This website is intended for healthcare professionals only.
Take a look at a selection of our recent media coverage:
16th April 2025
Bacterial colonisation is an important predictor of exacerbation in alpha-1 antitrypsin deficiency (AATD)-related chronic obstructive pulmonary disease (COPD) and could indicate the need for additional targeted therapy, a recent study has reported.
AATD predisposes individuals to lung damage, heightening their susceptibility to chronic bacterial colonisation and recurrent respiratory exacerbations.
This first-of-its-kind study aimed to determine the prevalence of potentially pathogenic microorganisms in the sputum of AATD-COPD patients – including those with bronchiectasis – and assess how colonisation affects exacerbation risk.
Sputum was collected from patients with AATD-related COPD during stable and exacerbation periods, then cultured for respiratory pathogens. Mild and severe deficiency genotypes were included to explore any differences in pathogen frequency related to AAT level or genotype.
A total of 995 sputum samples from 91 patients were analysed and 29 (32%) had radiological bronchiectasis.
In stable AATD disease, sputum positivity for potentially pathogenic microorganisms was higher in those with bronchiectasis (72.8%) compared to those without (55.5%). A similar finding was observed during exacerbations at 87.9 % versus 66.4 %.
During exacerbations, the median total bacterial load increased in both groups, and Pseudomonas species predominated in bronchiectasis. Isolation of Pseudomonas, S. aureus, M. catarrhalis, or ‘other’ pathogens in the stable state were independently associated with increased odds of future exacerbation, whereas H. influenzae, S. pneumoniae, presence of bronchiectasis, or current smoking were not.
Clinicians should be alert to these bacterial profiles in AATD-COPD patients, especially those with bronchiectasis, as repeated exacerbations can accelerate lung damage.
Indeed, the study authors advised that ‘identifying AATD subjects with bacterial colonisation may establish the need for additional treatment strategies’ and that such patients ‘could benefit from additional, targeted therapy’ to optimise their disease management.
The authors acknowledged a study limitation of a lack of recent antibiotic usage patient data and bacterial strain-level analysis, underscoring the need for deeper microbiological investigations. Clarifying these relationships could further guide infection management and ultimately enhance clinical outcomes for this high-risk population.
Considering future research to build on this study, the study authors suggested exploring the impact of bacterial colonisation on lung function, inflammation and quality of life, as well as using advanced molecular techniques to map the lung microbiome.
An ongoing investigation by this group is also examining how ‘triple therapy inhalers’ and azithromycin influence bacterial colonisation in this patient cohort.
Reference
Spittle DA et al. Bacterial colonisation doubles the risk of exacerbation in alpha-1 antitrypsin deficiency. Respir Med. 2025 Apr-May;240:108025.
Understanding the factors contributing to child deaths is essential not only for supporting bereaved families but also driving systemic improvements in prevention and care. While many countries have implemented child death review (CDR) processes, evidence on effectively engaging parents in a meaningful way remains limited. Here, Dr Joanna Garstang outlines the development of a toolkit to facilitate parental involvement and the recommendations for support that all bereaved parents should receive from healthcare professionals as part of CDR.
Losing a child is devastating for parents as it disrupts the natural order of life.1 In England, approximately 3,500 children die before their 18th birthday each year, with many of these deaths expected due to chronic illnesses or genetic conditions, while others result from acute illnesses.2
Although, in these cases, the diagnosis is often established before the child dies, parents may still have questions about their child’s care. Understanding why their child died is important for grieving parents.3
Child death review (CDR) aims to understand the full reasons for each child’s death, learning from these insights to prevent future deaths alongside supporting families. CDR programmes vary internationally, with most focusing on sudden deaths, but the American Academy of Paediatrics has highlighted the benefit of reviewing deaths of children with chronic illness and disability.4
In England, CDR is mandatory for all child deaths.5 Multiagency holistic CDR meetings, which play a crucial role in the review, take place several weeks after the death and are led by the healthcare Trust responsible for the child’s care. While the meetings are attended solely by professionals, parents should be informed about CDR and allowed to provide feedback and receive updates on the outcomes.
There have been several NHS enquiries into avoidable infant and child deaths that have highlighted clinicians’ failure to listen to parents’ concerns, adequately investigate deaths and communicate effectively with families.6–9 Engaging with families is vital, as their unique knowledge of their child’s care can provide important contributions to the learning process following a death.
All bereaved families should have a key worker assigned to serve as the primary point of contact between parents and the CDR process, guiding them towards bereavement support and other essential services.
Before our project, there was no detailed guidance to facilitate parents’ involvement in CDR. Therefore, we aimed to collaborate with bereaved parents and CDR professionals to co-design a best-practice toolkit that supports parental engagement in CDR.10
We used an experience-based, co-design methodology.11 Our goal was to create a toolkit that addressed parents’ needs while remaining practical and considering the realities of service delivery.
We interviewed 23 bereaved parents from across England, whose children had died following a hospital admission, in a hospice or at home with palliative care between 2021 and 2022. We also interviewed 21 multidisciplinary healthcare professionals involved in CDR from three hospitals and two community palliative care services. We conducted a series of online meetings for parents and professionals to review the interview findings, establish priorities for action and develop the toolkit.
The analysis of the parents’ interviews identified four key experiences and emotional touchpoints. These were the encounters with professionals that had the most significant impact on their CDR journeys.
The first touchpoint occurred when parents became aware of CDR. It was crucial how CDR was explained to parents. Some only read about it in leaflets, while others received telephone calls from professionals they had never spoken with before.
The second touchpoint involved being asked for input. Parents found it very challenging to provide feedback or ask questions for the CDR meeting, as there was no format or structure for doing so.
The third touchpoint involved the date of the CDR meeting. Parents did not necessarily know the date on which the CDR meeting was to be held. If they did, this often led to increased anxiety leading up to it and distress if the meeting needed to be postponed. This situation was compounded by poor communication.
The fourth touchpoint was receiving feedback after the CDR meeting. Few parents received feedback, but most desired it. Effective communication and bereavement support from key workers were essential to ensuring parents could engage in CDR and to facilitate better care.
The toolkit was designed primarily for key workers, as they have the most contact with bereaved families. We also found that many key workers, while providing good bereavement support, did not fully understand their role in helping parents contribute to CDR.
