NRAS submission to the Public Accounts Committee Inquiry into services for people with rheumatoid arthritis

 

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.[1]

 

· 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[2], 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 four per cent over the first five years, as measured by quality adjusted life years (QALY) gained.[3]

 

· 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

 

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. [4] 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.[5]

 

· 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."[6] 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. [7]

 

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.[8]

 

· 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 per cent 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."[9]

· 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. [10]

 

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.[11]

 

· One critical factor in the success of national frameworks in other therapeutic areas has been the presence of national clinical leadership to drive change (e.g. 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.

 

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 (i.e. not biologics) will need joint surgery within five years of treatment. [12] It also found that within five years of treatment, between 10 to 15 per cent of people went into remission with no evidence of persistent disease.[13]

 

· 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." [14]

 

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. [15]

 

· 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.[16]

 

· 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.[17]

 

· 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.

 

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[18], 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.[19]

 

· 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.[20]

 

· 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.[21]

 

The NAO survey of 1400 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 3 locations in England in early 2009. It is anticipated that this programme will be ready for commissioning mid 2010.

 

 

For further information on any of the issues we have raised in this briefing, please contact our Government Affairs Manager, Jenny Snell on 01628 823524 or by emailing [e-mail].

 

 

 

 

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[22]

 

· 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[23] - 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[24], 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	£1,197	210,846	£5.68
Camden PCT	£9,596	£1,389	232,476	£5.97
Luton PCT	£8,311	£1,203	185,044	£6.50
Ealing PCT	£14,614	£2,115	320,247	£6.60
Hounslow PCT	£10,367	£1,501	220,839	£6.79
Barking and Dagenham PCT	£7,867	£1,139	165,224	£6.89
Brent Teaching PCT	£13,354	£1,933	279,831	£6.91
City and Hackney Teaching PCT	£10,523	£1,523	220,479	£6.91
Richmond and Twickenham PCT	£8,385	£1,214	172,967	£7.02
Redbridge PCT	£11,764	£1,703	239,977	£7.10
South West Essex PCT	£19,575	£2,833	397,364	£7.13
Hammersmith and Fulham PCT	£8,409	£1,217	169,996	£7.16
Westminster PCT	£12,072	£1,747	234,500	£7.45
Wandsworth PCT	£14,873	£2,153	280,145	£7.68
Kensington and Chelsea PCT	£10,187	£1,474	190,514	£7.74
Bradford and Airedale PCT	£26,670	£3,860	497,635	£7.76
South East Essex PCT	£17,948	£2,598	333,348	£7.79
Solihull Care Trust	£11,131	£1,611	206,552	£7.80
Mid Essex PCT	£19,364	£2,803	356,281	£7.87
Leicester City PCT	£17,147	£2,482	308,699	£8.04
Bedfordshire PCT	£23,096	£3,343	411,716	£8.12
West Hertfordshire PCT	£30,332	£4,390	536,390	£8.18
Kirklees PCT	£22,372	£3,238	391,969	£8.26
Wakefield District PCT	£19,045	£2,757	333,186	£8.27
Berkshire East PCT	£22,056	£3,192	384,225	£8.31
Blackpool PCT	£8,173	£1,183	140,104	£8.44
Telford and Wrekin PCT	£9,516	£1,377	160,910	£8.56
Islington PCT	£11,079	£1,604	187,275	£8.56
Calderdale PCT	£11,877	£1,719	200,421	£8.58
Suffolk PCT	£34,858	£5,045	587,972	£8.58
Leeds PCT	£45,813	£6,631	767,081	£8.64
Croydon PCT	£20,313	£2,940	335,142	£8.77
Portsmouth City Teaching PCT	£12,231	£1,770	199,522	£8.87
East and North Hertfordshire PCT	£34,163	£4,945	549,793	£8.99
Buckinghamshire PCT	£30,897	£4,472	496,622	£9.00
Kingston PCT	£10,842	£1,569	172,013	£9.12
Southwark PCT	£16,413	£2,376	258,245	£9.20
Medway PCT	£16,975	£2,457	265,207	£9.26
Cambridgeshire PCT	£36,949	£5,348	577,074	£9.27
Havering PCT	£15,276	£2,211	237,212	£9.32
East Riding Of Yorkshire PCT	£19,703	£2,852	304,296	£9.37
Doncaster PCT	£19,016	£2,752	293,143	£9.39
Hull PCT	£18,187	£2,632	280,044	£9.40
West Kent PCT	£43,203	£6,253	662,250	£9.44
Manchester PCT	£32,085	£4,644	485,511	£9.57
North Tyneside PCT	£13,504	£1,955	204,085	£9.58
North Lincolnshire PCT	£10,542	£1,526	158,259	£9.64
Liverpool PCT	£29,696	£4,298	443,988	£9.68
Greenwich Teaching PCT	£15,423	£2,232	230,462	£9.69
Lambeth PCT	£19,502	£2,823	289,747	£9.74
