary medical consultations and avoiding arduous travel to do so, will be addressed as GP and clinician video conferencing facilities are rolled out.


My request

I, like everyone else across Wales and the UK, am hugely grateful for just how much the NHS has achieved against the clock to ensure the provision of expert care for COVID 19 patients. NHS staff are daily working directly with COVID 19 patients and risking their own health and lives as they do so. I cannot thank them enough.


As much as we have needed (and will continue to need) to prioritise COVID 19 and save lives, we now need to look more at reinstating the provision for vulnerable people and those with chronic illnesses. While clinics are ramping up video calls, what are the other areas of support that patients wish and need to be able to access?


I believe very strongly too that we also need to urgently find creative ways of new small steps to amend social isolating and shielding. If it is indeed to take 18 months to arrive back at “normal”, we need to find ways to allow the shielded, the vulnerable, families with young children, the disabled and the elderly to also get out safely into the fresh air, feel the sun on their faces too. To deny fresh air and exercise for 18 months will be hugely damaging in terms of the impact on mental and physical health. Personally, I cannot contemplate that scenario.


As we witness so much transformative change in ways of working, let us not forget the prudent healthcare principles and give the patient voice its full volume in these extraordinary times.


I therefore request the formal involvement of patients and carers in working with health professionals, NHS Wales and Welsh Government to work together and co-produce the steps of our journey through and beyond the pandemic.


Issues on which patient and carer voices (including those from the Bevan Advocates) can really add wisdom, experience and creative thinking include:

  • Finding improved ways of approaching lockdown, isolation, quarantine and shielding which properly address the inequalities of the current system and best support the physical, emotional, and mental health of all

  • Creatively addressing ways of improving the support for those with chronic illnesses, ensuring the best clinical support, while supporting positive emotional and mental health for all and addressing inequalities of access

  • Ensuring that that any phased return addresses greatest needs first and in ways most acceptable to those with the greatest needs

  • Identifying elements from these scenarios that can be included in the long-term transformation of NHS Wales

Becoming a Bevan Advocate:

Bevan Advocates are members of the public – patients, carers, and volunteers - who provide insights into the real, lived experiences of health and care to help to transform the NHS. The Bevan Commission’s programme welcomes new members who are passionate about contributing to health and care and making our NHS in Wales sustainable and fit for the future.


If you are interested in becoming a Bevan Advocate you can find out more here.


Barbara Chidgey

Barbara Chidgey is a Bevan Advocate, a shielded patient, Chair of Daring to Dream (a charitable fund to support the emotional health and well-being of patients), a professional doctoral student in leadership at Cardiff Metropolitan University, Executive Chair of the former Leading Wales Awards, and a former secondary school head teacher


Follow Barbara on Twitter: @LeadinginWales

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