Health CommitteeWritten evidence from the National Ankylosing Spondylitis Society (NASS) (LTC 45)

Summary

Ankylosing Spondylitis (AS) is a painful, progressive form of inflammatory arthritis which affects two—five adults per 1,000 in the UK, or approximately 200,000 people.

This is around twice the number of people with MS, but AS is much less well known. It is one of a huge range of musculoskeletal disorders (MSDs) which although come under the Department of Health’s definition of a long term condition, have been highly under prioritised by the NHS, often in the past having been ignored by PCTs as a long term condition.1

Key problems are inadequate training on MSDs in primary care, insufficient awareness of MSDs, delayed diagnosis and referral for specialist treatment and ill-defined patient pathways. All of these key problems apply directly to people with AS’s experience of care in the UK.

Of all health conditions, MSDs are the single biggest cause of disability in the UK, at 31.3%—nearly one third of the entire burden of disability. When combined with mental health disorders, which is often the case with chronic painful musculoskeletal conditions and depression, they make up over half the total burden of disability.

1. Despite there being over 200,000 people in the UK with ankylosing spondylitis there are currently no NICE quality standards or clinical guidelines that cover this incurable, lifelong and painful condition. We strongly believe the lack of clinical guidelines on AS to be exacerbating the long delays in diagnosis experienced by people with AS. We also believe that the current low awareness of AS amongst healthcare professionals at primary care level would be significantly improved by the introduction of clinical guidelines, which would also help more patients access the right treatment at the right time.

2. There are currently only two NICE Technical Appraisals on AS, TA143 and TA233, but these are drug therapies that have been approved by NICE for people with “severe active” AS. The NICE guidance on low back pain (CG 88) does in fact specifically preclude ankylosing spondylitis with its definition of “the management of pain that has lasted for longer than six weeks but less than a year”. The 200,000 people with AS in the UK are therefore left with very little NICE guidance, which currently only covers those most severely affected by the condition. AS is not a rare condition, affecting one in 200 people and therefore it seems grossly unfair that there are Department of Health recommendations with NICE for quality standards for both Parkinson’s disease and multiple sclerosis both which affect fewer people than AS.

3. The lack of specific NICE clinical guidance on AS makes it very unlikely that NICE Quality Standards on AS will be developed and outcomes measured in the near future and this has been recently confirmed on the 25th February 2013 by the Minister for Health, Norman Lamb MP in an adjournment debate at the House of Commons. 

4. AS is often missed by GPs and the average delay from symptom onset to diagnosis is a shocking eight and eleven years. In this time irreversible spinal damage has often occurred and opportunities to ensure that the patient’s quality of life is optimised have been lost. Back pain is the second most common reason for visiting a GP, therefore inflammatory back pain (IBP), which is relatively rare, can get missed. Traditional screening criteria for back pain often do not consider IBP as a diagnosis.

5. NASS has published a good practice guide for the diagnosis and treatment of AS written by a group of experts, including both rheumatologists and physiotherapists. This report, called “Looking Ahead” can be read at http://www.nass.co.uk/research/published-reports/and it makes important recommendations.

6. NASS wants all GPs to consider the ASAS criteria2 for early AS in all patients who are less than 40 and who have had back pain for more than three months. These criteria should be widely publicised to GPs and integrated in all IT systems and technology used by GPs when assessing a patient. GPs should also be encouraged to search their databases for all patients under 40 with back pain for longer than three months and reassess their diagnoses according to these criteria.

7. If the ASAS criteria are met immediate referral should be made to a rheumatologist and MRI scans should be used to establish an early diagnosis before waiting for damage to the skeleton to show up on an x-ray. Early diagnosis allows early access to specialist treatment, including physiotherapy and hydrotherapy which are central to the treatment of AS.3 Biological therapies, or anti-TNF drugs, can also often effectively manage the disease and prevent costly recurring visits to the GP. They are also more likely to enable that person to stay in work and be economically active. They should, therefore, be made available to all patients who meet the NICE criteria.

8. Once a diagnosis has been established it is important that patients receive regular follow up. Recent research found that at least a third of patients with a confirmed diagnosis of AS are not receiving any secondary care follow up.4 This must be addressed so that all people with AS have access to the best treatment options available and therefore benefit from improved disease outcomes.

9. We have been heartened to hear that in discussions with Martin McShane and his team in Domain 2 of the NHS Outcomes Framework has adopted a framework known as the “House of Care” in order to try and make person-centred care a reality for people. We sincerely hope that patient led, voluntary organisations like NASS are included in the building of services making this “person-centred care” rhetoric a reality by emphasising the importance of listening to each individual patient and their goals, creating outcome measures based on their actual experiences rather than what services are available.

10. Regular exercise is a cornerstone of treatment for someone with AS and also reduces the need for unplanned outpatient appointments. NASS runs a network of over 85 local branches throughout the UK. These branches provide access to at least 40 hours of group physiotherapy and hydrotherapy each year—that’s almost seven times the average number of hours provided by the NHS. This represents a resource for patients that should be used by commissioners. We believe that our branch network demonstrates what can be achieved by a charity working in partnership with the NHS, however these community groups are often under threat from hydrotherapy pool closures and hospitals starting to charge to use facilities out of hours.

11. Self-care, such as that supported by our branch network, is crucial in long term conditions like AS and is also cost effective for the NHS. The Department of Health’s Musculoskeletal Framework published in 2006 and more recently the national outcome for Domain 2, highlights the importance of self-care in helping patients stay healthy and reducing the risk of new problems. Despite this many PCTs in the past have not provided information to patients to support self-care, or worked with voluntary organisations to support patients with these conditions. We are hopeful that this status quo will not continue with the Clinical Commissioning Groups.

12. Clinical Commissioning Groups and Health and Wellbeing Boards must all gain a better understanding of AS and properly recognise need in local areas. Commissioners should be encouraged to provide education and training on AS and support an improvement to GP training in this area. Commissioners should also provide information to patients on self-management of their conditions.

9 May 2013