Enfield PCT	£18,076	£2,616	267,869	£9.77
Darlington PCT	£6,631	£960	98,203	£9.77
County Durham PCT	£34,556	£5,002	509,491	£9.82
Sheffield PCT	£36,525	£5,287	534,251	£9.90
Hampshire PCT	£85,266	£12,341	1,235,910	£9.99
Berkshire West PCT	£31,766	£4,598	455,101	£10.10
Derbyshire County PCT	£48,630	£7,039	692,696	£10.16
Stoke On Trent PCT	£18,211	£2,636	258,117	£10.21
South Staffordshire PCT	£41,309	£5,979	583,057	£10.25
West Essex PCT	£18,563	£2,687	261,656	£10.27
Worcestershire PCT	£38,780	£5,613	545,377	£10.29
Harrow PCT	£14,239	£2,061	198,505	£10.38
Bristol PCT	£30,762	£4,452	428,124	£10.40
North East Lincolnshire Care Trust	£11,853	£1,716	163,551	£10.49
Sutton and Merton PCT	£27,511	£3,982	377,654	£10.54
North Yorkshire and York PCT	£55,919	£8,094	767,344	£10.55
Rotherham PCT	£17,781	£2,574	243,888	£10.55
South Birmingham PCT	£25,331	£3,666	347,014	£10.57
Torbay Care Trust	£10,211	£1,478	139,121	£10.62
North East Essex PCT	£23,355	£3,380	317,972	£10.63
Great Yarmouth and Waveney PCT	£16,281	£2,357	220,674	£10.68
Lewisham PCT	£18,996	£2,749	257,419	£10.68
Haringey Teaching PCT	£17,792	£2,575	240,403	£10.71
Bromley PCT	£22,622	£3,274	303,504	£10.79
Cornwall and Isles Of Scilly PCT	£39,395	£5,702	525,942	£10.84
Tower Hamlets PCT	£16,073	£2,326	214,523	£10.84
Northamptonshire PCT	£50,287	£7,279	660,508	£11.02
Bournemouth and Poole PCT	£24,842	£3,596	321,235	£11.19
Bury PCT	£14,086	£2,039	182,116	£11.20
Wiltshire PCT	£33,732	£4,882	434,921	£11.23
Nottingham City PCT	£23,709	£3,432	305,234	£11.24
Brighton and Hove City PCT	£20,263	£2,933	259,100	£11.32
Barnet PCT	£26,126	£3,781	331,471	£11.41
East Lancashire PCT	£29,537	£4,275	373,519	£11.45
Isle of Wight NHS PCT	£10,947	£1,584	137,985	£11.48
Herefordshire PCT	£13,871	£2,008	174,778	£11.49
Peterborough PCT	£11,884	£1,720	149,603	£11.50
South Gloucestershire PCT	£19,257	£2,787	242,175	£11.51
West Sussex PCT	£61,650	£8,923	773,856	£11.53
Sandwell PCT	£24,054	£3,482	301,397	£11.55
Bassetlaw PCT	£8,517	£1,233	106,594	£11.56
North Staffordshire PCT	£16,342	£2,365	204,101	£11.59
Warwickshire PCT	£41,377	£5,989	516,157	£11.60
Leicestershire County and Rutland PCT	£51,892	£7,511	645,279	£11.64
Coventry Teaching PCT	£25,972	£3,759	322,771	£11.65
Walsall Teaching PCT	£20,099	£2,909	249,756	£11.65
Northumberland Care Trust	£25,165	£3,642	311,274	£11.70
Birmingham East and North PCT	£32,196	£4,660	398,186	£11.70
Heywood, Middleton and Rochdale PCT	£16,539	£2,394	203,963	£11.74
Gloucestershire PCT	£47,058	£6,811	579,098	£11.76
Warrington PCT	£15,740	£2,278	192,778	£11.82
Waltham Forest PCT	£18,725	£2,710	228,251	£11.87
Oxfordshire PCT	£50,412	£7,297	612,823	£11.91
Dudley PCT	£24,837	£3,595	301,297	£11.93
Lincolnshire PCT	£58,350	£8,446	698,635	£12.09
Halton and St Helens PCT	£25,512	£3,693	304,194	£12.14
Surrey PCT	£90,124	£13,045	1,072,388	£12.16
Swindon PCT	£16,195	£2,344	192,541	£12.17
Shropshire County PCT	£24,050	£3,481	285,158	£12.21
Norfolk PCT	£61,094	£8,843	723,638	£12.22
Hillingdon PCT	£20,365	£2,948	240,291	£12.27
Dorset PCT	£32,906	£4,763	382,266	£12.46
Wolverhampton City PCT	£20,463	£2,962	237,535	£12.47
South Tyneside PCT	£13,037	£1,887	150,957	£12.50
Trafford PCT	£18,223	£2,638	210,704	£12.52
Central and Eastern Cheshire PCT	£38,943	£5,637	445,787	£12.64
Tameside and Glossop PCT	£19,835	£2,871	225,259	£12.74
North Tees PCT	£16,689	£2,416	188,522	£12.81
Middlesbrough PCT	£12,781	£1,850	144,105	£12.84
Bolton PCT	£23,404	£3,387	262,529	£12.90
Blackburn with Darwen PCT	£13,512	£1,956	151,187	£12.94
Heart of Birmingham Teaching PCT	£25,502	£3,691	282,156	£13.08
Stockport PCT	£25,502	£3,691	281,488	£13.11
Devon PCT	£66,378	£9,608	732,201	£13.12
Newcastle PCT	£23,711	£3,432	260,861	£13.16
Derby City PCT	£24,729	£3,579	271,023	£13.21
Newham PCT	£23,604	£3,416	254,504	£13.42
Sefton PCT	£25,640	£3,711	270,639	£13.71
Hartlepool PCT	£8,662	£1,254	91,132	£13.76
Eastern and Coastal Kent PCT	£68,302	£9,886	715,899	£13.81
Sunderland Teaching PCT	£26,183	£3,790	273,990	£13.83
Cumbria PCT	£48,141	£6,968	502,103	£13.88
North Somerset PCT	£19,373	£2,804	201,811	£13.89
Knowsley PCT	£14,653	£2,121	150,286	£14.11
North Lancashire PCT	£31,912	£4,619	326,341	£14.15
Nottinghamshire County PCT	£62,796	£9,089	638,935	£14.23
Western Cheshire PCT	£24,205	£3,503	245,689	£14.26
Central Lancashire PCT	£43,959	£6,363	438,711	£14.50
East Sussex Downs and Weald PCT	£32,783	£4,745	326,732	£14.52
Milton Keynes PCT	£23,346	£3,379	232,448	£14.54
Redcar and Cleveland PCT	£13,359	£1,934	132,813	£14.56
Salford PCT	£22,473	£3,253	222,861	£14.60
Hastings and Rother PCT	£18,137	£2,625	171,398	£15.32
Oldham PCT	£23,714	£3,432	222,362	£15.44
Barnsley PCT	£24,698	£3,575	231,551	£15.44
Bath and North East Somerset PCT	£19,883	£2,878	186,018	£15.47
Plymouth Teaching PCT	£26,830	£3,883	250,297	£15.52
Ashton, Leigh and Wigan PCT	£32,870	£4,758	301,596	£15.77
Somerset PCT	£56,685	£8,205	513,108	£15.99
Wirral PCT	£34,407	£4,980	309,821	£16.07
Southampton City PCT	£27,679	£4,006	245,611	£16.31
Gateshead PCT	£23,570	£3,412	194,043	£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.