The toolkit includes training videos, a standardised pathway detailing suggested contacts and timings with bereaved families, template letters to support communication, a feedback form, a contact tracker form, an easy-read leaflet and an animation explaining the importance of involving parents.
Although it was developed for use with the English CDR system, the tools could also support parental involvement in CDR in other nations, as there is limited practice and guidance in this area. The feedback form could be easily utilised to enhance communication with relatives following the deaths of patients of any age.
The pathway for engaging with parents outlines minimal suggested contacts and primarily emphasises communication regarding CDR. Parents were eager that they should not leave the hospital after their child had died without information about their key worker, and that all families should be contacted by their key worker within the first two days following the death.
Some families may need much more support than that described in the pathway, but also other families may not wish to be involved in CDR at all or continue contact with key workers.
The CDR toolkit offers comprehensive and systematic recommendations for healthcare professionals, assuring parents that those providing support are sufficiently trained and equipped to assist them during their most challenging moments.
The toolkit still needs further evaluation but has the potential to lead to greater learning from deaths and help prevent future child deaths. It is freely available to download from the National Child Mortality Database website.
Joanna Garstang MBChB MRCPCH PhD
Clinical associate professor of child protection at the University of Birmingham, and consultant community paediatrician, Birmingham Community Healthcare NHS Trust, UK
14th April 2025
Individuals with chronic conditions are more inclined to attribute bowel habit changes to medication side effects rather than suspecting colorectal cancer despite it being a red flag, a new study has found.
Although screening practices and early diagnosis have improved, many colorectal cancer cases are diagnosed at an advanced stage, highlighting that symptoms can be challenging to recognise.
In fact, for patients with chronic conditions, overlapping symptoms or medication side effects may obscure warning signs. With multimorbidity and polypharmacy rising in older adults – those already at a higher risk of cancer – understanding symptom interpretation is increasingly important.
This study therefore examined whether people with common chronic conditions are more likely to attribute new-onset colorectal cancer symptoms to their existing medications.
The researchers conducted an online vignette survey among UK adults aged 50 and over, to explore how chronic conditions influence the attribution of colorectal cancer symptoms. Participants reviewed two symptom scenarios of new-onset rectal bleeding and change in bowel habit followed by questions on symptom attribution.
Responses from 1,287 participants were analysed, most of whom were women (61%) aged between 50 and 59 years (62%), with common conditions including obesity (31%), type 2 diabetes (25%), hypertension (25%) and arthritis (22%).
Participants with type 2 diabetes, obesity or arthritis were more likely to attribute changes in bowel habits to their medications, with 7-8% in these groups compared to 2-3% without these conditions.
Patients with diabetes had a two-fold higher likelihood of attributing change in bowel habit to medications, compared to those without the condition.
No chronic condition was associated with attributing rectal bleeding to medications.
The researchers concluded that patients with common chronic conditions have a higher likelihood of attributing change in bowel habit to medications rather than colorectal cancer, and advised clinicians to be aware of this ‘alternative explanation’ bias.
They noted that their findings highlighted the need for clinicians to inform patients with chronic conditions of the overlap between medication side effects and potential cancer symptoms.
‘Patients should be encouraged to discuss any new or unusual symptoms promptly with their healthcare provider,’ they said.
Recognising the limitation of not having data on the specific treatments each patient was receiving, the researchers said future research should address this.
They added that future work should also explore the interplay between medications, symptom attribution and help-seeking behaviour using longitudinal and interdisciplinary approaches, which could determine causal relationships.
Such research would support the development of targeted communication strategies and diagnostic tools for older patients with multimorbidity, they concluded.
Reference
Ricciardi GE et al. Attribution of colorectal cancer symptoms to medications for pre-existing chronic conditions: a secondary analysis of a vignette study in England. Journal of Public Health. 2025;, fdaf014.
Idiopathic pulmonary fibrosis (IPF) is the most prevalent type of progressive interstitial lung disease, characterised by irreversible fibrosis and a poor long-term prognosis. Dr Ahmed Fahim discusses his work on the UK IPF Registry, which has collected real-world data on patients diagnosed with IPF, and how these findings will enhance understanding and promote advances in the clinical management of this challenging condition.
The British Thoracic Society UK Idiopathic Pulmonary Fibrosis (IPF) Registry is a national, multicentre observational database collecting prospective and retrospective data from patients treated in secondary and tertiary care settings. It was created in 2013 to gather information on clinical features, treatment options and patient outcomes and was expanded in 2023 to include any interstitial lung disease (ILD) with evidence of fibrosis.
It is the largest registry of its kind in a single country, providing a decade’s worth of data on trends in diagnosis and management of IPF in the UK covering the period from 2013 to 2023. Over 5,000 cases were included, with the majority being males (78%) and an average age of 74 years. Two-thirds were ex-smokers, and more than three-quarters had at least one comorbidity. The most common comorbidities were hypertension and ischaemic heart disease, followed by diabetes and hiatus hernia.
The diagnosis of IPF was confirmed after a multidisciplinary team (MDT) discussion among specialists in 93% of cases. We observed a trend toward a decrease in the proportion of patients requiring lung biopsies over the 10-year period, highlighting the crucial role of high-resolution computed tomography (HRCT) scans in the diagnostic algorithm. Additionally, the use of antifibrotic therapies increased from 36% in 2013 to 56% in 2023, reflecting changes in the guidelines for IPF management in the UK.
Our analyses urge the need for rapid expansion of the workforce involved in managing IPF and consider increasing the uptake of clinical trial recruitment in this disease where the quest for a cure is ongoing.
The findings emphasise the importance of diagnosing IPF following MDT discussions and highlight the necessity of referring these patients to specialist ILD centres at the earliest opportunity, enabling the prompt initiation of antifibrotic therapy.
Furthermore, the findings underscore the need to consider the diagnosis earlier, as more than a third of patients experienced symptoms for over two years before receiving a diagnosis and being referred for specialist care.
Therefore, it is crucial to enhance awareness and disease recognition for IPF at the primary care level and within the public domain, encouraging individuals to seek medical advice promptly to prevent significant delays in diagnosis and appropriate treatment.
Many patients are diagnosed with airway disease or heart failure when the underlying condition is IPF, which leads to delays in referring patients to specialist centres in a timely manner.
