Services for people with rheumatoid arthritis - Public Accounts Committee Contents


4. Memoandum from National Rheumatoid Arthritis Society (NRAS)

INTRODUCTION

  The National Rheumatoid Arthritis Society (NRAS) welcomes the recommendations of the National Audit Office report into Services for people with rheumatoid arthritis, many of which reflect the concerns raised in the King's Fund Report on behalf of the Rheumatology Futures Group.[23]

  We agree with the NAO that action needs to be taken to improve overall outcomes for people with rheumatoid arthritis (RA), in particular by implementing the NICE Clinical Guideline on RA which was published in February 2009,[24] and to promote the commissioning of RA services in line with the IA commissioning pathway which is available on the DH 18 week website.

  It is widely recognised that early diagnosis and appropriate treatment can decrease the risk of joint damage thereby maintaining the mobility of people with RA for longer and avoiding costly and unnecessary surgery.

  The NAO's own modelling has identified that a person treated within three months rather than four months could see an improvement in quality of life by around 4% over the first five years, as measured by quality adjusted life years (QALY) gained.[25]

  NRAS was therefore concerned but not surprised by the NAO's research which shows that delays in the system are contributing to late diagnosis and treatment and poorer outcomes for people with RA. These delays are also contributing to the inefficient use of health services resources and productivity losses for the economy.

  We have outlined below our concerns and the recommendations from the NAO report that we believe require urgent attention and that the Public Accounts Committee should address in their inquiry.

RECOMMENDATIONS

1.   The Department of Health, PCTs and Royal Colleges should improve GP awareness of RA to reduce costly delays in the system

    — GPs are the gatekeepers to specialist diagnosis and treatment yet, as the NAO recognises, people with RA visit a GP on average four times before being referred to a specialist and 18% more than eight times.[26] This is not only causing poor clinical outcomes for people with RA but is also costing the NHS £6 million a year in unnecessary, repeated visits.[27]

    — The current management of people of RA, as revealed by the NAO's research, appears to be inconsistent with the Department of Health's policy to move treatment of long-term conditions into primary care rather than reactive acute care. Supporting People with Long term Conditions called for a move away from "reactive, unplanned and episodic approach to care" and for people to be treated, "sooner, nearer to home and earlier in the course of the disease."[28] It is however important that the Committee realise that whilst we welcome greater integration of services between primary and specialist care and there are some things which GPs are well placed to undertake such as CV risk assessment and monitorinig of RA patients, people with RA will continue to require access to specialist care, as needed, throughout the lifetime of their disease.

    — The Public Accounts Committee therefore may want to ask how the Department of Health plans to address poor GP awareness and what discussions officials have had with Royal Colleges regarding the inclusion of rheumatoid arthritis in continued professional education as recommended by the NAO.[29]

2.   The Department of Health should undertake a public awareness campaign on the signs and symptoms of RA to encourage early presentation.

    —  Low public awareness is compounding the problem of late diagnosis and treatment for people with RA. As the NAO has identified, between half and three quarters of people with RA delay seeking medical help from their GP for three months or more following the onset of symptoms. A fifth of patients delay seeking help for a year.[30]

    —  The NAO has identified that this could be addressed by increasing the number of people diagnosed with RA in the first three months from the current 10%:

    "Our economic modelling suggests increasing this to 20% could initially increase costs to the NHS by £11 million over five years due to higher expenditure on drugs and the associated costs of monitoring people with the disease (after around nine years, earlier treatment could become cost neutral to the NHS). This increase in earlier treatment could, however, result in productivity gains of £31 million for the economy due to reduced sick leave and lost employment." [31]

    — The Public Accounts Committee therefore may want to ask Department of Health officials what assessment the Department has made of the cost-effectiveness of an RA public awareness campaign in light of the NAO's estimate of the productivity savings that could be delivered through earlier diagnosis and treatment of people with RA.[32]

