Many sets of guidance and gold-standard policies on children and young people’s (CYP) asthma are available, but we identified an opportunity for a London-specific set of whole-system standards to improve outcomes. Development of the standards involved identifying existing standards and guidelines and bringing them together into one accessible, peer-reviewed resource.
These include NICE guidelines and quality standards for asthma, as well as a number of other NICE recommendations on smoking cessation, transition, patient experience, food allergy, and medicines adherence/optimisation. The London standards cover the entire asthma pathway, and relate to all organisations involved in the care, management and support of CYP with asthma. They were originally compiled in 2016.
Developments in local and national policy and practices and the release of new standards and guidelines has meant that the standards needed to be revised and adapted. The new standards were launched during the #AskAboutAsthma campaign in September 2020.
Aims and objectives
Asthma is the most common long-term condition among CYP, with 3-4 children in every classroom and over 240,000 children in London affected. The National Review of Asthma Deaths (2014) highlighted that children are still dying unnecessarily. The UK has the highest asthma mortality and morbidity in Europe among this demographic.
The key aims of the development of the London Asthma Standards, and their recent refresh were:
- To pull together local, national and international guidance concerning CYP asthma into one resource describing the entire asthma pathway and all organisations involved in the treatment/management/support of this patient group
- To put this guidance in the context of a major urban centre
- To peer-review the standards and approve them through a representative leadership group (now formed by the London Asthma Leadership and Innovation Group – LALIG), which comprises clinicians from across the spectrum of asthma care, commissioners from all 5 ICS areas in London, public health and local authority representatives
- To encourage uptake of the standards by all organisations involved in the treatment and management of CYP with asthma, to reduce the variation in access and quality of care across the capital for CYP with asthma
- To allow the undertaking of a baseline audit, and follow up monitoring, of services against the standards
The NICE Quality Standards and guidelines drawn upon are key to the London standards. They have been used in different ways. For example, QS25 (Quality standards for asthma) has been used to inform the whole resource. In some cases, guidance or quality standards have been used to inform specific whole sections (for example, QS68 Transition from children’s to adults’ services informs section I: Transitional Care).
In addition, some guidance or quality standards inform individual standards (for example, the smoking cessation guidance contained within QS45, PH14, NH92 and PH48 are referenced in London Standard 11). This standard states: Every child and their family are assessed at health or social care encounters for their exposure to smoking either actively or passively (including e-cigarettes). They should be provided with brief advice and referred to smoking cessation clinics. There is access to smoking cessation clinics and other support services for families, Fraser competent CYP and carers that address issues of smoking and monitor outcomes.
Reasons for implementing your project
Before the development of the London Asthma Standards, there were at least 17 commissioning or guideline documents on asthma in use in London. This made it hard for commissioners to know what to commission against and for providers and clinicians to keep up to date.
The intention of the Standards was to bring these documents together into one document which could be used to drive up quality of care and to standardise care provided (Public Health England data for asthma admissions to A&E showed a 3-fold variation across the London Boroughs; local pharmacy audit also showed variation in the care provided to CYP with asthma.)
A leadership group was formed in 2015 to consider evidence and approach to the growing number of deaths and admissions. This group – now called the London Asthma Leadership and Innovation Group (LALIG) – provides direction and leadership to those working within CYP asthma in London. The leadership group developed a set of ambitions for asthma in London that detail the proactive, accessible and coordinated care the CYP should experience.
A consultation was undertaken, with engagement with healthcare professionals, providers, commissioners, and the Royal Colleges. Current pockets of good practice would be used to set a standard of care. This would enable self-assessment and provide commissioners with a framework in which to work and commission services. A London Asthma Toolkit was also developed to support implementation of the standards. The ambitions, standards and online toolkit form the basis of the transformation programme for CYP asthma in London run by HLP.
The aim of this trio of resources – and the associated #AskAboutAsthma awareness campaign – is to reduce attendance at urgent and emergency care departments, promote self-management and provide CYP, their families and professionals with appropriate resources and guidelines and to engage professional groups that might not otherwise be aware of clinical guidelines, such as teachers, local authorities and community pharmacists.