We must invest in raising awareness of IPF in primary care and promote face-to-face reviews of patients with symptoms of cough and breathlessness. If they exhibit typical ‘Velcro crackles’ during lung auscultation, it should prompt an HRCT scan to diagnose fibrotic lung disease as early as possible.
Close collaboration between primary care physicians and specialist centres could offer immense benefits in reducing diagnostic delays and developing pathways for urgent outpatient reviews of suspected IPF patients, similar to the fast-tracking of cancer patients, as the prognosis for IPF is akin to that of cancer.
The advancements in HRCT have led to more accurate diagnoses of IPF, resulting in less invasive procedures and a decline in the proportion of lung biopsies over time. We have observed that most IPF patients are discussed in MDT meetings, and the expertise of the MDT is crucial in determining whether the radiological pattern of definite and probable usual interstitial pneumonia (UIP) supports the diagnosis of IPF, thereby eliminating the need for surgical lung biopsy.
International guidelines for IPF strongly advise against surgical biopsy when a definite UIP pattern is present. Histological confirmation is not required for cases with a probable UIP pattern. Some patients with an indeterminate pattern may benefit from a bronchoalveolar lavage differential cell count. The gold standard for diagnosing IPF involves an ILD MDT discussion, which follows a thorough clinical assessment and is supported by laboratory and physiological data.
The management of associated comorbidities is crucial, as treatment with antifibrotics requires careful consideration to balance the adverse effect profile and drug interactions in the presence of comorbidities. It is also essential to evaluate the impact of comorbid conditions on IPF, such as gastro-oesophageal reflux, which can contribute to refractory cough in this patient cohort. Furthermore, managing pulmonary hypertension and cardiac failure is significant for the outcomes and quality of life of these patients.
MDTs are essential for diagnosing IPF and recommending appropriate management plans for patients with life-limiting diseases. All members of the MDT make significant contributions to this management, including pulmonologists, radiologists, pathologists (when a lung biopsy is performed), rheumatologists, specialist ILD nurses, physiotherapists and pharmacists.
In advanced cases, close collaboration with the lung transplant team and the palliative care team is crucial to ensuring high-quality care for these patients. Unfortunately, the number of patients suitable for lung transplantation is limited due to advanced age and associated comorbidities.
Therefore, it is essential to seek an opinion from a lung transplant centre at the earliest opportunity when dealing with moderate to severe disease. ILD centres should also establish close connections with the nearest transplant centre and palliative care teams. This approach will promote holistic care in IPF, where treatment options are limited, and the disease is progressive.
All healthcare professionals involved in the assessment and management of IPF patients – whether in outpatient settings or acute medical environments – should receive updates on the latest management guidelines for IPF. These guidelines should include indications for antifibrotic therapies, management of comorbidities, drug interactions, effective symptom control, especially for intractable cough and dyspnoea, and palliative care.
Investment in educational resources should occur at both local and regional levels, along with workforce expansion to increase specialist nursing teams for ILD. Furthermore, healthcare professionals who provide support – including physiotherapists, pharmacists and psychological services – should be included to enhance the quality of care.
Regional specialist ILD centres can significantly upskill referral centres, ensuring many patients receive care locally without travelling long distances. Additionally, patient support groups should be established, similar to those in England at each regional location served by specialist ILD centres.
Registries play a crucial role in understanding disease behaviour and management changes over time in real-world settings. Therefore, we must utilise the data captured in these registries to inform future research, as it can help answer questions both prospectively and retrospectively.
Research into developing new therapies that could potentially halt fibrosis and promote disease stability is much needed, as we currently lack pharmacological treatments that can stop or reverse scarring or fibrosis.
We are likely to witness personalised therapies based on genetic profiles and multimodality treatments targeting multiple molecular pathways to enhance clinical outcomes and survival in this devastating disease.
It is essential to consider adaptive platform trials in IPF to evaluate the efficacy of various pharmacological and non-pharmacological interventions simultaneously and promptly, ensuring that the treatment landscape evolves rapidly in the near future.
Moreover, managing comorbid conditions such as pulmonary hypertension and cardiovascular diseases – and understanding their impact on clinical outcomes and survival – will be crucial for future research.
Ahmed Fahim MD FRCP (UK) MRCP (Resp Med)
Consultant respiratory physician, New Cross Hospital, The Royal Wolverhampton NHS Trust, Wolverhampton, UK
11th April 2025
The relationship between hospital Trusts and integrated care boards has lacked clarity and, with an increasing push towards providing more care closer to home and the demise of NHS England, much is dependant on how the system and organisations can work to actually achieve this transformation. Kathy Oxtoby investigates the tensions and collaborations.
It is almost three years since the formalisation of integrated care boards (ICBs) under the Health and Care Act 2022 – time enough for relationships to have been building and developing between hospitals and ICBs. Time also for issues with those relationships to have emerged.
In his Independent Investigation of the National Health Service in England in September 2024, Lord Darzi highlighted tensions and duplications between trusts and ICBs.
‘There are significant implementation challenges for the 2022 Act. The function and authority of ICBs remains unclear in some important respects. The 2023 Hewitt Review was unable to clearly define the relationship between providers and ICBs, and the ambiguity persists,’ it stated.
One of the reasons that ‘ambiguity’ exists could be because relationships between hospital trusts and ICBs are still developing.
One of the roles of ICBs is to bring together the providers within its area and to arrange the provision of NHS care. ‘Trusts provide that care. And that’s the core of the relationship between trusts and ICBs,’ says David Williams, head of policy and strategy at NHS Providers.
Then there are the responsibilities of NHS organisations, including ICBs and hospital trusts, as part of the wider system.
The 2022 Act places ‘a triple aim duty on NHS trusts, foundation trusts, ICBs, and NHS England’, says Sarah Walter, director of the integrated care system (ICS) network at NHS Confederation.
She says this duty requires those NHS bodies that commission and provide services to consider the wider effect of their decisions on their population’s health and wellbeing, including inequalities, the quality of services provided, and the sustainable resources.
This relates not only to separate statutory entities, but also other relevant bodies. ‘It’s not just about your own organisation and the impact you’re having – it’s considering the impact that you have across the wider system,’ says Ms Walter. ‘Those duties help to shift the balance at all parts of the system towards collaborative working.’
