National Audit of Services for
People with Multiple Sclerosis 2008
NATIONAL REPORT
June 2008
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Copyright
All rights reserved. No par...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Commissioning organisations
The Royal Co...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
CONTENTS
Acknowledgements ...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
LIST OF TABLES
SURVEY OF PEOPLE WITH M...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Table 35: Plans to improve services in ...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
GLOSSARY
MS Multiple sc...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
PREFACE
People with multiple sclerosis f...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
EXECUTIVE SUMMARY
“Some 10 million peopl...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
The major deficit in care provision is t...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
INTRODUCTION
Neurological disease is an ...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
“The main finding of this audit is...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Method
The audit was carried out by the t...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Collecting data from relevant organisatio...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Organisations: data collection
Questionna...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
and MS Therapy Centres were also notified...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
questions, the data from England are pres...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
RESULTS - SURVEY OF PEOPLE WITH MULTIPLE ...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Geographical coverage
Table 1: Geograp...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Wales
The median time since diagnosis was...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
General experience of services for probl...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Overall satisfaction with standard of ser...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Key recommendation one: specialised servi...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Key recommendation two: rapid diagnosis
...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Table 9: Referral to specialist service
...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
59% percent of people felt that ...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Key recommendation five: sensitive but t...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Table 15: Self-referral
If you need to, ...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
The five top problems rated as ...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Pain
Table 20: Pain
ENGLAND (N=1200 RESP...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Table 22: Most major concern – NHS succe...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
RESULTS – ORGANISATIONAL AUDIT OF NHS ORG...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
minor extent, the likely validity of info...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Table 26: Clinical time devoted to multi...
National Audit of Services for People with Multiple Sclerosis 2008: Full report
Table 27: Formal needs assessment
...
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  • 1. National Audit of Services for People with Multiple Sclerosis 2008 NATIONAL REPORT June 2008
  • 2. National Audit of Services for People with Multiple Sclerosis 2008: Full report Copyright All rights reserved. No part of this publication may be reproduced in any form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner. Applications for the copyright owner’s written permission to reproduce any part of this publication should be addressed to the publisher. Copyright © 2008 Royal College of Physicians ISBN 978-1-86016-338-8 2
  • 3. National Audit of Services for People with Multiple Sclerosis 2008: Full report Commissioning organisations The Royal College of Physicians, London and the Multiple Sclerosis Trust, Letchworth Report produced by Derick Wade Clinical Lead/Director Katharine Young Project Manager Derek Lowe Statistician Approved by: The Multiple Sclerosis Audit Steering Group Date: 28 May 2008 Audit correspondence ms@rcplondon.ac.uk Acknowledgements We acknowledge the time and effort given by all of the people who completed the survey for people with multiple sclerosis and for the NHS staff who undertook the organisational audit. We would also like to thank: members of the Steering Group including Bernie Porter, Christine Singleton, Graham Venables and the Royal London Hospital for their input into the audit process the following for their help in the pilot stage: Dr Ian Redmond; Dr Ljuba Stirzaker; Dr Maggie Barker; Jacky Gruhn; Julia Hookway; Dr John H Coakley; Elizabeth Lowe; Lisa Cummins; Chris Walker; Jean Schofield Professor Carolyn Young and her colleagues at the Walton Centre for their support, and especially for facilitating separate presentation of their data all those who supported us through giving advice, ideas and other support. 3
  • 4. National Audit of Services for People with Multiple Sclerosis 2008: Full report CONTENTS Acknowledgements 3 LIST OF TABLES 5 GLOSSARY 7 PREFACE 8 Executive summary 9 Introduction 11 Method 13 RESULTS - SURVEY OF PEOPLE WITH MULTIPLE SCLEROSIS 18 Background about respondents 18 General experience of services for problems related to MS 21 Key recommendation one: specialised services 23 Key recommendation two: rapid diagnosis 24 Key recommendation three: seamless services 25 Key recommendation four: involvement in clinical decisions 26 Key recommendation five: sensitive but thorough assessment 27 Key recommendation six: self referral 27 Sentinel marker: skin pressure ulcers 28 Optional information 28 RESULTS – ORGANISATIONAL AUDIT OF NHS ORGANISATIONS 32 Acute Trust services 36 Key recommendation one: specialised services 39 Key recommendation two: rapid diagnosis 45 Key recommendation three: seamless services 47 Key recommendation four: a responsive service 51 Key recommendation five: sensitive but thorough problem assessment 54 Key recommendation six: self-referral after discharge 57 Sentinel marker: pressure ulcers 60 DISCUSSION 63 Main conclusions and recommendations 71 Appendix 1: NICE guideline key recommendations and sentinel marker 74 Appendix 2: MS audit Steering Group 78 Appendix 3: Participating organisations 79 4
  • 5. National Audit of Services for People with Multiple Sclerosis 2008: Full report LIST OF TABLES SURVEY OF PEOPLE WITH MULTIPLE SCLEROSIS Table 1: Geographical Coverage 19 Table 2: Duration with MS since diagnosis 20 Table 3: Specialist Services 21 Table 4: Overall satisfaction with services 22 Table 5: Dissatisfaction 22 Table 6: How your MS affects you 22 Table 7: Specialist neurology service 23 Table 8: Specialist neurological rehabilitation service 23 Table 9: Referral to specialist service 25 Table 10: Time to diagnosis 25 Table 11: Information about MS 25 Table 12: Information regarding transfer 26 Table 13: Involvement in decisions 26 Table 14: Sensitive but thorough assessment 27 Table 15: Self-referral 28 Table 16: Skin pressure ulcers 28 Table 17: Fatigue 29 Table 18: Mobility 29 Table 19: Bladder 29 Table 20: Pain 30 Table 21: Most major concern 30 Table 22: Most major concern – NHS success 31 ORGANISATIONAL AUDIT OF NHS ORGANISATIONS Table 23: Participating sites 32 Table 24: Cross-tabulations MS & NSF responsibilities in Trusts 33 Table 25: Managerial responsibilities within Trusts 33 Table 26: Clinical time devoted to multiple sclerosis 34 Table 27: Formal needs assessment 35 Table 28: Plans to use formal needs assessment next year 35 Table 29: Patient involvement 36 Table 30: Specialist services available/provided 37 Table 31: Specialist beds and clinics 37 Table 32: Specialised clinical time devoted to multiple sclerosis 38 Table 33: Commissioning & provision 40 Table 34: Adequacy of service 40 5