3.   Musculoskeletal services are an inefficient area of health service spending

    — In the last year, NHS expenditure on musculoskeletal conditions increased from £3.5 billion to almost £4.1 billion—an increase of over 15%—even though improvements in outcomes were not delivered by this extra spending.[33]

    — One critical factor in the success of national frameworks in other therapeutic areas has been the presence of national clinical leadership to drive change (eg in cancer, diabetes, mental health, and cardiac care). However, there is no such National Clinical Director to drive progress in musculoskeletal services unlike in other areas. Even though liver disease consumes around half the NHS resources currently accounted for by musculoskeletal conditions, the Department of Health announced on 20 October that it was appointing a National Clinical Director for Liver Disease.

    — The Public Accounts Committee may wish to consider asking Department of Health officials whether greater clinical leadership at the national level will improve the efficiency of resource spending for RA.

4.   Delays in referral to specialists should be addressed to improve timely access to appropriate treatment

    — NRAS recognises the importance of early and aggressive treatment for RA which can reduce the need for costly procedures such as joint surgery and maintain mobility for longer. Delays in referral to specialists are preventing people with RA getting access to appropriate treatment early enough.

    — A study published in 2002, cited in the NAO report, found that 11% of people with rheumatoid arthritis on conventional drug therapy (ie not biologics) will need joint surgery within five years of treatment.[34] It also found that within five years of treatment, between 10 to 15% of people went into remission with no evidence of persistent disease.[35]

    — The Public Accounts Committee therefore may want to ask Department of Health officials what plans they have to communicate to PCTs and health care professionals "the benefits to long-term health and the economy of early treatment of people with rheumatoid arthritis."[36] 4

5.   Variations in the quality of RA Services should be urgently looked at

    — NRAS is concerned by the variations in quality of RA services identified in the NAO report. The NAO's audit has revealed wide variations in provision of services, due to capacity issues around appointing staff in MDTs. Only 14% of acute trusts provided access to psychological services despite the fact that depression is common amongst people with RA.[37]

    — RA services should be commissioned on the basis of a thorough assessment of local need. However, the NAO report revealed that 71% of PCTs had not carried out a local needs assessment for rheumatology services overall and 73% had not undertaken any assessment to establish the number of people with RA living in the locality.[38]

    — The failure to conduct needs assessments may contribute to the wide variations in spending on RA services, which in turn may contribute to the variations in service quality. NRAS has undertaken an analysis of the level of spending on rheumatoid arthritis services in each PCT area (reproduced in the annex) which reveals that spending on RA services varies in different PCT areas from £5.68 per head in Bexley PCT to £17.58 per head in Gateshead PCT—a great-than-threefold variation—with an England average level of £10.97 per head.

    — NRAS is unable to conduct an assessment to ascertain whether there is any correlation between levels of spending and service quality since the findings of the NAO's survey of the quality of acute care are anonymised. The Public Accounts Committee may wish to consider investigating this directly, or asking the Department of Health to do so.

    — Furthermore, the variable quality of services can be explained by the absence of musculoskeletal conditions from the national levers the Department of Health uses to influence the direction of local policy. For example, the Department of Health's flagship World Class Commissioning programme list 54 national indicators—from which PCTs are able to pick and choose according to their local priorities, and against which their progress will be measured—but none relate to musculoskeletal conditions.[39]

    — The Public Accounts Committee should consider asking Department of Health officials how it plans to measure the outcomes of local RA service delivery to ensure the consistent implementation of national guidance. The IA commissioning pathway, which references the NICE RA Guidelines published earlier this year, would be a suitable benchmark for PCTs to use here, but there will undoubtedly be PCTs who are unaware of its existence.

6.   People with RA are not being given sufficient support to stay in work creating a financial burden for both society and the individual

    — The NAO estimated that for the cost to the economy of sick leave and work-related disability for people with RA is £1.8 billion a year,[40] which is substantially more than the NHS costs associated with treating RA.