Acute trusts have a statutory requirement to consider their impact across the wider system and they are also required to be part of a provider collaborative, which often operate at ICS scale or across multiple ICSs.
Ms Walter says ICBs will have ‘a relationship with their trusts through their commissioning function. But the relationship is not limited to this’.
Many acute hospital chief executives will also sit on the ICB board and be part of the decision-making process about the system’s strategy and priorities and are there to represent trusts across that system more broadly, rather than to pursue the specific interests of their organisation.
And as stewards of their ICS, ICBs have a role in convening the system as a whole, in supporting problem solving, and in looking at system performance.
ICBs and trusts have shared aims, says Ms Walter. They have four core purposes, which relate to improving the health of their population, reducing inequalities, improving productivity and value for money, and enhancing socioeconomic development for their area. ‘Those are the aims of the ICS, but they apply just as much to the different partners within the system, including the trusts.’
Each ICS will have a five-year strategy that has been set following engagement and discussion with all system partners, including trust leaders, which will set out their ambitions for their specific population and the areas they want to prioritise. ‘So, there should be a high degree of alignment for what the ICSs and the ICBs are seeking to do, and the role of the trust in helping to deliver that,’ says Ms Walter.
However, the plans contained within these strategies are likely to be under significant pressure given the recent call for 50% cuts to the ICB workforce.
The relationship between hospital trusts and ICBs is ‘evolving’, says Chris Naylor, senior fellow at The King’s Fund.
The way the NHS has been run for 30 years ‘has encouraged hospital trusts to focus on their own organisational performance, provision of good quality care within their hospital, growing their market share and ensuring that they remain financially viable. So, it’s an “organisation first” paradigm,’ he says.
‘We’re shifting to a system focus, where hospital leaders are still being asked to run their own ship well, but also to take part in the wider system they are operating in and to take responsibility for the performance and sustainability of that wider system,’ he says.
‘What hospital leaders are being told now is that if you’re providing great services in your local hospital, but down the road there’s a hospital that’s really struggling and providing poor care, that’s not a sustainable situation and not something you should be turning your back on. As a partner in the system, you should be involved in thinking about that broader system.
‘We’re now working in a very different world. But it takes time for behaviours and cultures to change,’ he adds.
The King’s Fund has been doing research looking at how hospital trusts are working with ICBs and ‘it’s a mixed picture’, says Mr Naylor.
‘We do see some evidence of “system focused behaviours” taking root, but we also see a persistence of “organisation first” behaviours’, for example neighbouring hospital trusts competing against each other to attract workforce.’
With budgets ‘under so much pressure it does make some of this system working harder – we see protectionism around budgets, and competition for staff’, he says.
‘Some of the old behaviours are still going on. We’re moving to a different paradigm, but we’re not fully there yet.’
How hospital trusts describe their relationship with ICBs is ‘very variable’, says Mr Naylor. ‘There are parts of the country where there are constructive relationships between hospitals and ICBs, and others where that relationship is still maturing.’
He says The King’s Fund hears that trust leaders are being asked to attend all kinds of system level boards and committees, ‘and there is sometimes a degree of frustration about “is that the best use of my time?” and “are these conversations we’re having leading to action?”’.
Duplication between the Department of Health and Social Care (DHSC) and NHS England was cited as key reason for abolishing it, by Prime Minister Sir Keir Starmer when announcing the move.
At the lower levels of the NHS system – between NHS England and ICBs and trusts and ICBs – duplication is also a target of changes in the NHS.
Indeed the new head of NHS England, Sir James Mackey, has written to ICBs asking them to reduce duplication by looking at assurance and regulatory functions, wider performance management and communications and engagement functions.
Successive reports highlighted these various duplications. In his independent investigation, Lord Darzi highlighted the ‘duplications of functions between ICBs and providers, such as in infection prevention and control, where trust boards should be held accountable’, it stated, calling for, ‘more consistency’ and ‘standardisation’ in the way ICBs are organised.
On matters of operational performance, ‘trusts are answerable to NHS England – their statutory regulator as set out in the 2022 Act. As their commissioners, ICBs have a legitimate interest in trusts’ performance, but they have been positioned by NHS England as being expected to do the day-to-day performance management as well, which is a different thing’, says Mr Williams.
As a trust, this meant being answerable to two sets of people for basically the same thing, ‘which has been duplicative’, he says.
Duplication had also been highlighted by NHS Providers Regulation and Oversight survey 2024, which found that while people were enthusiastic about system working they felt ICBs had been put in a position of duplicating NHS England’s work.
The new NHS Improvement and Assurance Framework, published by NHS England at the end of March, provides greater clarity on how systems and trusts performance will be assessed.
NHS Providers welcomed ‘The shift in the role and responsibility of ICBs towards strategic commissioning and away from provider oversight’ which had been an ‘added burden’ creating ‘duplication and confusion, and undermining their role as system leaders and partners’.
It replaces the oversight framework, and it is going out to consultation and testing during the first quarter of 2025/26, ahead of final publication and formal implementation in July.
Under the framework, every ICB and provider will be allocated a ‘segment’ score from one to five to indicate level of delivery. One will be high performing, four poorly performing and five to indicate intensive support needed.
Individual organisations will be measured against metrics based on their responsibilities. But ICB scores will be system-adjusted, using system level metrics that will assess performance against national priorities.
Provider scores will also include a separate capability rating based on the extent to which they are collaborating.
Organisations that are in financial difficulty will face a cap on the score they can achieve, with those in deficit limited to a three.
In response to the framework, Ms Walter, raised concerns that ‘ICBs are to be held accountable for all the organisations in their system while providers are not held to account for the part they have to play in system performance. This calls into question the ability of systems to achieve the three shifts’.
She added: ‘Given that many of the intractable issues leading to poor performance are often system issues that can require partnership working to solve, we would want a long-term commitment to system – not just organisational – oversight. Otherwise, this could undermine the positive work undertaken so far to support greater integration across services.’
Ms Walter says there is a higher degree of consensus around the need for the shift out of hospital into the community, and that many services could be provided effectively closer to home and in community settings.
Trusts are ‘open to supporting out of hospital clinics’, and many are also now integrated, and cover a range of different types of services, such as acute, community and primary care, she says.
However, while hospital trusts can be supportive of out of hospital clinics and this move of care into the community ‘in principle’, there are ‘all kinds of practical issues that can get in the way of putting this into practice’, says Mr Naylor.