  • 6. National Audit of Services for People with Multiple Sclerosis 2008: Full report Table 35: Plans to improve services in the next year 41 Table 36: Monitoring the performance of providers (PCT / LHB only) 41 Table 37: Commissioning and provision of neurological rehabilitation services 42 Table 38: Adequacy of service 43 Table 39: Plans to improve services in the next year 44 Table 40: Monitoring the performance of providers (PCT / LHB only) 44 Table 41: Rapid access 45 Table 42: Plans for increasing rapid access in next year 46 Table 43: Team guidance for rapid referral 46 Table 44: Co-ordinated care pathways across organisational boundaries 48 Table 45: Development of care pathways over the next year 49 Table 46: Specialist services needed by people with MS 52 Table 47: Adequacy of services needed by people with MS 52 Table 48: Plans to improve range / availability of services, if deficient 53 Table 49: Patient involvement in clinical decisions 53 Table 50: Formal mechanisms to involve people with MS in planned service developments 54 Table 51: Use of structured assessment protocols 55 Table 52: Performance of structured assessment protocols 56 Table 53: Plans to increase use of structured assessments in next year 57 Table 54: Documented plans for self-referral – Providers 58 Table 55: Documented plans for self-referral – Commissioners 58 Table 56: Self-referral back to specialist services 59 Table 57: Monitoring performance in responding to patient referral 59 Table 58: Plans to allow self-referral in next year 60 Table 59: Incidence of skin pressure ulceration 61 Table 60: Response to changes in incidence of skin pressure ulcers 61 Table 61: Plans to monitor and reduce incidence of skin pressure ulcers 62 6
  • 7. National Audit of Services for People with Multiple Sclerosis 2008: Full report GLOSSARY MS Multiple sclerosis NSF LTC National Service Framework for Long-term Conditions PCT Primary Care Trust RO Regional Office SHA Strategic Health Authority Trust Acute care Trusts (hospitals) LHB Local Health Boards DoH Department of Health 7
  • 8. National Audit of Services for People with Multiple Sclerosis 2008: Full report PREFACE People with multiple sclerosis face many challenges – often a prolonged period of symptoms but no diagnosis, an uncertain prognosis which can encompass anything from a relatively normal life to severe disability for years, loss of social roles such as work and parenting, loss of independence, and many unpleasant symptoms. The NHS should help people face and minimise these challenges; unfortunately it is not always successful at this. The National Institute for Health and Clinical and Excellence (NICE) recognised the need for improved NHS services and produced national guidance on the management of multiple sclerosis in 2003. The six key recommendations and one sentinel marker of service quality could also be used as seven standards that the NHS should achieve. An initial audit by the Royal College of Physicians and the MS Trust in 2005/6 showed that standards were rarely met in full and there was a high level of dissatisfaction amongst people with multiple sclerosis. The two organisations joined forces again in 2007/08 to repeat the exercise on a national scale (England and Wales). Here we present the results of the first full national audit that measures the quality of NHS services for people with multiple sclerosis against the seven standards derived from the NICE national clinical guideline. The results and subsequent recommendations are relevant to all NHS organisations – hospitals and other service providers, commissioners, and those who are responsible for monitoring the quality and adequacy of services to the whole population. The results should help to improve their performance in delivering high quality services to people with multiple sclerosis. Moreover they should also be relevant to the implementation of the National Service Framework for Long-Term Neurological Conditions across the UK. People with multiple sclerosis, and people with other longterm neurological conditions should also find the report helpful. It provides data to support local initiatives for service development. We believe it is imperative that the NICE national clinical guideline is fully implemented, to improve the health of people with multiple sclerosis and to ensure that they have equal access to healthcare. We hope that this audit will assist all those who commission or provide care for people with multiple sclerosis, identifying where improvements in services and/or commissioning are required. This will require significant national investment in neurological rehabilitation services, and a great increase in the attention paid to the monitoring and prevention of skin pressure ulcers. Derick Wade Katharine Young Chris Jones Clinical Lead, MS Audit Project Manager, MS Audit Chief Executive, MS Trust Jonathan Potter Graham Venables Clinical Director, President, Association of Clinical Effectiveness & British Neurologists Evaluation Unit, RCP 8
  • 9. National Audit of Services for People with Multiple Sclerosis 2008: Full report EXECUTIVE SUMMARY “Some 10 million people in the UK are living with a neurological condition which has a significant impact on their lives, and they make up 19% of hospital admissions.” (Neurological Alliance, 2003). This document reports upon an audit of NHS services for people with multiple sclerosis (MS), and identifies four areas in which the NHS can take action to improve the standard of care. People with MS have a wide variety of clinical problems and a varied and unpredictable disease course, which makes an audit of these services a useful marker of service quality for many other neurological conditions. Moreover, with an estimated mean direct medical cost of £6,810 per person per year, MS is an expensive condition, with much of that expense being avoidable with good management1. A grade 4 pressure ulcer, for example, which is always avoidable, costs the NHS an estimated £10,551, with total costs in the UK estimated as being £1.4–£2.1 billion - or around 4% of the total NHS expenditure2. Background In November 2003 NICE made six key recommendations concerning the management of people with MS, and identified one sentinel marker for service quality. In 2005/6 an initial audit identified major failures in NHS services. In 2007/8 a full national (England and Wales) audit was undertaken collaboratively by the Royal College of Physicians (RCP) and the MS Trust. A multi-professional working party oversaw the audit which used the key recommendations and sentinel marker identified in the NICE guideline as seven standards by which to measure the quality of services offered. Methodology Data were collected from four sources: 1300 people with MS (as service users); 127/157 NHS Trusts (as service providers); 140/172 service commissioning organisations, and 7/13 organisations responsible for performance management. The available data suggest that the sample was representative of its population. Results Key Results Access to neurological rehabilitation is unacceptably low, with very limited commissioning and only slightly less limited actual provision Access to specialist neurological services is generally good Time between initial referral and final diagnosis remains long Patient involvement both in the planning of individual personal care and in service provision and development is very poor Assessments are perceived by people with MS generally to be carried out in a sensitive and thorough manner Integration of care between health and social services is felt to be poor 1 G Kobelt, J Berg, P Lindgren, N Russell, R Nixon Costs and quality of life of multiple sclerosis in the United Kingdom 2006 in European Journal of Health Economics S96-S104 2 National Institute for Health and Clinical Evidence Pressure ulcer management - cost analysis of the new recommendations in the prevention and treatment of pressure ulcers quick reference guide Implementing NICE Clinical Guideline no. 29 London:NICE;September 2005; Bennett G, Dealey C, Posnett J The cost of pressure ulcers in the UK Age & Ageing 2004;33(3):230-235; Allman RM, Goode PS, Burst N, Bartolucci AA, Thomas DR. Pressure ulcers, hospital complications, and disease severity: impact on hospital costs and length of stay Adv Wound Care. 1999;12(1):22-30 9
