A new approach to an old disease: delivering specialist care to children with Tuberculosis close to home

This links to all 5 aspects of the framework

1) Commit to action on inclusion health

2) Understand the characteristics and needs of inclusion health groups locally

3) Develop the workforce for inclusion health

4) Developing integrated and accessible services for inclusion health

5) Demonstrate impact and improvement for inclusion health

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Organisation: This work was developed by the Northwest Paediatric TB managed clinical network, which draws its membership from all organisations that deliver paediatric TB care and the UK Health Security Agency. Our network is hosted by Manchester University Foundation NHS Trust.

The challenge: Tuberculosis is a serious communicable disease which can spread through communities. Significant health inequalities exist in the incidence and outcome from TB in the UK; the most deprived 10% population has an incidence seven times higher than the least deprived 10%. Untreated it can cause debilitating multi-organ disease and death. Fortunately, if the diagnosis is made promptly, a complete cure with no long-term sequelae can be achieved in the majority of cases. Delays in diagnosis, incomplete treatment, drug resistance, underlying comorbidities and extremes of age are associated with poor outcomes. Compared with adults, children have a less effective immune response to TB so, when exposed to an infectious case they are more likely to become infected, more likely to develop TB disease and more likely to develop severe and life-threatening forms of TB e.g., meningitis. Local coroner feedback identified that a number of local deaths from TB could have been prevented.

As we started this process there was clinical concern with 27% of children referred to the tertiary centres had long term sequelae and 3 deaths were seen in a 12-month period- to which the coroner gave feedback on. Children and young people were travelling long distances to receive their care and engagement levels were low. There was a concern at the start that such an approach would centralise patient care in tertiary centres and through delivering this model this has been proven not to be the case.

Our approach involves North Wests Trusts including TB nurses, adult and paediatric medical staff the UK Health Security Agency, commissioners and charity partners.

• National Strategy for TB was driven by the NHS England/PHE Collaborative Strategy for TB and now the TB Action plan 2021-2026. The Northwest has relatively low rates of TB disease (6.2 per 100,000 population) but very large and increasing numbers of new entrants from countries with high TB incidence.
• The diagnosis of TB is also more difficult in children due to low bacteriological yields and difficulties obtaining samples for culture. Lack of standardised paediatric drug preparations also makes children more difficult to treat than adults.
• In order to achieve good outcomes in children, it is essential that effective mechanisms are in place to identify, investigate and treat children at risk of TB promptly. This requires a level of expertise which can be difficult to maintain when numbers are small; hence clinical consensus was gained to develop a network approach which ensures good outcomes, as local as possible to home, supported by audit (cohort review) and education.

The approach/solution: This work was identified and overseen by the Northwest TB control Board and Northwest paediatric partnership board and delivered by the Northwest Paediatric Allergy and infection network to deliver a Northwest paediatric TB network. A task and finish group was set up, which represented all areas involved and this group took a step wise approach to delivery, setting up and delivering a weekly virtual MDT clinic. This allowed the service to be set up quickly and establish a working system by determined and focused individuals. Outcomes were agreed.

Network members have together worked through what is needed and how this can be delivered which leads to excellent care. From day 1 there has been clear medical, nursing and managerial leadership both from the NHS and UKHSA. Any challenge or barrier has been worked through in a collaborative approach. The team has learnt from what has not worked to establishing a solution which is effective.

This pioneering approach is delivered by empowered healthcare professionals through a clinically agreed pathway, audit, education and a virtual clinic (between healthcare professionals).

Insights and Impacts: This has been commissioned by Greater Manchester TB collaborative, (now Greater Manchester Integrated care partnership) and has run since 1^st November 2017. The virtual clinic runs as a weekly teleconference, underpinned by clinical documentation.

Our patient data from 2021 showed that:

• 118 discussions for 57 patients were held
• 21 children had TB disease
• 19 had Latent TB infection
• 17 had a final non-TB diagnosis.

Referrals were received from 12 district general hospitals and their associated TB specialist nurses. Advice was sought for a variety of reasons, there could be more when one source of advice requested:

• 20 investigation
• 10 treatment
• 14 radiology interpretation
• 9 screening

This resulted in 61% change in management and a reduction in delays when staff were away on planned or unplanned leave. Transfer from tertiary centres to district general hospitals was able to take place earlier and more rapidly.

87% of families discussed in this service come from the top 20% most deprived postcodes as described by the index of multiple deprivations with a number of challenges to accessing services, ensuring that care is kept locally increases local clinical knowledge and reduces lack of compliance or attendance with treatment.

Our model has been picked up in whole or part in other areas of the UK, and now the audit approach is being delivered other areas for TB and is now being explored to deliver drug and alcohol services in other areas. The British Association of TB shared such an approach, and it is great to see other areas such as the Northeast work from our clinical guidelines and enhance them for local adaptation and we have utilised this development for the Northwest. This approach was selected by the 2019 HSJ value awards as a finalist, and the impact of the approach was commented on as excellent by the Care quality commission.

The model being developed is being utilised to advocate a similar approach for the assessment and management of adult TB as professional exposure reduces alongside the number of adult affected.

The concepts utilised here are outlined in the NHS long term plan and NHS Inclusion Health Framework and it has been great to see clinical agreement in developing services being the first and only driver for the development of services.

When variation of approaches has been identified these have been resolved with local teams include children whose assessment and treatment did not involve a paediatrician, dividing families to be assessed into different streams for children and adults. A robust governance process is in place with clear escalation routes depending on the variance of care e.g., patients diagnosed with respiratory TB not started on treatment will have UKHSA are notified.

One of the most important parts of innovation and working across organisational boundaries is taking time to pause and note progress and celebrate success. Thank you to everybody who has been part of the journey to date.

Tips and Success:

Having both management and clinical leadership from all areas is important from the outset. Creating a culture which is open and honest is central to this. This model did not stop at any point during the Covid-19 pandemic and has created a culture of development and support of each other.

We actively welcome anyone wishing to explore this model to get in touch and see this model in action.

What next:

We continue to deliver all aspects of our programme with a continued focused on improving quality and clinical outcomes for our children and young people through our audit process. Increasing numbers are coming through the northwest through changes to migratory patterns and population movement through world events including the fall of Afghanistan and war in Ukraine. Securing funds to maintain this stability is underway.

What people said

TB Specialist Nurses	“From my experience, the virtual clinic has been invaluable in the management of paediatrics with TB or contacts of TB I am very grateful for all of the help and support the team have offered to me which in turn has increased my confidence with paediatrics” I feel the suggestions and support from all of the specialists was invaluable to us TB Nurses and I am sure we will call on you again “Building on last year’s Paediatric Cohort audit day, this year saw a very positive response to continuing to improving outcomes for children with active and latent TB”
Stephen Dickson Chief Executive, Royal Manchester Children’s Hospital	“The drive from our clinicians working collaboratively across the Northwest has ensured that this vulnerable group of children receive their care as locally as possible giving them the best outcomes. It is an excellent example of the adoption of technology to improve care, which has already come to be invaluable in providing immediate resilience within the Northwest during the COVID-19 Pandemic”
Dr Sarah Anderson When she was National Lead for TB Strategy Chair of National TB Delivery Board	This is a truly innovative way of delivering child centred care. This virtual MDT for clinicians remote from a specialist centre has improved patient care, revolutionised travelling times and increased local knowledge of TB. The National TB Programme are now sharing it as an exemplar of best practise”