For example, hospital finances ‘are complicated and hard to disentangle, with all kinds of interdependencies between different services within the hospital’, he says. There can be cross subsidisation, with one part of the hospital depending financially on another part of the hospital.
‘The argument we sometimes hear from hospital leaders is that because of those interdependencies across the hospital: “if you take out some of our activity it puts the rest of the hospital’s work in jeopardy”.’
There are, however, ‘positive examples’ of ICBs and trusts working together, says Mr Naylor. For instance, in some areas, ICBs are helping to scale up a successful initiative that has gone on in one trust and spreading it across the whole system.
‘There are also examples of ICSs helping different hospital trusts and other providers within an area to build a sense of shared purpose,’ says Mr Naylor.
‘One of the roles ICBs can play within a system is to be a facilitator between all of the different providers and help them to understand each other better, and to make sure they are pulling in the same direction.’
So, how achievable is integration and the shift out of hospital?
‘Improvement is always possible, and the models of care can change quite a lot,’ says Mr Williams.
For instance, now there are virtual wards where people are receiving specialist care in the community, where once they would have received care in hospital, he says.
Another example is ‘urgent community response’ – getting urgent care to people in the community, rapidly – which did not exist on a large scale a few years ago.
These examples demonstrate that it is ‘possible to bring in quite radical changes to how people are treated within a relatively short space of time’, he says.
‘We’ve seen a lot of progress in recent years towards integrating of services, but there’s clearly still a long way to go. Integrating is as much about cultural change as it is about reforming structures, so it takes sustained commitment over time,’ says Ms Walter.
‘Trusts will play a key role alongside place-based partnerships and neighbourhood teams in supporting the shift towards care closer to home, but it’s certainly not straight forward.’
The NHS Confederation’s state of ICSs survey 2023/24, revealed that while over 90% of ICS leaders surveyed are committed to shifting resource to allow more people to access care closer to home, ‘they are struggling to match that ambition due to financial constraints’, says Ms Walter.
Integration has been a long-term aim. But it’s now that the Government has put delivering care closer to home at the heart of its agenda to reform the NHS.
However, NHS Confederation research shows that with the current environment, where there is a focus on acute hospitals dealing with elective care backlogs, financial deficits and operational pressures, ‘there is a risk that we continue to be locked into a cycle of short-termism, says Ms Walter.
‘It’s important that the Government demonstrates its commitment to moving care closer to home and is able to move from the policy rhetoric, into making it happen.’
Some specific areas where the NHS Confederation believes change would help include ‘ensuring that oversight moves from being focused purely on short term pressures, which are often more acute focused, towards something more holistic, including areas like access and prevention’, she says.
It is also worth considering ‘how we might develop and implement some kind of measure, which enables us to see whether that shift from acute to community is happening in reality’.
Mr Naylor says integration and the shift out of hospital is ‘achievable, but we need a total change in focus across the system’.
‘We need more leadership focus on primary and community health services and social care, and more of a focus on implementation – the “how” of change not just the “what” – tackling those knotty practical issues.
‘All of the government policies – workforce strategies, performance management frameworks, the financial architecture – have to be aligned to the vision in order to make it happen.’
And the way the demographics are changing, including the growing older population, makes integrated care ‘more important than ever’, says Mr Naylor.
To ICB leaders, on achieving closer integration and partnership working Mr Naylor says: ‘It’s about building mutual understanding and investing in relationships with counterparts in hospital trusts, so that you build that strong sense of shared purpose, create a climate of trust, and where there is friction or conflict, you’re able to surface that and manage it quickly and constructively.’
Ms Walter says ICBs and trusts will be ‘working hand in glove to implement change’. ‘There are some areas of complexity to work through, but they’re aligned in their overall ambitions for the impact they are seeking to have on their population.’
ICBs and trusts can expect to work together more on initiatives that bring care out of hospitals and into communities. In his speech at the NHS Providers annual conference last November, Wes Streeting said he wanted ICBs to ‘focus on their job as strategic commissioners and be responsible for one big thing: the development of a new neighbourhood health service’. ‘It will focus on building up community and primary care services with the explicit aim of keeping patients healthy and out of hospital, with care closer to home and in the home.’
Mr Williams says in order for that to happen, it will involve ‘a different way of working between ICBs and providers’.
‘It might mean ICBs being more strategic and less involved in the day-to-day, and therefore providers overseeing more of the day-to-day delivery, and providers in primary, community and secondary care working together in a much more integrated way than they typically do at the moment,’ he says.
‘We now need to work out, as an entire system, how to make that real, rapidly, everywhere. That’s an important task for ICBs and providers to work on together.’
A version of this article was originally published by our sister publication Healthcare Leader.
10th April 2025
With cardiovascular disease and mild cognitive impairment increasingly recognised as interconnected conditions, the DORIAN GRAY project aims to bridge the gap between cardiology and neurology through an innovative, artificial intelligence-driven approach. Dr Ivana Galinovic discusses how this groundbreaking initiative leverages digital twin models, real-world data and avatar-based exergaming to revolutionise risk assessment, prevention and intervention.
In recent decades, there has been a notable rise in the frequency of non-communicable diseases and their effect on public health, with cardiovascular disease (CVD) being a prime representative of this category.
Simultaneously, partly due to increased human longevity, mild cognitive impairment (MCI) is becoming more prevalent in the population, and these conditions often co-occur. It is estimated that one-third of patients with CVD experience some degree of cognitive impairment.
In response to this, the 2019 World Health Organization guidelines on Risk Reduction of Cognitive Decline and Dementia advocate for personalised, proactive risk reduction initiatives to combat MCI through improved risk assessment and individualised prevention. This is precisely what the DORIAN GRAY project hopes to achieve.
The exact interaction between cardiovascular risk factors and brain pathologies remains unclear, prompting the project’s primary objective: to integrate various laboratory, genetic and imaging biomarkers with clinical variables to develop an artificial intelligence (AI)-powered digital twin model for personalised risk assessment and stratification.
We aim to provide a more individualised approach to preventing MCI through avatar-based coaching exergaming, which will function as both a cognitive enhancement tool via the exergame component and a lifestyle intervention tool through the coaching component.