    — NRAS believes that in addition to earlier diagnosis and treatment, people with RA could be better supported in staying in work. Only 20% of those surveyed by the NAO stated that they had received sufficient information about employment issues and that services to support patients in work were the "least effective services compared with other aspects of their care." Only 12% of GPs surveyed offered people diagnosed with RA information on staying in work.[41]

    — Our own research has shown that once on Incapacity Benefit (now known as the Employment and Support Allowance) 80% of people with musculoskeletal conditions never return to work.[42]

    — The Public Accounts Committee should therefore consider asking Department of Health officials how they plan to encourage PCTs to establish clearer links with Jobcentre Plus services and ensure adequate provision of holistic care for people with RA.[43]

7.   The NAO survey of 1,400 people with rheumatoid arthritis found there is a lack of coherence in the support and information available to help them self-manage their condition

  As with the findings of the earlier Kings Fund report, the NAO report found that people wanted more information about living with RA and 59% agreed that having access to a named individual to whom they could turn when in need and/or experiencing a flare would be extremely beneficial. One of the key NRAS priorities is to "empower" people with RA by teaching them more about their disease and providing them with timely information and support to enable them to self manage their disease more effectively. A key part of our strategy to improve patient self management in RA has been to partner with EPPCIC (Expert Patients Programme) to develop an RA specific self management programme which was successfully piloted in three locations in England in early 2009. It is anticipated that this programme will be ready for commissioning mid 2010.

Annex

ESTIMATED EXPENDITURE OF RHEUMATOID ARTHRITIS SERVICES PER HEAD OF POPULATION, BROKEN DOWN BY PRIMARY CARE TRUST AREA

  The following is an analysis of expenditure on rheumatoid arthritis services per head of population in each Primary Care Trust area in England. It is calculated as follows:

    — The second column shows the total amount each PCT spent on musculoskeletal services in the 2007-08 year, and is taken directly from the Department of Health's programme budgeting data.[44]

    — Across England, total programme spend on musculoskeletal conditions in 2007-08 was £3,848,281,000. The National Audit Office estimates that total expenditure on RA services in 2007-08 was £557,000,000[45]—suggesting that 14.5% of expenditure on musculoskeletal services was on rheumatoid arthritis services.

    — The third column in the table below therefore multiplies each PCT's expenditure on musculoskeletal services by 0.145 (ie a percentage of 14.5%) to find each PCT's expenditure on RA services.

    — The fourth column divides each PCT's expenditure on RA services by its resident population,[46] giving each PCT's spend per head on RA services

    — The table shows that spending on RA services ranges from £5.68 per head in Bexley PCT to £17.58 per head in Gateshead PCT—a greater-than-threefold variation—with an England average of £10.97.


Primary Care Trust

Expenditure on
musculoskeletal
services in
2007-08 (£000s)

Estimated
expenditure on
rheumatoid
arthritis (£000s)


Total
population
Estimated
expenditure on
rheumatoid arthritis
services per head of
population (£)