 

For further information about NRAS, please contact:

 

National Rheumatoid Arthritis Society

Unit B1 Westacott Business Centre,

Westacott Way,

Littlewick Green,

Maidenhead

Berkshire SL6 3RT

 

Phone: [phone]

Email: [e-mail]

www.rheumatoid.org.uk

 

 

 

---

[1] 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

[2] National Institute for Health and Clinical Excellence, Rheumatoid arthritis: The management of rheumatoid arthritis in adults, February 2009

[3] National Audit Office, Services for people with rheumatoid arthritis, July 2009, page 25

[4] Ibid page 5

[5] Ibid page 15

[6] Department of Health, Supporting people with long-term conditions, January 2005

[7] National Audit Office, Services for people with rheumatoid arthritis, July 2009, page 9

[8] Ibid page 9

[9] Ibid page 9

[10] Ibid page 9

[11] Department of Health, Programme budgeting data 2007-08, 16 July 2009

[12] Ibid page 4

[13] National Audit Office, Services for people with rheumatoid arthritis , July 2009 page 4

[14] Ibid page 10

[15] Ibid page 26

[16] Ibid page 34

[17] Health Mandate, National priorities, local action, July 2009

[18] Ibid page 5

[19] Ibid page 32

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

[21] National Audit Office, Services for people with rheumatoid arthritis , July 2009, page 10

[22] Department of Health, Programme budgeting data, 16 July 2009; available here: http://www.dh.gov.uk/en/Managingyourorganisation/Financeandplanning/Programmebudgeting/DH_075743?IdcService=GET_FILE&dID=200999&Rendition=Web

[23] National Audit Office, Services for people with rheumatoid arthritis , July 2009, page 15

[24] NHS Information Centre, Attribution dataset GP registered populations 2008, 30 January 2009