Written evidence submitted by the All-Party Parliamentary Group on Axial Spondyloarthritis (DEL0217)

About the APPG

The All-Party Parliamentary Group (APPG) on Axial Spondyloarthritis (axial SpA) is a special interest group of cross-party MPs and Peers, jointly chaired by Derek Thomas MP and Lord Campbell-Savours. The primary aims of the APPG are to raise awareness of axial SpA (AS) within Parliament and to ensure the widespread and effective implementation of key NICE guidance, including the Quality Standard for Spondyloarthritis. The secretariat for the APPG is being provided by M&F Health, in association with the National Axial Spondyloarthritis Society (NASS).

Executive Summary

The APPG on Axial Spondyloarthritis welcomes this consultation from the Health and Social Care Committee and the opportunity to highlight concerns regarding the impact that the COVID-19 outbreak is having on axial SpA (AS) services and those that rely on them. We are particularly concerned about the difficulties those living with axial SpA (AS) are experiencing when it comes to accessing key elements of care that NICE COVID-19 guidelines state should remain intact. These developments have exacerbated gaps in axial SpA (AS) service provision that were already apparent before the start of the pandemic, and which were highlighted by the APPG’s National Inquiry into axial SpA (AS) services in England.[1]

As plans are put in place to support an easing of social distancing measures, it is vital that national and local decision-makers prioritise making urgent referrals available for axial SpA (AS) patients who are experiencing flare-ups of their condition, with triage systems in place to ensure that the most in need are seen first. Examples of innovative axial SpA (AS) practice that has emerged in recent weeks in response to the pandemic should also be capitalised on, so that learnings can be made more widely available and as many patients as possible can benefit from new ways of working.

It is also important that steps are taken to safeguard service provision in the event of any further outbreaks, with ‘minimum service specifications’ to be considered, the maintenance of which would help ensure an essential level of service function would continue to be available for those with axial SpA (AS), regardless of the reintroduction of social distancing measures.

Consultation Question: How to achieve an appropriate balance between coronavirus and ‘ordinary’ health and care demand  

The APPG and wider axial SpA (AS) community recognises the critical situation caused by the emergence and spread of COVID-19, and the need to prioritise system and service resources to support the response to the outbreak. This has included in many areas core axial SpA (AS) clinicians being redeployed away from rheumatology functions. Whilst this has been important part of the national response, it has led to significant variation across the UK with respect to the level of service that has remained available for those living with axial SpA (AS).

Unfortunately, and as revealed by the first national inquiry into axial SpA (AS) services that was published by the APPG earlier this year, these developments have exacerbated existing inequalities in service provision. Before the start of the lockdown many people living with axial SpA (AS) did not have local access to key elements of NICE-recommended care:

• Only 21% of Clinical Commissioning Groups (CCGs) had a specific inflammatory back pain pathway in place
• More than half of services did not have a specialist axial SpA (AS) clinic in place
• Three-quarters of services did not have direct access to psychological services via secondary care for those who need it
• One-fifth of local services did not have access to a specialist rheumatology physiotherapist
• Almost 90% of services did not offer personalised flare care plans for patients1

These worrying gaps in care for those with axial SpA (AS) are likely to have deteriorated further, and it is important that steps are taken to address these within local responses to achieving an appropriate balance between COVID-19 and ‘ordinary’ health and care demand. This is especially important considering the negative physical and mental health impacts that will have been caused by COVID-19 for those living with axial SpA (AS), whom as a cohort are more likely to experience poorer mental health and physical health outcomes than the wider population.

Considering that axial SpA (AS) is managed largely by physiotherapy combined with medication, an inability to access emergency physiotherapy and hydrotherapy services during lockdown has had a particularly negative impact on those who are suffering flare-ups of the condition, as has the inability to reach rheumatology for a medication review to help during flare.

Despite NICE COVID-19 rapid guideline: rheumatological autoimmune, inflammatory and metabolic bone disorders guideline [NG167] advising that core services remain intact, the National Axial Spondyloarthritis Society (NASS) has reported a >400% increase in helpline calls. Many patients have been unable to reach anyone from their local rheumatology unit to get advice on the risks associated with immunosuppressing drugs used to manage their axial SpA (AS) and how to maintain existing levels of care.

Steps must be put in place to address these issues as a key priority in the coming weeks and months.

Consultation Question: Meeting the wave of pent-up demand for health and care services that have been delayed due to the coronavirus outbreak 

As social distancing measures are eased and services return to more ‘normal’ levels of function, it is essential that the following areas are prioritised in axial SpA (AS):

• urgent referrals for those living with axial SpA who are in flare
• those with symptoms and in need of a diagnosis by a specialist
• those due to be prescribed biologic drugs which can greatly improve their day to day life
• those patients who, without consulting their rheumatologist, had stopped taking their biologic drugs in order to strengthen their immune system

Routine annual review appointments should also be triaged to ensure that those who are deemed most in need are seen in the first instance. This function for those with axial SpA (AS) should ideally be carried out by specialist rheumatology physiotherapists, extended scope practitioners in physiotherapy and rheumatology nurses. The triage process should begin well in advance of any reestablishment of clinics, to ensure that as many urgent patients are seen as soon as it is possible.

Consultation Question: Providing healthcare to vulnerable groups who are shielding 

As services start to return to a ‘baseline’ level of functioning there will likely be significant minorities of axial SpA (AS) patients who will still be unable to attend an appointment in a hospital setting due to shielding. Robust and well-resourced community services to help address this and bring care to those individuals insofar as is possible, will be vital. The use of community phlebotomy and physiotherapy for instance will ensure that patients can be monitored effectively and safely without putting them in danger through leaving their place of abode.

It is also essential that hospital/patient communication is delivered effectively, considering the need to ensure that patients who aren’t shielding but practicing enhanced social distancing should feel reassured that visiting a hospital will not put them at risk.

Consultation Question: How to ensure that positive changes that have taken place in health and social care as a result of the pandemic are not lost as services normalise

It is of vital importance that lessons learned during this pandemic are embedded into service planning in the weeks and months ahead, to strengthen sector resilience and ability to maintain core levels of function in the event of future outbreaks.

Feedback from services across the country show that there have been numerous examples of innovative and rapid service redesign to facilitate maximum patient access and provision of care. In larger units for example, where few staff have been redeployed, virtual appointments have been put in place and new methods of patient contact have been embedded, which has actually helped to increase appointment attendance in some groups (for example men in their 20s to 30s who work full time).

However, reports have also emerged that efforts to innovate have been hampered in some areas due to limited IT infrastructure. Ensuring that robust IT systems are in place in rheumatology services in all parts of the country is essential, underpinned by effective coding that enables quick and accurate patient identification. Rheumatology teams in some areas have in recent weeks reported the difficulty they have had in identifying patients who should be shielding due to limitations in coding and IT. A task that should have taken several hours if effective coding were in place has taken weeks instead, requiring each patient record to be looked at individually and a decision made on an individual basis. Coding would also help to establish the patients most in need of an appointment when services start up again, helping with the triage process.

Working with other stakeholders, the APPG intends to support efforts to gather the positive and negative developments that have occurred in axial SpA (AS) since the start of the outbreak, which we hope can help to inform the development of ‘minimum service specifications’ in axial SpA (AS). If adopted, these specifications would help to build service provision and workforce resilience in the sector, and safeguard care delivery in the event of future outbreaks.

May 2020