  • 10. National Audit of Services for People with Multiple Sclerosis 2008: Full report The major deficit in care provision is the access to specialist neurological rehabilitation. This is particularly important for people with a chronic disabling condition which is characterised by periods of relapse and by a wide range of neurological losses (e.g. weakness, loss of sensation, bladder function, fatigue). Some service improvements have been made since the NICE guideline was published. However the level of commissioning and monitoring of services for people with MS is low; improvement probably resulted from the commitment of local clinical champions. The audit identified the lack of any „ownership‟ for ensuring that the NHS as a whole provides adequate services across the whole range of services necessary to meet the needs of people with MS. Though informal networks and local clinical arrangements clearly exist, and work well in places, there is no identified person, role or organisation with responsibility for ensuring adequacy of services. The audit also highlights ambiguity both about the nature of and the responsibility for „specialist services‟, and about long-term conditions; the emphasis should be on long-term neurological conditions. The main recommendations that follow from this audit are: All NHS should have one specific person or role responsible for services Organisations for people with long-term neurological conditions including multiple sclerosis (MS) should involve people with MS in setting standards, in service development and in commissioning should have one specific person or role responsible for monitoring and reducing the rate of skin pressure ulceration Commissioning should commission specialist neurological rehabilitation services Organisations to enable every person with MS to have ready and rapid access to these services Acute Trusts/ should ensure that any person with MS in their care for Provider Units whatever reason has timely access to an expert neurology service and an expert neurological rehabilitation service should ensure that health professionals engage people with multiple sclerosis fully in all clinical decisions should give people with multiple sclerosis information about relevant local non-statutory services as well as national services Department of should review the organisational framework of the NHS so that Health one organisation becomes responsible for ensuring that the population of people with MS in a defined area has access to services that can meet all of their clinical needs in a timely way, across the whole range of problems they face, managed in a coordinated way, and with staff who have appropriate expertise 10
  • 11. National Audit of Services for People with Multiple Sclerosis 2008: Full report INTRODUCTION Neurological disease is an important cause of significant disability in people aged under 65 years, but data on the management by health services of people with long-term neurological conditions are largely absent. The resource implications of neurological disability are not accurately known, but are considerable both directly (i.e. money paid to provide care) and indirectly (i.e. loss of productive activity). There are no data to indicate whether the health resources used by people with neurological disability are either effective or efficiently distributed. Indeed it is not clear whether the total resource available is even sufficient for the needs. In this situation it is important to gather data. Current NHS information systems are incapable of collecting data in relation to disability (as opposed to disease) and are incapable of collecting data across groups of disease (such as neurological disease). One way to investigate the management of people with long-term neurological conditions by the Health Service is to focus on a specific disease or disorder that may indicate the overall standard of care. Multiple sclerosis is a useful marker condition for investigating the management of other disabling neurological disorders. It is relatively common (1 in 700 of the population), and it manifests in a wide variety of ways covering most of the situations faced by people with other neurological diseases. Furthermore several national documents have made recommendations about services for people with multiple sclerosis, most notably the National Clinical Guideline on the Management of Multiple Sclerosis in Primary and Secondary Care published by the National Institute for Health and Clinical Excellence (NICE) in November 2003 and the National Service Framework for Long-Term Conditions (NSF LTC) [2005]. Between October 2005 and March 2006 the Royal College of Physicians and the MS Trust undertook an initial audit of the provision of services for people with multiple sclerosis, judging the service against seven standards derived from the six key recommendations and one sentinel marker proposed within the NICE guideline: The provision of specialised services Rapid initial diagnosis Provision of seamless services across all boundaries Involvement in clinical decisions Sensitive but thorough assessment Self-referral Registration and investigation of each new skin pressure ulcer The 2005/6 audit investigated services within six of the 28 Strategic Health Authority areas then existing in England (North West London; Greater Manchester; Dorset/Somerset; Kent; Birmingham and County Durham). Wales, Scotland and Northern Ireland were not included. The conclusions of the 2005/6 audit were published in July 2006 and were summarised as follows: 11
  • 12. National Audit of Services for People with Multiple Sclerosis 2008: Full report “The main finding of this audit is that the standards set by the seven key recommendations made in the NICE National Guideline for the Management of Multiple Sclerosis are not being met in that: Service providers are not using them to guide service delivery; Service commissioners are not using them either to commission services or to monitor service delivery; Service performance managers are not using them to monitor that the health care needs of their population are being met. A few organisations adhere partially to one or two, but most do not adhere to any. Furthermore, most organisations are not specifically planning to implement any of the recommendations.” The results of this first audit undertaken in 2005/6 were published3 and were notified to all strategic health authorities, primary care trusts and acute hospital trusts (not simply those that took part). Following the 2005/6 report, a full national audit in England and Wales was undertaken in 2008 to assess the implementation of the NICE guideline and the NSF for Long Term Conditions, and this document reports upon it. This audit retained the focus on multiple sclerosis both as an important single disease causing long-term disability, and as a marker condition indicative of the more general standard of services for people with long-term neurological disorders. Aim and objectives of the audit The overall aim was to improve services for people affected by multiple sclerosis The objectives were: 1 To quantify the differences between recommendations made in the NICE National Clinical Guidelines and actual service provision and to identify variations across England and Wales, through comparing data obtained from: i) people responsible for governance of health service provision (SHAs and ROs) ii) health care commissioners (PCTs/LHBs) iii) service providers (Acute Trusts) iv) people with MS needing and using services 2 To measure progress in the implementation of the National Clinical Guideline for Multiple Sclerosis. 3 To compare performance against relevant parts of the National Service Framework for Long Term Conditions where possible. 4 To develop further strategies to facilitate improvement of service delivery to people with multiple sclerosis in England & Wales. 5 To increase awareness in the organisational level of the NHS of the NICE National Clinical Guideline for MS. 3 Wade, Derick NHS services for people with multiple sclerosis: a national survey. An audit of commissioning, provision, and experience of services used by people with multiple sclerosis in 2005–6, against recommendations from Nice Clinical Guideline 8 2006: Royal College of Physicians and the Multiple Sclerosis Trust 12