There have been many recent developments in terms of understanding of clinical best practice, and local, national and international recommendations have adapted accordingly. The structure of the commissioning system is London has also changed. The LALIG therefore agreed that the Standards needed to be updated to reflect these changes.
How did you implement the project
The original development of the London Asthma Standards involved engagement over a one month period and feedback, in particular from the Royal Colleges, as well as commissioners and providers.
There were challenges in relation to endorsement by the colleges as they had not been involved from the start of the process. These were overcome through extensive discussion and engagement. In 2016, the Standards were endorsed by the Royal College of Physicians and the Royal College of General Practitioners as well as the HLP Strategic Clinical Leadership Group and Commissioning Advisory Group.
The standards are not another set of guidelines but bring together all the other documents to aid their implementation and help transform and drive up care for children with asthma or acute viral-induced wheeze in London. They are intended to improve diagnosis, management, and continuity of care, prescribing, monitoring and education across London.
In order to help implement the standards at every level across the capital a digital solution was created in the London Asthma toolkit which brings a number of resources together to enable commissioners, providers, pharmacists, schools, parents, carers and children and young people themselves to have a one stop place to go to find information on children’s asthma. The work was done on a goodwill basis by members of the original asthma leadership group and more recently LALIG and the Standards Subgroup; no additional costs beyond the existing programme team were incurred.
The London Asthma Standards represent a set of comprehensive, peer reviewed and well-regarded standards of care for the whole system of asthma care in London. They are part of a wider programme that aims to improve CYP asthma in London, that includes the asthma ambitions, toolkit and an awareness campaign (#AskAboutAsthma).
The London standards are a means of driving forward positive change, a source of evidence for local teams to draw upon to support improvement efforts, for commissioners to commission against and providers to assess their services against. Benefits include use of the standards for baseline self-assessment. A baseline audit was sent to all 32 clinical commissioning groups and acute providers in 2016. The audit showed significant variation in practice with areas such as schools and out of hospital care being largely RAG rated as red.
The standards have also been used as the basis for a peer review in north central London. The entire asthma system (incorporating the clinical commissioning groups, primary and secondary care, pharmacy and schools) was assessed against the standards, and a report compiled on the different organisations included, detailing whether and how the standards were being met. A regional asthma strategy was developed based on the findings of the report and a programme director employed to support its implementation.
Significant improvements have been seen in the area since these developments took place – for example numbers of admissions for asthma in Islington have fallen over 5 years (they have moved from being the 2nd worst London borough for admissions to 26th in London). The standards have resulted in a number of additional asthma nurse posts and other resources across London. The associated asthma toolkit is helping drive up standards and saves resource and time by doing things once for London.
The work done to date has been shared widely and received significant attention including sharing via the Fab NHS Academy and being nominated for three categories in the 2017 Nursing Times awards. Findings have been presented regionally, nationally and internationally, with poster presentations at the Royal College of Paediatric and Child Health conference, presentations at the Royal College of Nursing Pharmacists national meeting, National Paediatric Asthma Collaborative conference (NPAC), European Academy of Paediatric Societies in Switzerland and to the International Primary Care Respiratory Group.
Key learning points
The key learning from undertaking this work has been that it always takes longer than you originally think! The healthcare system that we have means that there is a wide variety of health professionals and providers involved in the care of CYP with asthma. Often there is wide variation in approach and understanding management of asthma in CYP.
Ensuring broad agreement/sign up and involvement of the right people (a broad spectrum) before the start of the project is key. It was crucial that we involved local commissioners and providers (primary, secondary and tertiary) and school nurses from across London to ensure that the standards were practical and could/would be adapted and used. We reflect that having local champions and leads is vital in achieving sustainability and also that the toolkit meant that solutions and implementation of the standards could be tailored to local need (one size does not fit all). Earlier involvement of the Royal Colleges would have been helpful in them endorsing the standards and toolkit which is vital when looking for system wide change.
- Identification of a clinical champion and project lead to drive forward the programme is key
- Understanding of the governance structures needed to get agreement sign off and endorsement of the changes
- Wide stakeholder engagement and a good communications plan helps
- Draw on existing expertise to formulate individual standards
- If there are areas of debate, ensure both sides are represented. Form subgroups to consider particular areas if necessary
- Stick to a timescale.