From surviving to thriving: the new care system putting patients' needs first

Sam leaving the intensive care unit for the first time

Sam Bowditch was fit and well, a husband and dad of one, who was self-employed. He was 29 when he was admitted to the intensive care unit in Cardiff and Vale University Health Board (UHB) in late 2020 with a diagnosis of pancreatitis. This condition results in inflammation of the pancreas, leading to damage to the digestive system, the kidneys, and the lungs. Sam required a ventilator, antibiotics, medication to maintain his blood pressure and a form of dialysis to keep his body functioning. The days and weeks that followed were incredibly challenging. Sam was regularly close to death. While he was unconscious, his family, unable to visit as normal because of the pandemic, felt the potential devastating implications to all their futures.

Being admitted to an intensive care unit (ICU) is a harrowing experience for patients and their loved ones. However, for most, this is only the start of a journey with a destination that is not always clear. What lies ahead is, at best, weeks of recovery involving a plethora of healthcare professionals and multiple moves through different areas of healthcare from the ICU to hospital wards and on to home. For many, this journey can take much longer, with patients and their families reporting ongoing issues, both physical and psychological, for months and possibly years after discharge.

The provision of rehabilitation and recovery for these patients, and many others like them, has never been more essential. In 1984, the official journal of the Association of Anaesthetists stated: “The success of intensive care is not to be measured only by the statistics of survival, as though each death were a medical failure. It is to be measured by the quality of lives preserved or restored, and by the dying of those for whom interventions are futile and by the quality of the human relationships involved in each death.” 

I remember those first-time moments… like taking my first swig of lemonade and being able to give my son a thumbs up over FaceTime

Nearly 40 years later, we still strive to achieve this aim, to ensure that we give back the life that has been saved, enabling individuals to not only survive but to thrive. 

Getting rehabilitation right at a national, regional and local level will enable the NHS to achieve the best health outcomes for people admitted to intensive care. And it will ensure that through models of care that are co-produced with clinicians, patients and their loved ones, everyone has the potential to thrive and live their life the way they want and achieve what matters most to them.

Thanks to the efforts of the team within the ICU, multiple specialists, and Sam’s resilience, over several weeks his condition improved. His sedation was reduced and the tube in his mouth was changed to a tracheostomy (a breathing tube into the throat). It was a magical moment for Sam and his family, but in truth it was only the start of their journey. What lay ahead was months of rehabilitation and recovery, which started within the intensive care unit, and is still continuing today. 

“I was involved with many of the teams of medical professionals, physiotherapists, occupational therapists, speech and language therapists, etc… These people became a huge part of my daily routine… Their patience and persistence contributed to the colossal journey of my recovery,” Sam says, adding that he “will be forever grateful for them being part of my journey”.

Cardiff and Vale UHB has co-produced a rehabilitation model with individuals who have lived experience of long-term health conditions, to help make our services more efficient and effective, and to promote collaborative working. Our model builds on the principles of the All-Wales Rehabilitation Framework, placing the individual (and their families and carers) at the centre of everything we do. It is a stratified model, which emphasises enabling individuals to access the appropriate tier of care for their needs and to move seamlessly between tiers based on need. 

This can range from ‘keeping me well’ through self-management guidance, to the more traditional ‘helping me to live well’ where individuals are supported on a one-to-one basis. Through this approach, the correct level of input can be provided at any point of a person’s journey, removing the traditional barriers of geographical location, point of access, and services being governed by a person’s diagnosis rather than their actual needs. 

Sam slowly learnt to walk, to talk, to eat

There is still much work to be done. The Cardiff and Vale UHB rehabilitation model, alongside both NHS England and NHS Wales publications on rehabilitation and reablement services, has placed focus on the need for adequate service provision. However, workforce remains a significant challenge. Sam required input from a huge range of healthcare professionals, which is far from regularly available. Across the UK, the number of allied health professionals working in critical care falls well below national recommendations made by the Intensive Care Society and the Faculty of Intensive Care Medicine. The impact is a lack of provision of vital rehabilitation services across the UK, with certain professions like occupational therapy or psychology not funded at all in many services. 

How can we meet the needs of our patients if those with the expertise are not able to see them, or can only see them so sporadically that the impact will be negligible? The workforce challenge continues along the patients’ journey with poorly resourced rehabilitation services available within hospital wards, and specialist rehabilitation units and in the community.

Furthermore, rehabilitation facilities within NHS establishments continue to be in decline, leaving rehabilitation to occur in inadequate environments with little space, such as by the bedside or even in hospital corridors.  

Through specialist rehabilitation, Sam slowly learnt to walk, to talk, to eat and to care for himself again. Sam, like so many others, remembers the importance of those new ‘firsts’: “I remember those first-time moments… like taking my first swig of lemonade and being able to give my son a thumbs up over FaceTime.”

However, this is not available to all. Even between health boards in NHS Wales, there is variation in service delivery. While Sam’s inpatient stay was fully optimised, he does not feel he received the input at home that he needed. Just 40 miles down the road, Sam would have continued to receive input from therapy staff outreaching from critical care to the community, providing that ongoing support and input. Through this model, patients are beginning to thrive in their own environments with less dependence on primary care and fewer visits to hospital. 

Sam is incredibly grateful for those involved in his recovery, but it has been far from plain sailing. Months of rehabilitation put Sam on the right path, but he has also needed to seek additional support from outside the NHS to get to where he wants to be. 

Survival may be the starting point, but Sam had desires to return to work, to his previous social life and to get back into the sports he loved. Achieving these goals is vital to Sam and his family and is also so important to wider society. In September 2023, two years after his stay in intensive care, Sam was selected to represent Wales to play England in the Physical Disability Rugby League. This is a true testament to Sam’s determination to achieve his new dreams and a great reflection of the input he has received. “Everyone that has been part of my recovery taught me invaluable lessons,” he says. “How to persevere beyond belief but also to be accepting of my new circumstances.”

Sam’s story is incredible. From a shock admission to critical care, to returning home with his family and now representing Wales in sport. This needs to become the norm, not the exception. Surviving is just the beginning. The UK has pockets of excellence in post-hospital ICU rehabilitation, and there is great expertise and dedication from critical care multidisciplinary healthcare professionals. Patients admitted to intensive care need rehabilitation and recovery services that are available when they need them, from ICU and long into the community. These services must be delivered in a way that that ensures the journey is just as important as the destination. 

Authors’ note: We are grateful to Sam Bowditch and his family for their help with this article. It was also supported by Dr Fiona Jenkins (director of therapies and health sciences, Cardiff and Vale UHB), Kim Atkinson (clinical director of allied health professions, Cardiff and Vale UHB), and Kate Tantam, specialist sister for ICU Rehabilitation Team, University Hospitals Plymouth NHS Trust.

A drop in for parliamentarians for a photo opportunity to meet NHS rehabilitation teams and therapy animals from the Community Rehabilitation Alliance will be held on 22 April in the Grimond Room, PCH, 2.30-4pm

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