  • 13. National Audit of Services for People with Multiple Sclerosis 2008: Full report Method The audit was carried out by the the Clinical Evaluation and Effectiveness Unit of the Royal College of Physicians (London) in collaboration with the MS Trust. It covered England and Wales, and collected data concerning service provision from four different points of view to ensure that a comprehensive set of information was generated. Methodological changes from 2005/6 audit There are three major alterations from the 2005/6 audit. First, on this occasion we audited services in the whole of England and Wales and not just from selected strategic health authority areas. Second, to collect data we used a web-based system rather than a paper-based system. The only exception was that people with multiple sclerosis could use paper if they wished; the data were then entered by volunteers. Third we adapted and changed the questions in the light of our experience. Many people made very helpful comments when completing the first audit questionnaire, and our data also made it clear that some questions were not useful or needed major change. General outline The audit used a 360 approach, collecting data from all four parties involved in the services: People with multiple sclerosis - service users Acute NHS hospital Trusts - service providers Primary care trusts (PCTs) and Local Health Boards (LHBs) - service commissioners Strategic Health Authorities (SHAs) and Regional Offices (ROs) - service performance managers The audit collected data from service providers, service commissioners and organisations responsible for monitoring service provision that referred to the situation in January and February 2008 and their plans for the next 12 months. For people with multiple sclerosis the data related to experiences over the preceding 12 months (i.e. 2007). The organisational data were collected from senior people within the various organisations. No direct or prospective data were collected; the data concerned service organisation and delivery rather than actual clinical practice with individual patients. The population and services studied Data were collected concerning NHS services delivered to the whole population of England and Wales. Scotland and Northern Ireland were not included as their health service arrangements are different, and because the NICE recommendations only applied to England and Wales. The audit did not include Social Services because NICE recommendations are specific to health organisations. In all cases the data concerned delivery of NHS health services to people with multiple sclerosis. Specifically the audit was not restricted to services designated as multiple sclerosis services. This was because people with multiple sclerosis frequently (and appropriately) use a wide variety of services such as urological services, pain services and general medical services to manage problems that nonetheless arise from their multiple sclerosis. Moreover the NICE recommendations applied to all services, and did not specifically refer to designated multiple sclerosis services. 13
  • 14. National Audit of Services for People with Multiple Sclerosis 2008: Full report Collecting data from relevant organisations Data on the monitoring of service commissioning (performance management) were collected from SHAs in England and ROs in Wales. Data on service commissioning were collected from PCTs in England, and LHBs in Wales. In Wales the Health Commission Wales commissions designated specialist services and it stated that it considered multiple sclerosis services to fall within its remit; LHBs commission general services. Consequently Health Commission Wales was also approached for data on service commissioning (but they did not provide any information). Data of service provision were collected from Acute Trusts (i.e. hospitals) because it was assumed that the great majority of health service provision to people with multiple sclerosis for problems associated with their multiple sclerosis would be delivered by acute sector trusts and hospitals. Non-neurological specialist trusts, mental health trusts, ambulance trusts and learning disability trusts were not approached. Within an organisation it was not easy to know who would both know the answers and have the time to respond. Therefore we approached a variety of people within each organisation (different organisations used different titles): Chief Executive Medical Director Lead for long-term conditions Managers for clinical governance, effectiveness or audit Public health directors Head of commissioning In addition neurologists, MS specialist nurses and others were asked if they could identify and, if possible, contact named individuals working in their local organisations who might be able to help. Standards Standards were derived from the National Clinical Guideline for Multiple Sclerosis4. The audit was focused on the six key recommendations and one sentinel marker. These are shown in detail in Appendix 1. In summary the seven aspects audited were the commissioning and provision of: specialised services (neurological and neurological rehabilitation) a rapid initial diagnosis of the disease seamless services responsive services (i.e. patient-centred, responding to individual circumstances) sensitive but thorough assessments self-referral back to specialised services monitoring of frequency and management of skin pressure ulcers (sentinel marker) 4 National Collaborating Centre for Chronic Conditions. Multiple Sclerosis: National clinical guideline for diagnosis and management in primary and secondary care (NICE Clinical Guideline 8) London: Royal College of Physicians, 2003 (www.rcplondon.ac.uk/pubs/books/MS/index.asp) 14
  • 15. National Audit of Services for People with Multiple Sclerosis 2008: Full report Organisations: data collection Questionnaires were developed to collect audit data related to the standards derived from the recommendations made by NICE. The questions collected data that measured the extent to which an organisation used the recommendations (see appendix 1) when considering services that were or should be used by people with MS. In addition, for each organisation, some initial contextual information was gathered. This concerned who took responsibility for the questionnaire and the perceived involvement of the organisation within overall services for people with MS. Hospitals in particular are often part of a network, with some services being provided directly, some being provided by visiting staff, and some services being provided in other organisations. The questions developed and the answer options were identical for each organisation as far as this was practical, so that direct comparisons could be made. The answer options were hierarchical, with one extreme indicating specific use of the NICE guideline recommendation and the other indicating that nothing was done. In between we specifically included an option on using the National Service Framework for Long-Term Conditions (NSF LTC) because many organisations had used this to guide their work in 2005. Thus the audit asked for the greatest level of specificity employed when performance managing, commissioning or providing services. The following options were available: specifically for people with MS in line with the National Service Framework for Long Term Conditions for neurology as a whole at a broader level (i.e. within General Medical Services)* no not known *The qualifier for the broader level option – “i.e. within General Medical services” - was offered to acute trusts only. The questionnaires and other aspects of the audit (e.g. web-based data entry system) were piloted by various people (see acknowledgements), modified in the light of feedback and then used. The questionnaire was placed on the MS Audit website. For each question, the respondent could add additional explanatory information (or make any other comments). The person or people within an organisation were given the URL link to the system and a unique username and password, and could enter data at any time during the data collection period. Organisations completed data entry between 4th February 2008 and 31st March 2008. The final questionnaires used are available on the audit website: http://msaudit.rcplondon.ac.uk/. People with MS: sample selection and data collection People with MS from England and Wales were recruited in several ways. The intention was to ensure a sample that covered the whole geographic area, people diagnosed within the last 12 months and the full range of disabilities seen. The sample was obtained via a variety of avenues. The audit was displayed prominently on the website of the MS Trust, and all supporters were notified via newsletter. MS Society branches 15