The two diseases are certainly linked through the damage that CVD inflicts on the central nervous system. Clinical and subclinical cerebral infarcts adversely impact brain function and connectivity. Arteriosclerosis leads to arterial stiffness, which increases arterial pulse pressure on the cerebral vasculature. Together with low cardiac output – caused by, for example, atrial fibrillation or heart failure – this results in chronic cerebral hypoperfusion, contributing to neuroinflammation and white matter injury.
Much of the relationship between CVD and MCI still needs to be explored and is often overlooked in clinical practice. This is partly due to the lack of effective treatment for MCI. In addition, the organisation of conventional medicine into specific disciplines supports a reductionist approach, sometimes making the connections between organs and systems less apparent.
Tackling the interaction of CVD and MCI requires an interdisciplinary effort, which is what DORIAN GRAY will provide.
The AI-based tool being developed as part of the DORIAN GRAY project is a digital twin and will function as a stratification tool for MCI risk assessment. While it aims to facilitate cognitive screening for the high-risk subgroup of CVD patients and individuals with cerebrovascular risk factors, it is also designed to be adaptable for the general population.
Our proposed intervention – exergaming – is defined as ‘physical exercise interactively combined with cognitive stimulation in a gaming environment’. Existing evidence suggests that such activities are associated with broad benefits in cognition, emotional and social functioning, as well as overall health. However, several psychological barriers may hinder its implementation, particularly for individuals experiencing cognitive decline, such as diminished initiative and interest.
By leveraging an avatar approach to exergaming, we believe we can address some of the psycho-sociological barriers to motivation and create a personalised and adaptive physical–cognitive intervention, enhancing user experience and compliance through quests in a ‘juicy’ role-playing game (RPG)-like environment – meaning one that feels alive and responds to everything the user does.
The digital coaching system will be integrated with an avatar-based exergame within an application called MIRROR. The coaching system will provide a behavioural intervention through motivational and educational messages based on behavioural change techniques.
The integrated multidomain exergame will utilise pervasive technology, including smartwatches, smartphones and tablets, to deliver personalised and dynamically adaptive combined physical training and cognitive stimulation programmes. These will take the form of structured ‘gamified’ training sessions, realised as goal-oriented mini-quests with specific cognitive-physical objectives. They will be virtually situated within an RPG-like environment to enhance engagement and adherence to the intervention.
We anticipate that our intervention will demonstrate high levels of acceptability and will be capable of improving or at least maintaining cognitive functioning over a follow-up period of 12 months.
The MIRROR app will collect qualitative and quantitative real-world data on heart rate, blood pressure, and blood oxygen levels during interactions with the exergame.
This information will be provided as summary metrics for each exergaming session within the MIRROR app for both the study physicians and participants. It will be used to monitor the participants’ safety and progress, as well as to adjust the overall exergaming intensity for each individual.
DORIAN GRAY will investigate the interconnected physiological pathways linking CVD and MCI, providing insights into their shared mechanisms and aiming to develop a neurobiology-based hypothesis relating MCI to CVD.
This will allow us to create a reliable AI tool for risk stratification of MCI across various subgroups, which healthcare systems can utilise as a screening method for primary and secondary MCI prevention.
By developing an interactive and immersive healthcare intervention like the MIRROR app, DORIAN GRAY aims to boost patient engagement and positively influence social dynamics within healthcare environments, empowering individuals to take control of their health.
A clinical study planned as part of the DORIAN GRAY project will evaluate the efficacy of this intervention in a high-risk population of patients with heart failure and consider efficacy and implementation. A second clinical study will consider individuals with MCI and cardiovascular risk factors and the socioeconomic impact of the multidomain intervention. The studies will identify insights for adherence and assessing its cost-effectiveness in the context of secondary prevention.
Both the MIRROR app and the exergame, if proven effective, will provide a solution that can be adapted into a commercial product for broader use or utilised as a medical device to treat patients with varying degrees of MCI, ideally leading to reduced healthcare expenses.
In this way, DORIAN GRAY fully endorses the 5-P Medicine vision adopted by the EU, which recommends digital transformation towards the goals of predictive, preventive, personalised, participatory and psycho-cognitive healthcare as a target for 2030.
With data expected from over 300,000 individuals across various countries, the main challenge we are currently facing is obtaining detailed information and access to these diverse cohorts in a timely manner. Once this is achieved, the primary challenge will be addressing data heterogeneity.
Neuroimaging features and electrocardiogram variables will be extracted from scratch using a consistent postprocessing pipeline for all datasets to ensure maximum harmonisation of parameters. Clinical variables will be recoded across all datasets, and the variability in the platforms used to measure metabolomics and proteomics will be addressed by evaluating all individual metabolites and protein analytes.
Despite these efforts, we anticipate missing data, which we plan to address by employing multivariate data imputation methods, such as k-nearest neighbours – a machine learning technique for handling missing values – along with supervised learning approaches like regression trees and artificial neural networks.
However, training our digital twin model with the derived dataset may still encounter the challenge of insufficient data. This can be addressed through data augmentation and transfer learning techniques to maximise the use of the available data. Alternatively, simpler models could also be developed using a reduced set of variables or information.
Beyond merely raising awareness of the connection between CVD and MCI, our project aims to identify and provide new, reliable biomarkers for assessing cognitive decline in this demographic. This could promote the establishment of a cohesive clinical pathway across cardiology, neurology and psychiatry for the diagnosis and eventual prevention of MCI.
Companies might utilise the MIRROR app to create various versions tailored for use as a commercial tool or as a medical device for patients. Integrating the coaching tool and the exergame into systems for the primary and secondary prevention of MCI would positively affect cognitive function while promoting healthy ageing throughout the UK and Europe. It would also enhance confidence in digital health interventions and hopefully foster greater public engagement.
We estimate potential savings of between €200bn and €400bn across Europe and the UK over a 27-year period by preventing the progression of up to two million individuals to dementia.
By promoting interdisciplinary collaboration and personalised digital health solutions, DORIAN GRAY has the potential to transform patient care, impact healthcare policies and usher in a new era of dementia prevention and healthy ageing throughout the UK and Europe.
Ivana Galinovic MD PhD
Radiologist, researcher and head of CSB neuroradiology, Center for Stroke Research Berlin (CSB), Charité – Universitaetsmedizin Berlin, Germany
A recent publication by the British Thoracic Society (BTS) offers the first long-term analysis of the UK Idiopathic Pulmonary Fibrosis (IPF) Registry.
