Healthy London Partnership (HLP) is a collaboration between London’s health and social care system which includes 32 clinical commissioning groups (CCGs) and NHS England - London region) to support better health for London.
The Children and Young People’s Programme was established to bring about transformational change in services for children and young people in the capital. One of the key priorities is to reduce the variation in diagnosis and management of asthma.
A common misconception is that we manage asthma in children well. However, the National Review of Asthma Deaths (2014) highlighted children are still dying and the UK has the highest asthma mortality and morbidity in Europe in CYP. HLP are trying to reverse this trend by introducing a programme of work similar to that in Finland.
One of the key pieces of work undertaken to help with this has been to identify a number of existing standards relating to the care of children and young people with asthma. The programme brings together a number of standards and aspirations, including those set out in NICE Quality Standard for Asthma (QS25) and a number of NICE guidance recommendations (QS43, PH14, PH1, PH48) in relation to smoking cessation, into one resource.
The standards outline a number of ambitions related to proactive accessible and co-ordinated care but most importantly each organisation (primary and community care, acute, care, pharmacy, schools) will have a clear named lead that will be responsible and accountable for asthma and the delivery of care. Utilisation of these standards by both commissioners and providers will start to reduce the enormous variation in outcomes that children and young people experience across the capital.
They will also act as a stepping stone towards the vision of the Five Year Forward View and transformation of more local ‘place based’ care services for children and young people through the introductions of networks or communities of practice.
The standards can be accessed by clicking here.
Aims & Objectives
The key aims were:
A reduction in the variation in access and quality of care across the capital for children and young people with asthma.
- Agreed vision, and ambitions for London for the care of CYP with asthma
- Development of a set of standards of care for CYP with asthma across London
- Collation of agreed resources for sharing
- Development of an online solution -London asthma toolkit to help implement the agreed standards and resources to improve care across the capital
- undertaking a baseline audit against the standards.
Asthma is the most common long term medical condition among children in the UK, affecting roughly 10% of all children. More than 240,000 children and young people in London have asthma equating to around three in every classroom. It is one of the top three causes of admission to hospital and 75% of these are avoidable. UK has a higher rate of asthma deaths when compared to our European counterparts. 90% of these deaths are preventable in children who were otherwise healthy and should have gone on to lead a full and productive life. It cannot be cured, but with appropriate management quality of life can be improved. The National Review of Asthma Deaths found deficiencies in routine care and treatment of asthma and lack of recognition of deterioration and management of attacks
In the last 5 years there has been 17 or more existing commissioning or guideline documents on asthma which has made it hard for commissioners to know what to commission against and for providers to keep up to date. The intention was to bring all these documents together into one easy to read format which could be utilised by commissioners and providers to drive up the quality of care and also to standardise the care that was being provided. Public Health England data for London asthma admissions to A&E showed a three-fold variation across the London Boroughs, in addition local pharmacy audit demonstrated a variation in the care provided to children and young people with asthma.
In order to drive up standards in the capital the asthma leadership group was formed in 2015 to consider evidence and approach to the growing number of deaths and admissions.
Given their findings, the panel developed a set of ambitions for asthma in London and the London asthma standards for children and young people. A consultation period was undertaken with engagement with a variety of healthcare professionals, providers, commissioners and the Royal Colleges. It was felt that we should support and utilise current pockets of good practice and set a standard of care. This would enable self-assessment and provide commissioners with a framework in which to work and commission services for children with asthma.
In order to implement these at every level across the capital it required a solution that would bring all the resources into one place to enable, commissioners, providers, pharmacists, schools, parents and carers – as well as CYP themselves - to have a one stop place to go to find all information on children’s asthma. The ‘London asthma toolkit’ was developed.
A working party, led by nurse Programme Lead -Sara Nelson, looked at what was currently available online; it was limited and scattered over a number of sources.
We wanted to reduce attendance at urgent and emergency care departments, promote self-management and provide CYP, their families and professionals with appropriate resources and guidelines. Additionally we wanted to engage groups who wouldn’t be aware of the professional sites; such as teachers, local authorities and community pharmacists.