  • 16. National Audit of Services for People with Multiple Sclerosis 2008: Full report and MS Therapy Centres were also notified, and notices were posted on all websites, fora and discussion groups known to be used by people with MS, including Jooly‟s Joint and the MS Resource Centre. Invitation cards were also distributed via MS specialist neurologists, nurses and therapists. Letters were sent to the editors of regional and local newspapers advertising the audit. People with MS were asked to provide data in one of two ways. The preferred option was to complete a form electronically on the internet. The RCP website hosted the questionnaire. Anyone could register online. An alternative option was available. People could contact the MS Trust and ask for a paper form. Allowance was made for up to 500 paper forms to be completed, this limit being imposed because each form would need entry into the computer data-base. Paper forms were sent out and a stamped and addressed return envelope provided. In fact all requests for paper copies (about 200) were met without limit. The survey stressed that the respondent should fulfil the following criteria: Have multiple sclerosis. The person with multiple sclerosis could ask someone else to complete the form, provided the information came from and related to the person with MS. No check on diagnosis was made. Have used or wanted to use an NHS service (including primary care) over the preceding 12 months in relation to their MS. No independent check was made. Within the data collection process any person could make additional comments on the services they had received. The questions fell into three major groups: 1) The first group focused on the seven recommendations from the NICE guideline. It was obviously not possible or appropriate to match the organisational questions and answers. Instead the questions asked about the person‟s experience as set against each recommendation. 2) The second group were contextual, giving information about the person with MS. This enabled some estimate to be made about how representative the sample was. In addition it would enable some cross-validation of answers. 3) The third small group asked about satisfaction with NHS services. The first audit showed a marked discrepancy between stated satisfaction and qualitative comments which implied marked dissatisfaction. Consequently this audit included an additional question on dis-satisfaction because this seems to be a different construct (i.e. satisfaction and dissatisfaction are not simply opposite ends of the same spectrum). In addition each person was asked what they considered their most important problem was, and whether it had been satisfactorily handled by the NHS. The survey used is available on the audit website: http://msaudit.rcplondon.ac.uk/. Data handling All data were collected, directly or indirectly, using a custom-built web-based questionnaire straight into an initial data-base and they were then imported into SPSS version 15 and analysed. The primary analysis was descriptive. The data are presented in the order they were obtained by the questionnaires. For the organisations, the data for each question are set out for the three organisational levels (i.e. provider, commissioner, monitor) to allow direct comparison. Within each set of 16
  • 17. National Audit of Services for People with Multiple Sclerosis 2008: Full report questions, the data from England are presented first, followed by the data for Wales allowing the two countries to be compared. The data are presented separately for England and Wales for two reasons: 1) The NHS in Wales is a separate organisation, and has some different policies and priorities. 2) The evidence from the national stroke audit suggests that service quality might be appreciably different in Wales. As in the 2005/06 audit, there were a small number of organisations who registered and participated, but who stated that their role was undertaken by a neighbouring organisation on their behalf. In total 13 provider Trusts stated that 3 additional other Trusts provided their services for them. This was largely accounted for by one Neurological Centre, the Walton Centre in Liverpool. Twelve Trusts (three in Wales) stated that their services were provided by the Walton Centre. For the two single Trusts stating that two other Trusts provided their service, we populated the forms of the secondary Trusts with data provided by the primary Trust (i.e. the data were replicated). This allowed us to acknowledge that services were provided. However one particular Trust, the Walton Neurological Centre also accounted for twelve other Trusts. It seemed unreasonable to duplicate one set of data so many times and so we have presented data from the Walton Centre separately, with their consent. It should be noted that two of the 12 Trusts additionally completed questionnaires while stating that services were delivered by the Walton Centre. These data were not used. Presentation of results Data from people with multiple sclerosis are presented first so that the reader can set the organisational results in the context of reported experience. Organisational data has been presented question by question, contrasting data from those responsible for monitoring, service commissioning and service provision. Each part is preceded by the key points identified. In the key points the percentages given are specific to England. In the tables relating to each question we have also contrasted the replies from England with the replies from Wales. Categorical data are summarised as percentages with numerator and denominator shown. Numerical results are summarised by the median and inter-quartile range (IQR). Denominators will vary according to how much missing data there is. 17
  • 18. National Audit of Services for People with Multiple Sclerosis 2008: Full report RESULTS - SURVEY OF PEOPLE WITH MULTIPLE SCLEROSIS Key messages: The data analysed came from 1300 people with MS (1220 in England, 80 in Wales) Data represents 2.5% of the whole population of people with MS The web tool was accessed by 1631 persons. Of these 7 were excluded as they were not persons with MS. They did not progress beyond question 1.1. Also excluded from analysis were 260 persons with registration data only; 18 of these had made occasional comments against specific questions and another 13 made very sporadic answers to questions and commented. It may be that some of these persons entered their data and their data were not saved and only their comments were saved, or it may be that they chose only to answer and comment in relation to certain questions. In any event there was no indication from any of these persons that they had been in contact with the NHS about a problem related to their MS over the last 12 months. Of the remaining 1364 persons there were 38 who in response to question 1.1 said they had not been in contact with the NHS about a problem related to their MS over the last 12 months. The other 1326 persons said they had been in contact with the NHS during this time but of these there were 19 who then gave no further information to the survey. Six responses were from people living in Scotland and one person‟s area of residence was unknown. Approximately one-third of people with multiple sclerosis added freetext comments alongside their answers. Therefore the detailed results that follow are for 1300 persons with multiple sclerosis, 1220 living in England and 80 in Wales. Given a population in the two countries of 54 million and a prevalence of 1/1000, one can estimate an approximate 54,000 people with MS in the population, making the sample approximately 2.5% of the whole population of people with MS. Background about respondents Key messages: The geographical spread of the sample of people with MS was reasonable The median age was 51 years at the time of survey. The median age at diagnosis was 39 years, suggesting a sample diagnosed at a slightly older age of onset than usual. The median duration of disease was 9 years, less than might be expected Two thirds (73%) were women, as would be expected One hundred and twenty three people (9%) had been diagnosed within the last 12 months, a higher proportion than expected (4%) reflecting the emphasis on obtaining information about the process of diagnosis Most people felt that MS had a major (48%) or moderate (37%) effect on their life with only 1% saying there was no effect; this level of impact would be expected given the requirement that the person should have used the NHS within the last year 18