IPF is a progressive interstitial lung disease marked by a significant symptom burden and a poor prognosis. While disease progression is variable, accurately identifying patients at risk for more rapid decline remains difficult.
The IPF Registry collects real-world data on disease progression, clinical features, therapeutic approaches, and patient outcomes. Established in 2013, it is a national, multicentre, observational registry that includes both prospective and retrospective IPF cases across the UK.
Data on 5,052 IPF cases across 64 UK hospitals, including 13 specialist centres were analysed. The cohort had a mean age of 74, the majority (77.8%) were male and 76% presented with at least one comorbidity. Two thirds (66%) were ex-smokers, 93.9% had no family history of IPF and 10% had pulmonary hypertension.
The researchers found that referral trends shifted from primary to secondary care over time, with the mean wait from referral to first clinic visit at just over 13 weeks; 60% of patients reported symptoms for over a year before the first clinic visit.
Diagnosis of IPF was primarily through high-resolution computed tomography, with 97% showing interstitial pneumonia patterns. At presentation, 48% of patients were prescribed antifibrotic treatments, with nintedanib use surpassing pirfenidone from 2017 onwards.
Mortality was 31% and, over time, increasing numbers were deemed ineligible for lung transplantation. Long wait times for diagnosis and treatment were noted as a challenge for optimal IPF management within the NHS.
Reflecting on the impact of their research, the researchers wrote: ‘It is paramount to have large-scale, longitudinal data sets for patients with IPF because, without such data, it would be challenging to identify and quantify unmet needs.’
Lead author Dr Ahmed Fahim added: ‘It is exciting to present a decade of data from the BTS Registry and highlighting the importance of workforce expansion to deliver high-quality care and improve clinical outcomes.’
Study authors emphasised that delayed diagnosis, timely access to treatment and insufficient involvement in clinical research are important factors impacting care quality for this patient population.
They anticipate that their analysis will help shape the future of IPF care by providing a benchmarking model and improving both knowledge and clinical management.
Reference
Fahim A et al. Idiopathic pulmonary fibrosis in the UK: findings from the British Thoracic Society UK Idiopathic Pulmonary Fibrosis Registry. BMJ Open Respir Res 2025;12:e002773.
Acute oncological emergencies may be distressing for patients with cancer and their families and can occur in unfamiliar clinical surroundings. Many people with such emergencies navigate complex healthcare pathways and some centres may lack subspeciality pathways to guide treatment. Clinicians stand to gain from better understanding of patient experiences, as this insight can inform interventions to enhance safety, satisfaction and efficiency of treatment for this patient group.
As such, UK researchers sought to identify core aspects of the care experience important to patients with cancer during an acute oncological episode. By mapping domains of patient experience, they aimed to inform future patient-reported experience measures to ultimately shape service provision.
Using a mixed methods approach, the scoping review covered literature published since the inception of acute oncology as subspecialty in the UK in 2019 through to 2024. A total of 15 articles from 14 unique studies were included, capturing experiences relayed by patients, caregivers and healthcare professionals across varied care settings.
The results revealed six interlinked domains: managing emotional distress, including the polarising experience of palliative care discussions; being treated with compassion and respect; deciding when to seek help; hospital environment; quality of care and communication; and discharge planning.
Several issues were unique to emergency cancer care, such as patient distress resulting from uncertainty, deciding when to seek help and the impact of mentioning ‘palliative care’ in urgent and emergent scenarios.
The authors emphasised the value of this study, which has ‘drawn together for the first time the core issues of importance to the experiences of people with cancer, and their carers, when seeking help for oncological emergencies’.
The findings address relevant clinical practice by clarifying gaps in care domains for this patient group. Healthcare providers, hospital administrators and policymakers can apply these findings to assess and continually advance specialist urgent and emergency cancer care services, the authors said.
As such, the next phase of the research involves developing an acute oncology patient-reported experience measures using the domains and subdomains synthesised here, alongside patient interviews.
A feasibility study in a UK acute oncology service will then follow. The study authors noted how this iterative process should enhance the measure’s accuracy and relevance for frontline teams ‘such that specialist urgent and emergency cancer care services are enabled to evaluate and continuously improve’.
Reference
Hurley-Wallace AL et al. Mixed methods scoping review of patients’ experiences of urgent and emergency cancer care. Supportive Care in Cancer. 2025;33:208.
7th April 2025
With an introduction from Helena Beer, consultant gynaecologist Mr James Tibbott, lead clinician for gynaecology at Leeds Teaching Hospitals NHS Trust, discusses the Trust’s recent endometriosis centre recognition and the technology that helped them achieve it, how robotic surgery is transforming timely patient care and the latest research set to revolutionise diagnostics and treatment for this debilitating condition.
Endometriosis is the second most common gynaecological condition in the UK, after uterine fibroids, and despite its prevalence it is often misunderstood. Awareness and discussion of the condition is ramping up among the public, with the recent approval of relugolix combination therapy (brand name Ryeqo) by the National Institute for Health and Care Excellence being the latest development getting people talking.
But it’s the delays in diagnosis and treatment that tend to dominate the headlines, and this is far from the whole story in endometriosis care. There are inspirational examples of best practice, technological innovations and cutting-edge research that are set to transform patient care for the better and, in some cases, are already making a significant difference.
In January 2025, the endometriosis team at Leeds Teaching Hospitals NHS Trust (LTHT) was awarded provisional status as a British Society for Gynaecological Endoscopy (BSGE) Accredited Endometriosis Centre. This recognition highlights their commitments to excellence in endometriosis treatment, person-centred care and ongoing research and innovation.
One of the driving forces behind the accreditation was the team’s introduction of robotic surgery, which has recently led to the introduction of an Endometriosis Robotic High Intensity Theatre (HIT) list. Led by Mr James Tibbott, consultant gynaecologist and the Trust’s lead clinician for gynaecology, this HIT list offers more patients a less invasive surgical option with greater precision and shorter recovery times. And, crucially, it also reduces waiting lists.
Achieving BSG accreditation puts Leeds Teaching Hospitals Trust at the forefront of gynaecological care for patients with endometriosis. It means that our patients have a quality assurance about the level and standard of care that they receive at Leeds Teaching Hospitals Trust that is independently monitored by a governing body.