 Healthy London Partnership (2016) Case for change https://www.healthylondon.org/sites/default/files/Asthma%20CYP%20-%20case%20for%20change%20summary.docx
A group of leading clinicians and commissioners from across the capital were brought together to consider the evidence and approach to the growing number of deaths and admissions. Given their findings they developed a vision (London ambitions) and a set of standards for care of children and young people with asthma and pre-school/viral induced wheeze to complement the existing London Quality Standards, Primary Care Commissioning Framework and Children and Young People’s Acute Care Standards.
Development of the standards was informed through an extensive literature review which included relevant NICE guidance and standards: (NICE Quality Standard for Asthma (QS25) and a number of recommendations in NICE guidance (QS43, PH14, PH1, PH48), existing commissioning guides and best practice and wide engagement that included primary and secondary care clinicians, managers, and commissioners from across London, views from professional bodies, and voluntary sector organisations.
They had extensive engagement over a one month period across the capital and feedback from Royal Colleges, many of whom were happy to comment but challenges around endorsement arose as they had not been included from the beginning. They have been endorsed by the Strategic Clinical Leadership Group, Commissioning Advisory Group and the Royal College of Physicians and the Royal College of General Practitioners.
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.
Within them, Section B of the standards on patient and family support, information provision and experience specifically draw on Statement 4 of QS25: People with asthma are given specific training and assessment in inhaler technique before starting any new inhaler treatment. (This should be age appropriate.). Integration and care coordination standards specifically reference Statement 3 of QS25: People with asthma receive a written personalised action plan. (This should be age appropriate). The standards reference that people should receive a structured review at least annually which reflects Statement 5 of QS25.
In order to help implement the new 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 pace to go to find information on children’s asthma.
Results and evaluation
The vision has been agreed and ambitions, standards and toolkit disseminated wide. The toolkit has been endorsed by the Royal College of GPs and the Royal College of Physicians. The Royal College of Paediatric and Child Health and Primary Care Respiratory Society have circulated it to members. Work is on-going with Royal College of Nursing.
The toolkit is helping drive up standards and saves resource and time by doing things once for London rather than writing 32 different sets of guidelines. Since its Dec 2016 it has had 61,000 page views and 11,500 downloads and 1,881 film views thanks to the associated tweet campaigns to continue to promote it.
The standards and toolkit has already resulted in a number of additional asthma nurse posts and other resources across London through the use of CQUINs.
A baseline audit was sent to all 32 clinical commissioning groups and acute providers. The audit showed significant variation in practice with areas such as schools and out of hospital care being largely RAG rated as red. A re-audit is currently in progress to see what changes have occurred in the last year.
The programme has had positive feedback with one commissioner commenting:
"This resource has saved us five years of work".
The work done to date has been shared widely and received significant attention including sharing via the Fab NHS Academy:
We were also nominated for three categories in the 2017 Nursing Times awards (results awaited).
We have presented our findings both regionally, nationally and internationally, had 3 poster presentations at the Royal College of Paediatric and Child Health conference, presented at the Royal College of Nursing Pharmacists national meeting, National Paediatric Asthma Collaborative conference (NPAC), European Academy of Paediatric Societies in Switzerland and to Primary care
The project lead and NPAC lead were featured in a Nursing article [i] and the pharmacy journal, [ii] The lead has also published an editorial on the importance of digital in the British Journal of Cardiac Nursing [iii] and was recently recognised as a digital pioneer[iv]
[i] Triggle Greater Collaboration vital to treating asthma in the young. Nursing children and young people Feb 16, 28, 1
[ii] Managing childhood asthma Pharmacy Magazine 19 Sep 2016 http://www.pharmacymagazine.co.uk/managing-childhood-asthma
[iv] Digital Pioneer Spotlight: Sara Nelson (2017) http://digitalhealth.london/digital-pioneer-spotlight-sara-nelson/
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 of the management of asthma in CYP. It was crucial that we involved local commissioners and providers (both secondary and primary) and school nurses from across the borough to ensure that the standards were practical and 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). On reflection early 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.