  • 19. National Audit of Services for People with Multiple Sclerosis 2008: Full report Geographical coverage Table 1: Geographical Coverage Proportion/number of national Audit sample population aged 15 and over % N % 000,s SHA (England): East of England 9.1 118 10.4 4601.8 East Midlands 5.4 70 8.2 3604.1 London 7.8 102 13.9 6152.3 North East 4.2 54 4.8 2120.6 North West 9.8 128 12.7 5626.9 South Central 11.7 152 7.4 3271.4 South East Coast 8.8 114 7.9 3494.3 South West 13.2 172 9.7 4268.5 West Midlands 11.2 146 9.9 4383.8 Yorkshire and the Humber 12.6 164 9.6 4232.7 Wales 6.2 80 5.5 2445 Total 100.0 1300 100 44201.5 * Mid 2006 estimates of resident population aged 15 and over* * (SHA) http://www.statistics.gov.uk/STATBASE/ssdataset.asp?vlnk=9739&More=Y *(Wales)http://www.statistics.gov.uk/statbase/ssdataset.asp?vlnk=9661&More=Y Age of responders The age of responders was calculated as number of years to 2008 from the year of birth, and was known for 1290 (1213 England, 77 Wales). England The median age was 51 years, interquartile range 43 to 59 years, 80th centile range 36 to 65 years, range 18 to 88. Wales The median age was 53 years, interquartile range 43 to 62 years, range 28 to 81. Age at diagnosis The age at diagnosis with MS was calculated from the year of birth and the year of diagnosis, and was known for 1284 (1208 England, 76 Wales). England The median age at diagnosis was 39 years, interquartile range 31 to 46 years, 80th centile range 26 to 53 years. Wales The median age at diagnosis was 41 years, interquartile range 21 to 49 years. Duration with MS since diagnosis Duration with MS since diagnosis was calculated as number of years to 2008 from year of diagnosis, and was known for 1293 (1214 England, 79 Wales). England The median time since diagnosis was 9 years, interquartile range 4 to 17 years, 80th centile range 2 to 26 years. 19
  • 20. National Audit of Services for People with Multiple Sclerosis 2008: Full report Wales The median time since diagnosis was 9 years, interquartile range 5 to 14 years. Females comprised 73% (891) and males 27% (326) of the English responders (unknown for 3). The breakdown for Wales was 76% (61) and 24% (19) respectively. Table 2: Duration with MS since diagnosis ENGLAND Female Male Age Median 50 54 Inter-quartile range 42-58 45-61 N of persons 885 326 Age at diagnosis Median 38 39 Inter-quartile range 30-46 33-47 N of persons 882 326 Years with MS Median 8 11 Inter-quartile range 4-17 6-18 N of persons 887 326 WALES Female Male Age Median 48 58 Inter-quartile range 43-59 53-64 N of persons 58 19 Age at diagnosis Median 39 50 Inter-quartile range 31-44 36-53 N of persons 57 19 Years with MS Median 9 9 Inter-quartile range 5-15 4-12 N of persons 60 19 20
  • 21. National Audit of Services for People with Multiple Sclerosis 2008: Full report General experience of services for problems related to MS Key messages: 78% of people with multiple sclerosis thought that specialist neurological services were available but only 41% thought that they had access to specialist neurological rehabilitation services Most people (82%) had access to specialist MS nurses and 58% to specialist MS physiotherapists When asked about satisfaction with NHS services, 10% were not at all satisfied and 23% were very satisfied; when asked about dissatisfaction, 7% were very dissatisfied and 40% were not at all dissatisfied Rates of satisfaction and dissatisfaction were similar in England and Wales When asked how the NHS had helped with their self-defined greatest problem, 10% thought that the NHS had done well but 16% were very unsatisfied, agreeing that the NHS “had not really tried” These questions aimed to obtain general information about the use of NHS services by people with MS in the sample; they are not related to the NICE guidance and simply help establish a context. They relate to the perception of the respondent. Table 3: Specialist Services As far as you know, are there specialist services for people with MS in your area: ENGLAND % Yes Yes No NK Specialist MS neurological services?* 78 954 77 189 Specialist neurological rehabilitation services?** 41 496 113 611 Specialist MS nursing? 82 1002 71 147 Specialist MS physiotherapy? 58 705 138 377 WALES % Yes Yes No NK Specialist MS neurological services?* 69 55 16 9 Specialist neurological rehabilitation services?** 29 23 15 42 Specialist MS nursing? 83 66 6 8 Specialist MS physiotherapy? 63 50 11 19 *specialist neurology service: services for diagnosis of MS and subsequent symptoms, and provision of specific drug treatments, especially disease modifying drugs **specialist neurological rehabilitation service: services providing an integrated rehabilitation programme through a multidisciplinary team when there are complex problems, aiming to help the person live independently 21
  • 22. National Audit of Services for People with Multiple Sclerosis 2008: Full report Overall satisfaction with standard of service received from the NHS Table 4: Overall satisfaction with services Over the last year, how satisfied were you in general with the standard of service received from the NHS (mark one)*: ENGLAND % Yes N Not at all satisfied 10 119 Somewhat satisfied; the NHS could do better 30 364 Moderately satisfied; the NHS did as well as I expected 37 452 Very satisfied; the NHS did better than I expected 23 277 WALES % Yes N Not at all satisfied 11 9 Somewhat satisfied; the NHS could do better 28 22 Moderately satisfied; the NHS did as well as I expected 39 31 Very satisfied; the NHS did better than I expected 22 17 * 9 persons did not give an answer Dissatisfaction Table 5: Dissatisfaction Next, considering all your experiences over the last 12 months, how dissatisfied were you with the services received from the NHS? ENGLAND % Yes N Not at all dissatisfied; no complaints 40 481 A little dissatisfied; there were some things that could have been done 39 471 better Dissatisfied; many things could have been better, but some were OK 14 173 Very dissatisfied; nothing much was helpful or useful 7 80 WALES % Yes N Not at all dissatisfied; no complaints 42 33 A little dissatisfied; there were some things that could have been done 34 27 better Dissatisfied; many things could have been better, but some were OK 18 14 Very dissatisfied; nothing much was helpful or useful 6 5 * 11 persons did not give an answer How your MS affects you Table 6: How your MS affects you Overall, how much impact does MS have upon your life now? (N=1278 RESPONSES) ENGLAND % Yes N None 1 8 Slight 14 170 Moderate 37 450 Major 48 573 WALES % Yes N None 1 1 Slight 18 14 Moderate 26 20 Major 55 42 22
  • 23. National Audit of Services for People with Multiple Sclerosis 2008: Full report Key recommendation one: specialised services "Specialised neurological and neurological rehabilitation services should be available to every person with MS when they need them usually when they develop any new symptom, sign, limitation on their activities or other problem, or when their circumstances change." Key messages: About three quarters of people with MS (73% England; 76% Wales) thought that they could be seen by a specialist neurologist if needed Only one third of people with MS (36% in England, 31% in Wales) thought that they could be seen by a specialist neurological rehabilitation service if needed Perceptions were similar in England and Wales These questions concerned the first NICE recommendation: the NHS should enable people with MS to be seen in a specialist service (neurology or neurological rehabilitation) whenever they need it. The questions focused on the beliefs and expectations of respondents, expecting these to be derived from some experience directly or through other people with MS locally. Table 7: Specialist neurology service If you or your GP thought you needed to be seen in a specialist neurology service (Services for diagnosis of MS and subsequent symptoms, and provision of specific drug treatments, especially disease modifying drugs): ENGLAND % Yes Yes No NK Could you be referred to a specialist neurology service? 73 888 43 289 WALES % Yes Yes No NK Could you be referred to a specialist neurology service? 76 61 5 14 Table 8: Specialist neurological rehabilitation service If you or your GP thought you needed to be seen in a specialist neurological rehabilitation service (Services providing an integrated rehabilitation programme through a multidisciplinary team when there are complex problems, aiming to help the person live independently): ENGLAND % Yes Yes No NK Could you be referred to a specialist rehabilitation service? 36 445 66 709 WALES % Yes Yes No NK Could you be referred to a specialist rehabilitation service? 31 25 4 51 23