Bexley Care Trust
£8,268 £1,197210,846 £5.68
Camden PCT£9,596 £1,389232,476£5.97
Luton PCT£8,311 £1,203185,044£6.50
Ealing PCT£14,614 £2,115320,247£6.60
Hounslow PCT£10,367 £1,501220,839 £6.79
Barking and Dagenham PCT£7,867 £1,139165,224 £6.89
Brent Teaching PCT£13,354 £1,933279,831 £6.91
City and Hackney Teaching PCT£10,523 £1,523220,479 £6.91
Richmond and Twickenham PCT£8,385 £1,214172,967 £7.02
Redbridge PCT£11,764 £1,703239,977 £7.10
South West Essex PCT£19,575 £2,833397,364 £7.13
Hammersmith and Fulham PCT£8,409 £1,217169,996 £7.16
Westminster PCT£12,072 £1,747234,500 £7.45
Wandsworth PCT£14,873 £2,153280,145 £7.68
Kensington and Chelsea PCT£10,187 £1,474190,514 £7.74
Bradford and Airedale PCT£26,670 £3,860497,635 £7.76
South East Essex PCT£17,948 £2,598333,348 £7.79
Solihull Care Trust£11,131 £1,611206,552 £7.80
Mid Essex PCT£19,364 £2,803356,281 £7.87
Leicester City PCT£17,147 £2,482308,699 £8.04
Bedfordshire PCT£23,096 £3,343411,716 £8.12
West Hertfordshire PCT£30,332 £4,390536,390 £8.18
Kirklees PCT£22,372 £3,238391,969 £8.26
Wakefield District PCT£19,045 £2,757333,186 £8.27
Berkshire East PCT£22,056 £3,192384,225 £8.31
Blackpool PCT£8,173 £1,183140,104 £8.44
Telford and Wrekin PCT£9,516 £1,377160,910 £8.56
Islington PCT£11,079 £1,604187,275 £8.56
Calderdale PCT£11,877 £1,719200,421 £8.58
Suffolk PCT£34,858 £5,045587,972£8.58
Leeds PCT £45,813 £6,631767,081£8.64
Croydon PCT£20,313 £2,940335,142£8.77
Portsmouth City Teaching PCT£12,231 £1,770199,522 £8.87
East and North Hertfordshire PCT£34,163 £4,945549,793 £8.99
Buckinghamshire PCT£30,897 £4,472496,622 £9.00
Kingston PCT£10,842 £1,569172,013 £9.12
Southwark PCT£16,413 £2,376258,245 £9.20
Medway PCT£16,975 £2,457265,207£9.26
Cambridgeshire PCT£36,949 £5,348577,074 £9.27
Havering PCT£15,276 £2,211237,212 £9.32
East Riding Of Yorkshire PCT£19,703 £2,852304,296 £9.37
Doncaster PCT£19,016 £2,752293,143 £9.39
Hull PCT£18,187 £2,632280,044£9.40
West Kent PCT£43,203 £6,253662,250 £9.44
Manchester PCT£32,085 £4,644485,511 £9.57
North Tyneside PCT£13,504 £1,955204,085 £9.58
North Lincolnshire PCT£10,542 £1,526158,259 £9.64
Liverpool PCT£29,696 £4,298443,988 £9.68
Greenwich Teaching PCT£15,423 £2,232230,462 £9.69
Lambeth PCT£19,502 £2,823289,747£9.74
Enfield PCT£18,076 £2,616267,869£9.77
Darlington PCT£6,631 £96098,203£9.77
County Durham PCT£34,556 £5,002509,491 £9.82
Sheffield PCT£36,525 £5,287534,251 £9.90
Hampshire PCT£85,266 £12,3411,235,910 £9.99
Berkshire West PCT£31,766 £4,598455,101 £10.10
Derbyshire County PCT£48,630 £7,039692,696 £10.16
Stoke On Trent PCT£18,211 £2,636258,117 £10.21
South Staffordshire PCT£41,309 £5,979583,057 £10.25
West Essex PCT£18,563 £2,687261,656 £10.27
Worcestershire PCT£38,780 £5,613545,377 £10.29
Harrow PCT£14,239 £2,061198,505£10.38
Bristol PCT£30,762 £4,452428,124£10.40
North East Lincolnshire Care Trust£11,853 £1,716163,551 £10.49
Sutton and Merton PCT£27,511 £3,982377,654 £10.54
North Yorkshire and York PCT£55,919 £8,094767,344 £10.55
Rotherham PCT£17,781 £2,574243,888 £10.55
South Birmingham PCT£25,331 £3,666347,014 £10.57
Torbay Care Trust£10,211 £1,478139,121 £10.62
North East Essex PCT£23,355 £3,380317,972 £10.63
Great Yarmouth and Waveney PCT£16,281 £2,357220,674 £10.68
Lewisham PCT£18,996 £2,749257,419 £10.68
Haringey Teaching PCT£17,792 £2,575240,403 £10.71
Bromley PCT£22,622 £3,274303,504£10.79
Cornwall and Isles Of Scilly PCT£39,395 £5,702525,942 £10.84
Tower Hamlets PCT£16,073 £2,326214,523 £10.84
Northamptonshire PCT£50,287 £7,279660,508 £11.02
