by Dan Devitt, Children’s Commissioner
In memory of Sophie Holman and with thanks to all those who are working to prevent deaths from asthma in London.
From June 2019 to June 2020 I had the privilege of serving as a commissioner in the Barnet Havering & Redbridge (BHR) component of the new East London Health and Care Partnership and leading on the crafting, refinement, authorisation and roll out of a ground-breaking local incentive scheme (LIS) that has started to revolutionise the delivery of asthma care in the BHR area.
I’d had only one introduction to the BHR system prior to working there and it was the sort of introduction you really don’t forget and really wish you’d never had.
It occurred way back when I was part of the HLP team helping support the new Child Death Review systems get established. I was sitting in the office when I got a call from colleagues in the local system saying that they had just had a child death reported. I had been working on the child death agenda for a couple of years so the death in itself was not startling to me, it was the cause. Asthma. Another asthma death.
Asthma Kills. Asthma can tear whole families to pieces.
I remember providing a bit of guidance on the processes that needed to take place and wished the team well as they set about looking into what had happened and why another life had been lost.
In my time at HLP I think I came across perhaps 7 deaths from asthma, and each and every one of them left me with the deep sense that we were missing something. Something about the way the NHS approached asthma. Something that, despite all the knowledge, enquiries and expertise we brought to bear on the issue, was lacking.
Why did we need a LIS?
Fast forward a year or so. Times change and I am now being interviewed for an interim commissioner role in BHR. The interview goes well and I am offered the job. One of the areas I’m asked to cover is asthma in CYP and the work flowing from a Coroners Regulation 28 Report to Prevent Future Deaths.
I mumble something like “Sure …happy to be involved”. I remember thinking at the time “I wonder if this is the death I got the call about”? It was.
Sophie Holman died on December 13, 2017. She was 10 years old.
The Eastern Area of Greater London Assistant Coroner, Dr Shirley Radcliffe, in her report noted that Sophie had been seen by the local NHS 48 times in the run up to her death. Despite these multiple presentations indicating an underlying worsening in her condition, each acute episode was treated as an individual incident and no overall pattern of need and her decline was recognised. No integrated paediatric asthma care package was established to support her. If there had been, as has been recommended by many other coroner reports and by the National Review of Asthma Deaths, maybe her death could have been prevented.
The case of Sophie Holman is a stark reminder that when services are fractured and not evidence-based avoidable tragedies will continue. We can’t hide from this fact. We need instead to face up to it and do something about it.
Sophie’s tragic death was the spur that started some amazing work in BHR. The response of the BHR system in rallying behind the asthma LIS is a testament to the real and ongoing commitment shared across East London to build a system that delivers the best possible asthma care for children and young people. From this tragedy, there is genuine hope.
The following aims to explain what has been done, how it all works and how we hope you can do something magical for asthma care in your area of London. Remember: You already have everything you need to make it work for you. Read on and see just how little of this is new when you really think about it.
A report, a health system and a woman with a plan
The biggest asset we have is our people will be a familiar refrain if you have been anywhere near the NHS in the last 10 to 20 years. I understand this because I got to work with some of the finest NHS and Local Authority people I have ever had the pleasure to serve alongside.
Chief amongst these was the incomparable Lynda Hassel Director of Nursing, Children & Young People Barking Havering and Redbridge University Hospital NHS Trust (BHRUT). Lynda had a great team who had begun looking through the immediate actions they needed to take in the wake of the asthma death and had begun to discuss with the CCG how best to tackle the support and development needs for the rest of the system, specifically primary care and schools.
The CCG had already commissioned three Clinical Nurse Specialists (CNSs) to begin the heavy lifting with Lynda’s team on transforming asthma care. The CNS had begun weaving a magical transformation of asthma care pathways in the hospital with the enthusiasm, dedication and flexibility of the clinical leadership in the trust.
The work was beginning and there was clarity as to what the real problems in asthma care were. The Children’s Commissioning team, GP lead for Asthma, Primary Care Commissioners, Medicines Management and a small army of brilliant local and NEL-level asthma network notables began the slow process of assembling the business case, economic and clinical assessment and LIS structure.
From the CCG Committees to the GP Federations, I can honestly say I only ever encountered open doors and support in getting the LIS commissioned and rolled out. I’d love to say this is down to my unique virtues and abilities, but in truth, this is about the fact that everyone already knew that what we were doing needed to be done and they were committed to making sure it was.
With this intervention, we knew that bits of the jigsaw were being filled in and where the LIS could fill more gaps. Conversations that had already occurred across the system had enabled a far-reaching and ambitious action plan that aimed to take the recommendations of the coroner’s support and support the BHR asthma offer to become a transformational system with lessons shared, practices and insights adapted that could inform other priority agendas for CYP.
The asthma LIS
With a consensus across the BHR system that a consistent system was needed to support asthma care, the LIS outlined a model for primary care that can meet the needs of CYP with asthma. It aims to promote and embed a positive culture for delivery and seeks to support a sustainable high-quality model for asthma support beyond the duration of the LIS.
There are a number of important principles underpinning the LIS. These principles set the direction for the different elements of the LIS and crucially the cultural transformation we sought to bring about. Whilst the LIS focusses on primary care presentations, its work reaches into the home, the school and the acute setting in a system orientated way.
If we deliver the LIS well, we can stop the deaths of children from asthma: Inquests into the deaths of CYP have shown that only a well-focussed approach to care from a network or system geared to deliver high-quality evidence-based care can prevent deaths. For over 50 years we have had the necessary skills and knowledge to prevent asthma deaths – but due to the complexity of the systems we work in they have continued to occur. Only a system orientated approach – one that links and strengthen primary, secondary and tertiary care – can really address the management of paediatric asthma as a chronic long-term condition.