  • 24. National Audit of Services for People with Multiple Sclerosis 2008: Full report Key recommendation two: rapid diagnosis ”An individual who is suspected of having MS should be referred to a specialist neurology service and seen rapidly within an audited time. The individual should be seen again after all investigations necessary to confirm or refute the diagnosis have been completed (also rapidly within an audited time).” Key messages: Over half (60%) of all newly diagnosed patients were seen by a neurologist within 6 weeks, and nearly half had all tests completed within six weeks of first seeing a neurologist The median (IQR) time between initial referral and final diagnosis was 20 (7-39) weeks; this implies that half of all people took more than 20 weeks in total to achieve final diagnosis (against a NICE standard of 12 weeks) Just over half of people were given written information about the disease and were given information about national support organisations after diagnosis, and 60%- 67% were given contact details about a specialist neurologist or specialist nurse Only 16% were given information on specialist therapists or an opportunity to attend an educational course and only 38% were given information about local support groups These questions concern the second key recommendation about the process of diagnosis. Consequently the questions only applied to those diagnosed in the last 12 months. There were 9% (123/1307) who had been diagnosed in the last 12 months. Four of these did not answer the rest of the questions. Therefore the data are from 118 people. 24
  • 25. National Audit of Services for People with Multiple Sclerosis 2008: Full report Table 9: Referral to specialist service ENGLAND % Yes Yes No NK Were you seen by a neurologist within 6 weeks of referral by your 60 67 35 9 GP? After the first consultation with the neurologist, were all tests 49 54 49 8 carried out within 6 weeks? WALES % Yes Yes No NK Were you seen by a neurologist within 6 weeks of referral by your 29 2 5 - GP? After the first consultation with the neurologist, were all tests 43 3 3 1 carried out within 6 weeks? Table 10: Time to diagnosis Interquartile 80th centile N of ENGLAND Median range range persons How many weeks passed from first seeing your GP to final confirmation of the 20 7-39 2-68 109 diagnosis N of WALES Median range persons How many weeks passed from first seeing your GP to final confirmation of the 16 6-40 7 diagnosis Table 11: Information about MS During or straight after diagnosis, were you given any of the following: ENGLAND % Yes Yes No NK Written information about MS? 56 62 46 3 Contact details for a specialist neurologist? 60 67 41 3 Contact details for a specialist MS nurse? 67 74 35 2 Contact details for a specialist MS therapist? 16 18 87 6 Information on local MS support groups? 38 42 64 5 Information on national MS organisations? 49 54 54 3 An opportunity to attend an educational programme? 16 18 88 5 WALES % Yes Yes No NK Written information about MS? 29 2 5 - Contact details for a specialist neurologist? 86 6 1 - Contact details for a specialist MS nurse? 71 5 2 - Contact details for a specialist MS therapist? 14 1 6 - Information on local MS support groups? 14 1 5 1 Information on national MS organisations? 29 2 5 - An opportunity to attend an educational programme? 14 1 6 - Key recommendation three: seamless services ”Every health commissioning organisation should ensure that all organisations in a local health area agree and publish protocols for sharing and transferring responsibility for and information about people with MS, so as to make the service seamless from the individual‟s perspective.” Key messages: 66% of people with MS reported that the sharing of information between health organisations made the transfer of care easy 25
  • 26. National Audit of Services for People with Multiple Sclerosis 2008: Full report 59% percent of people felt that information sharing from Health to Social Services made transfer of care difficult These questions relate to the recommendation that the NHS should ensure 'seamless care'; i.e. referrals onto other services should be easy and should avoid repeating things. Consequently replying to this question was restricted to people who has indeed been referred between organisations. For England 52% (632/1220) had been referred between different health or social care organisations; for Wales this was 51% (41/80). Table 12: Information regarding transfer Did you feel that the referring person and the new organisation shared sufficient information to make the transfer easy for you: ENGLAND % Yes Yes No NK From one hospital service to another e.g. physiotherapy to urology 66 419 132 81 From GP (or other local health professional) to hospital 73 464 94 74 From hospital or GP to Social Services 41 256 147 229 From hospital or GP to any other service 51 322 127 183 WALES % Yes Yes No NK From one hospital service to another e.g. physiotherapy to urology 71 29 6 6 From GP (or other local health professional) to hospital 73 30 6 5 From hospital or GP to Social Services 54 22 5 14 From hospital or GP to any other service 63 26 5 10 Key recommendation four: involvement in clinical decisions "All services and service personnel within the health care sector should recognise and respond to the varying and unique needs and expectations of each person with MS. The person with MS should be actively involved in all decisions and actions." Key messages: Half (54%) of people felt that they had been involved in clinical decision making as much as they wanted This question investigates whether people with MS felt that NHS staff had involved them in clinical decisions on diagnosis and treatment. Table 13: Involvement in decisions During your contact with NHS services, were you involved in decisions on tests, assessments, referrals, and treatments?* ENGLAND % Yes N Not at all / Less than I would have liked 46 563 As much as I wanted 54 649 WALES % Yes N Not at all / Less than I would have liked 53 41 As much as I wanted 47 36 *11 persons did not give an answer 26
  • 27. National Audit of Services for People with Multiple Sclerosis 2008: Full report Key recommendation five: sensitive but thorough assessment ”Health professionals in regular contact with people with MS should consider in a systematic way whether the person with MS has a „hidden‟ problem contributing to their clinical situation, such as fatigue, depression, cognitive impairment, impaired sexual function or reduced bladder control.” Key messages: 75% of people with MS thought that their initial assessment had been thorough, and the same proportion thought it had been carried out sensitively. These questions aimed to establish whether health professionals undertook thorough assessments in a sensitive manner. Table 14: Sensitive but thorough assessment Considering when you were first seen about a problem relating to your MS: ENGLAND % Yes Yes No NK Did the person or team do a thorough assessment, covering all the 66 810 295 115 important areas? Was the assessment carried out sensitively? 67 819 272 129 WALES % Yes Yes No NK Did the person or team do a thorough assessment, covering all the 64 51 20 9 important areas? Was the assessment carried out sensitively? 68 54 20 6 Key recommendation six: self referral ”Every person with MS who has been seen by a specialist neurological or neurological rehabilitation service should be informed about how to make contact with the service when he or she is no longer under regular treatment or review. The individual should be given guidance on when such contact is appropriate.” Key messages: Two thirds of people with MS felt able to refer themselves back to specialist neurology services, but only one third (30%) felt that this was possible for specialist neurological rehabilitation services These question whether people with MS who had been discharged (i.e. when no more appointments or admissions are planned) from a specialist service could refer themselves back to the specialist MS services. 27
  • 28. National Audit of Services for People with Multiple Sclerosis 2008: Full report Table 15: Self-referral If you need to, are you able to make contact directly with someone in the specialist service about a new problem: ENGLAND % Yes Yes No NK Specialist neurology service 67 813 142 265 Specialist neurological rehabilitation service 30 364 183 673 WALES % Yes Yes No NK Specialist neurology service 72 58 7 15 Specialist neurological rehabilitation service 28 22 11 47 Sentinel marker: skin pressure ulcers ”The commissioning health organisation should require all health care services including community services: to report every pressure ulcer occurring in a person with MS, to undertake and report an investigation into what could have been done to avoid its occurrence, to agree actions that should reduce the risk of the same situation leading to a pressure ulcer.” Key messages: 69 people (6%) developed a skin pressure ulcer over the year preceding this survey; only 37 were investigated by the NHS (as far as the person knew) These questions related to the „sentinel marker‟ of good services, namely that the NHS should investigate every new pressure ulcer, in order to reduce the number occurring. Table 16: Skin pressure ulcers ENGLAND % Yes Yes No NK Have you developed any pressure sores over the last 12 months? 6 69 1143 8 Was the cause investigated by someone from the health care team? 54 37 26 6 WALES % Yes Yes No NK Have you developed any pressure sores over the last 12 months? 10 8 71 1 Was the cause investigated by someone from the health care team? 63 5 2 1 Optional information Key messages: Fatigue was troublesome to 92% of respondents, and affected daily activities for 1- 2 hours each day in 69% Walking difficulties were experienced by 86%; 75% used aids or support while walking Transferring from bed to chair was possible independently in 84% 24% used wheelchairs indoors 72% of people had some bladder problems, with 56% experiencing incontinence and 13% using a catheter 67% of people had problems with pain and 72% of these had daily pain and 59% took daily analgesia (successfully in 58%) 28