I think this is important for patients, as they want the right treatment for them by the right people. It also means that for severe, complex endometriosis, there’s very much a multidisciplinary team-driven approach to their care that the patients can feel reliably that they’re getting a high standard of care.
We have three robots at our Trust: two at the abdominal surgery hospital and one in the head and neck and paediatric surgical specialty, which is extremely underutilised.
We noticed that this underutilised robot gave us a gap in the market to start doing some simpler day cases – simple hysterectomies, simple endometriosis – and it’s improved our day case hysterectomy rate no end. That now means that I can use the technology and join colleagues at our abdominal surgery hospital [for more complex procedures].
Unfortunately, at this moment, we still don’t have a regular theatre list, but I can pick up ad hoc sessions, which improves our theatre productivity and utilisation. More importantly, I can join colleagues in theatre, so I’ve joined a colleague to do a hysterectomy and a ureteric reimplantation. I’ve joined colleagues to do complex colorectal work as well as our own surgeries.
In fact, we’ve already done a case where we’ve had a urology surgeon, colorectal surgeon and gynaecological surgeon doing three different operations on one patient, all using the same modality. We will hopefully expand that to include thoracic surgery as well.
So, for me, robotic surgery gives an unprecedented level of accuracy for our patients with endometriosis. It is my fastest mode of operating, both for hysterectomy and excision of endometriosis full stop. What we can achieve robotically far exceeds what we can achieve laparoscopically.
For example, a complex endometriosis case with bowel excision or resection, usually takes half a day of operating. With the robotic HIT list, we managed to do three complex operations with disc excisions of the rectum during a full day operating. So, we improved efficiency three-fold.
When we operate laparoscopically for a complex endometriosis case, after one of those cases, we’re usually absolutely exhausted, and doing more than one in a day becomes very, very difficult physically and mentally – these are mentally draining procedures.
What we’ve seen is a reduction in operating time due to robotics and a reduction in length of stay due to robotic surgery for complex endometriosis. After having had a robotic hysterectomy, patients seem to experience less pain, and that’s probably because we operate at lower pressures, and their recovery time is significantly quicker.
There are more and more non-invasive tests for endometriosis that are being investigated and piloted, and this really is the key. We need a diagnostic test that doesn’t involve a laparoscopy. Ideally, it should be a point-of-care test that we can then see patients in primary care, get that test and refer to the appropriate person, if needed.
Ideally, if the point-of-care test can give us an idea of how bad their endometriosis is, it would help streamline care so everybody who tested positive for Stage Four endometriosis was referred to, for example, an endometriosis centre in the UK.
Research plays a key role in endometriosis care. It allows us to push the boundaries. For us, the most exciting piece of research that’s happening at the moment is the AMY109 study. This is where we’re taking patients with severe endometriosis and randomising them to a monthly monoclonal antibody infusion. In animal models, this has been curative and if this test of theory works, if we’re able to cure patients of endometriosis with an antibody infusion, the future for endometriosis care may be completely different.
Imagine a scenario where we can do a test that’s positive for endometriosis, perform an ultrasound scan, lavage off some peritoneal fluid, put it in an analyser, work out what complex inflammatory process is driving that patient’s endometriosis, and then arrange for an antibody infusion specifically for that patient. I think that’s a real potential game changer – an extremely exciting future.
Image ©2025 Intuitive Surgical Operations, Inc
3rd April 2025
A recent retrospective evaluation of pleural intervention data in the United Kingdom revealed that inadequate use of thoracic ultrasound contributed to both potential and actual harm from pleural procedures.
Previous national audits of pleural interventions, including chest drain insertions, have revealed deficiencies in care contributing to patient deaths and severe harm. Inadequate out-of-hours staffing by trained operators and related infrastructure issues have been identified as potential risk factors.
Consequently, a new review of patient safety incidents from the National Reporting and Learning System has been undertaken to assess whether the NHS is effectively mitigating these risks.
Patient safety incidents (Levels 3, 4, and 5) involving harm from pleural interventions were obtained for the period between April 2018 and March 2022, excluding general anaesthetic procedures. Incidents specifically related to chest drain insertions and pleural effusion aspirations were analysed. Each event was reviewed for its location, timing, evidence of thoracic ultrasound use, equipment used, and the type of harm reported.
Out of 256 incidents, 21 were directly related to pleural interventions and were included for review. Among these, 17 incidents involved direct organ puncture – mostly of the liver – with various drain types used. This raises serious concerns about procedural accuracy.
Only four incidents explicitly reported the use of thoracic ultrasound, while its use was either unspecified or deemed inappropriate in the remainder. Most events (n= 19/21) occurred outside respiratory environments. Two of the 21 relevant incidents resulted in death.
Reflecting on how these findings should be interpreted, study authors pointed to a likely under-reporting of such incidents. ‘The true the amount of harm in the system is likely to be greater than identified and a more detailed investigation is needed,’ they said.
They also noted that the study focused on Level 3 incidents and above, and that re-expansion pulmonary oedema was excluded from the review, which should be included in future evaluations.
Unequivocal in their recommendations for practice, the study researchers urged a nationwide review of local policies and procedures for pleural interventions. This should be prioritised ‘at a national level by specialty groups and societies, whose clinicians deliver pleural intervention’, they said.
Future, similar audits should be larger, more systematic and should clarify whether inadequate ultrasound use, or other factors contribute to these incidents, the authors concluded.
Commenting further on the implications of this study, lead author Dr Andrew Stanton said: ‘This study highlights the importance for teams in all clinical areas treating pleural effusions that ultrasound must be fully embedded in clinical protocols and used appropriately to provide safe intervention.’
His team concluded that stronger adherence to safety protocols and improved training will be key to reducing patient harm, and urge national organisations and NHS Trusts to take proactive steps to improve safety and standardisation in pleural care.
Reference
Stanton AE et al. Pleural procedural safety in the UK: is everyone’s house in order? Reflections from the BTS National Pleural Service Organisational Audit and a national review of patient safety incidents. BMJ Open Respir Res 2025;12:e002840.
IMPORTANT LINKS
MORE FROM COGORA
© Cogora 2025
Cogora Limited. 1 Giltspur Street, London EC1A 9DD
Registered in the United Kingdom. Reg. No. 2147432