Bournemouth and Poole PCT£24,842 £3,596321,235 £11.19
Bury PCT£14,086 £2,039182,116£11.20
Wiltshire PCT£33,732 £4,882434,921 £11.23
Nottingham City PCT£23,709 £3,432305,234 £11.24
Brighton and Hove City PCT£20,263 £2,933259,100 £11.32
Barnet PCT£26,126 £3,781331,471£11.41
East Lancashire PCT£29,537 £4,275373,519 £11.45
Isle of Wight NHS PCT£10,947 £1,584137,985 £11.48
Herefordshire PCT£13,871 £2,008174,778 £11.49
Peterborough PCT£11,884 £1,720149,603 £11.50
South Gloucestershire PCT£19,257 £2,787242,175 £11.51
West Sussex PCT£61,650 £8,923773,856 £11.53
Sandwell PCT£24,054 £3,482301,397 £11.55
Bassetlaw PCT£8,517 £1,233106,594 £11.56
North Staffordshire PCT£16,342 £2,365204,101 £11.59
Warwickshire PCT£41,377 £5,989516,157 £11.60
Leicestershire County and Rutland PCT£51,892 £7,511645,279 £11.64
Coventry Teaching PCT£25,972 £3,759322,771 £11.65
Walsall Teaching PCT£20,099 £2,909249,756 £11.65
Northumberland Care Trust£25,165 £3,642311,274 £11.70
Birmingham East and North PCT£32,196 £4,660398,186 £11.70
Heywood, Middleton and Rochdale PCT£16,539 £2,394203,963 £11.74
Gloucestershire PCT£47,058 £6,811579,098 £11.76
Warrington PCT£15,740 £2,278192,778 £11.82
Waltham Forest PCT£18,725 £2,710228,251 £11.87
Oxfordshire PCT£50,412 £7,297612,823 £11.91
Dudley PCT£24,837 £3,595301,297£11.93
Lincolnshire PCT£58,350 £8,446698,635 £12.09
Halton and St Helens PCT£25,512 £3,693304,194 £12.14
Surrey PCT£90,124 £13,0451,072,388£12.16
Swindon PCT£16,195 £2,344192,541£12.17
Shropshire County PCT£24,050 £3,481285,158 £12.21
Norfolk PCT£61,094 £8,843723,638£12.22
Hillingdon PCT£20,365 £2,948240,291 £12.27
Dorset PCT£32,906 £4,763382,266£12.46
Wolverhampton City PCT£20,463 £2,962237,535 £12.47
South Tyneside PCT£13,037 £1,887150,957 £12.50
Trafford PCT£18,223 £2,638210,704 £12.52
Central and Eastern Cheshire PCT£38,943 £5,637445,787 £12.64
Tameside and Glossop PCT£19,835 £2,871225,259 £12.74
North Tees PCT£16,689 £2,416188,522 £12.81
Middlesbrough PCT£12,781 £1,850144,105 £12.84
Bolton PCT£23,404 £3,387262,529£12.90
Blackburn with Darwen PCT£13,512 £1,956151,187 £12.94
Heart of Birmingham Teaching PCT£25,502 £3,691282,156 £13.08
Stockport PCT£25,502 £3,691281,488 £13.11
Devon PCT£66,378 £9,608732,201£13.12
Newcastle PCT£23,711 £3,432260,861 £13.16
Derby City PCT£24,729 £3,579271,023 £13.21
Newham PCT£23,604 £3,416254,504£13.42
Sefton PCT£25,640 £3,711270,639£13.71
Hartlepool PCT£8,662 £1,25491,132£13.76
Eastern and Coastal Kent PCT£68,302 £9,886715,899 £13.81
Sunderland Teaching PCT£26,183 £3,790273,990 £13.83
Cumbria PCT£48,141 £6,968502,103£13.88
North Somerset PCT£19,373 £2,804201,811 £13.89
Knowsley PCT£14,653 £2,121150,286 £14.11
North Lancashire PCT£31,912 £4,619326,341 £14.15
Nottinghamshire County PCT£62,796 £9,089638,935 £14.23
Western Cheshire PCT£24,205 £3,503245,689 £14.26
Central Lancashire PCT£43,959 £6,363438,711 £14.50
East Sussex Downs and Weald PCT£32,783 £4,745326,732 £14.52
Milton Keynes PCT£23,346 £3,379232,448 £14.54
Redcar and Cleveland PCT£13,359 £1,934132,813 £14.56
Salford PCT£22,473 £3,253222,861£14.60
Hastings and Rother PCT£18,137 £2,625171,398 £15.32
Oldham PCT£23,714 £3,432222,362£15.44
Barnsley PCT£24,698 £3,575231,551 £15.44
Bath and North East Somerset PCT£19,883 £2,878186,018 £15.47
Plymouth Teaching PCT£26,830 £3,883250,297 £15.52
Ashton, Leigh and Wigan PCT£32,870 £4,758301,596 £15.77
Somerset PCT£56,685 £8,205513,108 £15.99
Wirral PCT£34,407 £4,980309,821£16.07
Southampton City PCT£27,679 £4,006245,611 £16.31
Gateshead PCT£23,570 £3,412194,043 £17.58
England Average £10.97