Asthma should be treated as a chronic condition and not as a sequence of acute exacerbations, and to do this well we need to work closely and effectively with others in an asthma network: If we continue to treat only the acute episodes experienced by CYP we will not address the condition’s underlying and enduring causes. We need to ensure that we take every opportunity to treat paediatric asthma as a long-term condition and strengthen the parent, carer and patient-facing self-care opportunities we have alongside the care we personally deliver.
Symptom-free CYP with asthma is what we should be aiming for: not just barely controlled CYP with asthma. Symptom-free means well managed. Anything else simply isn’t.
Asthma care, prescribing and action planning should be evidence-based, personalised and place the empowerment and education of CYP, parents and carers at the centre of the system: We know that the delivery of personalised asthma management and action plans is crucial to supporting CYP with asthma as part of a network.
We can lay the foundations for great asthma care in childhood: This will ensure that transitioning young people and older asthmatics are well prepared to take ownership of their condition and take active steps to manage their health
We need to ensure that the way we manage asthma in primary care – both the clinical and administrative aspects – is an exemplar of good practice and helps support a sustainable model after the LIS has expired: Though driven by the CYP asthma agenda and relating to CYP specifically, the LIS has been developed to ensure it is supportive of and links to improvement works underway in adult services, focusing on the support available to adults with asthma. This is especially important with older children and adolescents transitioning into adulthood and the care of adult services.
There are two sets of national guidance for asthma in CYP which the LIS draws upon the British Thoracic Society and Scottish Intercollegiate Guidance Network (BTS SIGN) and the National Institute for Clinical Evidence (NICE) and one set of London-level guidance – the London Asthma Standards. In addition, we used other validated management templates for supporting asthma management in CYP and the HLP Asthma Toolkit. A combined NICE and BTS/SIGN guidance is being developed and will be available in the near future
Structure of the LIS
There are four key elements in the LIS which taken together provide the basic structures that enable primary care to deliver comprehensive, evidence-based, high-quality sustainable asthma care for CYP.
|E1||Practice asthma improvement development phase
|E2||Medication management for CYP with asthma||Consistent high-quality prescribing for CYP with asthma:
|E3||Managing asthma as a long-term condition||Development of a practice approach to managing CYP with asthma:
|E4||Managing acute asthma & poorly controlled asthmatics||Development of practice level approach to managing acute asthma in CYP:
Some lessons learned
- No one – and I do mean no-one – achieves anything of lasting merit in the NHS alone. We are a big family and we aren’t great at always remembering that the whole organisation makes or breaks the work we do. The LIS exists not because of my Undoubted/Unquestioned/ Unlikely/Completely absent genius, charisma, technical skills and winning smile, but because the organisations I worked with and the people within them cared enough about the work to help it move from a vague idea into a robust, sustainable and effective scheme to drive improvement in how asthma care is managed in BHR.
- We can always improve what we do, and we need to stop letting the strive for perfection get in the way of messy but effective. Throughout this process, we had to come up with something pragmatic, something useful and something …quickly. We didn’t have the time, resources or space to get everything perfectly right first time around. We had to adopt a framework approach that worked for a very wide range of GP practices – some with a lot of experience on delivering high-quality asthma care, others more new to the agenda, and others finding it hard to navigate between the “Scylla and Charybdis” of the two major clinical guidance sets from BTS SIGN and NICE.
- If you really want to know how to improve the local systems you serve, simply listen to the professionals within it and their patients. Listen to them, and when they say “We don’t like this” try to find a way to stop doing the thing they don’t like and start doing what they want you to do. Listening to your patients and the system around you is an ongoing process, it should be continual and reflexive – not just a one-off annual event. As Roy Lilley often says “Listen to your Front Line.”
- Essentially no fragmented, disconnected system can create lasting system level high quality care. It doesn’t matter if you as a clinician deliver excellent care if it is effectively delivered in a vacuum and the wider system – including parent and carers – are not aware of, empowered to support or able to understand what you are doing. Asthma like so many other long-term conditions is only well managed on a system level and all of us are needed to make sure we play our part in building that system response.
- Care needs to be evidence-based, and you need the business processes to capture the data, understand the real patterns of health, presentations and episodes that are happening to be aware of the acute episodes and the underlying causes that are triggering those acute episodes. Audit and PDSA cycles are your new best friends!!
- Small tweaks to how you deliver care, prescribe asthma medications, check inhaler technique, share asthma management plans with everyone who can help support the health of CYP will make enormous differences.
- Understanding the business and admin processes that will make the work you do live or die. There is nothing without good admin and the advice of wise practice managers and admin staff make most of your problems disappear.
- If your system of care, your prescribing and asthma management plans are not standardised they won’t be easily shared or readily understood across the NHS, let alone embraced by education sector partners: These groups are CRUCIAL to making asthma care work. Bearing in mind how much time CYP spend in schools we would be mad not to support school health services and local authority public health as must as we possibly can.
If not ‘already’, then when?
A lot of health-related blogs try to leave you with a killer question, the key takeaway you can pop into a PowerPoint slide and whip out at meetings and seminars to general nodding of heads, scattered frowns of concentration, and pursed lips of colleagues thinking about what they are going to have for lunch. The real question here, the “killer takeaway” is: Why aren’t you doing this already?
Nothing in the magical prose above is really new to you, is it? A couple of the local factors, the specifics, were a bit novel, but nothing is really new here.
Multi-disciplinary working? Evidence-based care? Listening and responding to patients and clinicians? Inclusive networks? Keeping it simple? Communicate, plan and work with the folk who want to work with you? User guides for the folks who have to actually do the work? Communications to schools, social care, the wider system?
If you think any of this is new then please email me as I think I have a Bridge in Central London you might be interested in. Very reasonable prices for the right buyer.