INFORMATION ABOUT NRAS

  NRAS is the only charity in the UK dedicated to working towards a better quality of life for people with RA specifically (as opposed to other forms of arthritis).

  NRAS has a national network of volunteers (400), people living with RA, who support the charity in a wide variety of ways and provide peer to peer telephone support.

  NRAS has helpline which operates Monday—Friday, a comprehensive and informative website and a range of publications and information sheets available for both people with RA and the health professionals who treat them.

November 2009
























http://www.dh.gov.uk/en/Managingyourorganisation/Financeandplanning/Programmebudgeting/DH_075743?IdcService=GET_FILE&dID=200999&Rendition=Web




23   The King's Fund, A Consultancy Report by The King's Fund for the Rheumatology Future's Group: Perceptions of patients and professionals on rheumatoid arthritis care, January 2009. Back

24   National Institute for Health and Clinical Excellence, Rheumatoid arthritis: The management of rheumatoid arthritis in adults, February 2009. Back

25   National Audit Office, Services for people with rheumatoid arthritis, July 2009, page 25. Back

26   Ibid page 5. Back

27   Ibid page 15. Back

28   Department of Health, Supporting people with long-term conditions, January 2005. Back

29   National Audit Office, Services for people with rheumatoid arthritis, July 2009, page 9. Back

30   Ibid page 9. Back

31   Ibid page 9. Back

32   Ibid page 9. Back

33   Department of Health, Programme budgeting data 2007-08, 16 July 2009. Back

34   Ibid page 4. Back

35   National Audit Office, Services for people with rheumatoid arthritis, July 2009 page 4. Back

36   Ibid page 10. Back

37   Ibid page 26. Back

38   Ibid page 34. Back

39   Health Mandate, National priorities, local action, July 2009. Back

40   Ibid page 5. Back

41   Ibid page 32. Back

42   National Rheumatoid Arthritis Society, I want to work... Employment and rheumatoid arthritis, a national picture, 2007 page 8. Back

43   National Audit Office, Services for people with rheumatoid arthritis, July 2009, page 10. Back

44   Department of Health, Programme budgeting data, 16 July 2009; available here: Back

45   National Audit Office, Services for people with rheumatoid arthritis, July 2009, page 15. Back

46   NHS Information Centre, Attribution dataset GP registered populations 2008, 30 January 2009. Back


 
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