  • 29. National Audit of Services for People with Multiple Sclerosis 2008: Full report The five top problems rated as the worst from the person‟s point of view were limited mobility (321), fatigue (193), pain (99), bladder problems (49) and poor balance (45); 56% felt these were well or moderately helped by the NHS The questions in this section were aimed at obtaining more clinical information about respondents in order to set the survey in a general context. Answering was optional but over 90% responded. Fatigue Table 17: Fatigue ENGLAND (N=1203 RESPONSES) % Yes N Do you have any problems with fatigue (tiredness) from your MS? 92 1101/1203 Has fatigue affected your daily activities over the last four weeks? 88 967/1093 Has fatigue prevented you from doing things for more than 1-2 hours 69 755/1093 each day over the last four weeks? WALES (N=76 RESPONSES) % Yes N Do you have any problems with fatigue (tiredness) from your MS? 92 70/76 Has fatigue affected your daily activities over the last four weeks? 90 62/69 Has fatigue prevented you from doing things for more than 1-2 hours 74 51/69 each day over the last four weeks? Mobility Table 18: Mobility ENGLAND (N=1201 RESPONSES) % Yes N Do you have any problems with walking? 86 1033/1201 Do you use a walking aid (e.g. stick, frame) or a person or furniture 75 763/1020 and walls to help you walk on a regular basis? Do you use a wheelchair or scooter outdoors? 58 603/1031 Do you use a wheelchair indoors? 24 252/1029 Can you get out of bed into a chair on your own? 84 860/1028 Can you get about your home without help - by whatever means? 78 805/1031 WALES (N=76 RESPONSES) % Yes N Do you have any problems with walking? 84 64/76 Do you use a walking aid (e.g. stick, frame) or a person or furniture 72 43/60 and walls to help you walk on a regular basis? Do you use a wheelchair or scooter outdoors? 70 45/64 Do you use a wheelchair indoors? 32 20/63 Can you get out of bed into a chair on your own? 73 47/64 Can you get about your home without help - by whatever means? 67 43/64 Bladder Table 19: Bladder ENGLAND (N=1199 RESPONSES) % Yes N Do you have any problems with your bladder? 72 867/1199 Have you had any problem with incontinence (wetting yourself) over 56 481/858 the last four weeks? Do you have a catheter in place permanently to empty your bladder? 13 109/866 WALES (N=76 RESPONSES) % Yes N Do you have any problems with your bladder? 74 56/76 Have you had any problem with incontinence (wetting yourself) over 60 33/55 the last four weeks? Do you have a catheter in place permanently to empty your bladder? 15 8/53 29
  • 30. National Audit of Services for People with Multiple Sclerosis 2008: Full report Pain Table 20: Pain ENGLAND (N=1200 RESPONSES) % Yes N Do you have any problems with pain from your MS? 67 802/1200 Is this pain present every day? 72 569/791 Do you take medication every day for this pain? 59 469/794 Is the pain controlled to your satisfaction? 58 458/785 WALES (N=78 RESPONSES) % Yes N Do you have any problems with pain from your MS? 68 53/78 Is this pain present every day? 71 37/52 Do you take medication every day for this pain? 58 30/52 Is the pain controlled to your satisfaction? 44 23/52 Most major concern People with MS were asked to describe (in free-text) what was the greatest problem they had with their MS – in terms of a particular symptom or difficulty. They were also asked how successful they thought the NHS had been in helping with this problem. The table below lists the major concerns, the most frequent of which were to do with fatigue and mobility. Table 21: Most major concern Symptoms Persons Fatigue 193 Mobility, walking 161 Mobility, other 160 Pain 99 Bladder & continence 49 Balance 45 Visual 39 spasticity/spasms 34 Motor control general 33 Sensory disturbance (not pain) 30 Being dependent on others 27 Motor control, leg 26 Acceptance/adjustment 19 variability/uncertainty 18 Bowel control/function 13 Work 13 Altered abilities 12 Frustration 12 “Everything” 10 Cognitive loss/function 9 Emotional problems 9 Motor control, arm 9 Health service availability 8 Speech 6 Vertigo/dizziness 6 Tremor 5 Unclassified 5 Epilepsy 2 Extended activities 2 Information lack 2 Sleep 2 Social life 2 Swallow 2 toilet use 2 Bathing 1 Breathing 1 Driving 1 Loss of confidence/esteem 1 Reduced/altered abilities 1 skin pressure ulcer 1 30
  • 31. National Audit of Services for People with Multiple Sclerosis 2008: Full report Table 22: Most major concern – NHS success How successful do you think that the NHS has been in helping you with this problem? ENGLAND (N=1177 RESPONSES) % Yes N Very successful 10 119 Moderately; there may not be much more that can be done 46 541 Slightly; they did at least try something 29 336 Not at all; they have not really tried 15 181 WALES (N=77 RESPONSES) % Yes N Very successful 16 12 Moderately; there may not be much more that can be done 42 32 Slightly; they did at least try something 21 16 Not at all; they have not really tried 22 17 31
  • 32. National Audit of Services for People with Multiple Sclerosis 2008: Full report RESULTS – ORGANISATIONAL AUDIT OF NHS ORGANISATIONS Key messages: In England 82% of Trusts, 84% of PCTs, and 60% of SHAs participated The proportions were lower in Wales The first table shows the total number of organisations approached and the number who provided usable data. A few organisations registered but then did not complete the questionnaire. Some of the Trusts initially approached made it obvious that they would not normally see anyone with MS (e.g. a hospital specialising in cardiac surgery), and they have not been included. The Health Commission Wales was contacted and it agreed that it was responsible for specialist commissioning for MS services, but it did not provide any data. Participants in organisational audit with analysable data: Table 23: Participating sites SHA/RO PCT / LHB Trust ENGLAND Approached (n=10) (n=150) (n=148)* Analysed (n=6; 60%) (n=126; 84%) (n=122; 82%)* WALES Approached (n=3) (n=22) (n=9)* Analysed (n=1; 33%) (n=14; 64%) (n=5; 55%)* * excludes 10 from England and 3 from Wales that are served by the Walton NHS Trust (including the Walton Centre for Neurology and Neurosurgery). The data returned from the Walton are described separately. It is apparent that a majority of relevant organisations provided data for the audit. However a significant minority did not and the reasons for not doing so are not known. It is possible that some Trusts did not care for anyone with multiple sclerosis, but this is unlikely as we excluded as far as we could specialist Trusts that focused only on non-neurological patients. Four Strategic Health Authorities declined to participate; some stated that the subject matter of the audit was not within their remit; they did not acknowledge any role in monitoring the implementation of NICE guidance. It is also apparent that a smaller proportion of organisations from Wales participated. Managerial responsibility for services for people with MS Key messages: Less than half of all organisations (17% - 44%) had someone specifically responsible for services for people with MS Nearly half (48%) of all provider Trusts did not have someone responsible for either MS services or the NSF This question was asked to ascertain the level of interest the organisation had in MS specifically and in long-term neurological conditions in general. This would also indicate, to a 32
  • 33. National Audit of Services for People with Multiple Sclerosis 2008: Full report minor extent, the likely validity of information provided; organisations without a specialised lead would be less likely to have readily available relevant information. Long-term conditions NSF: Does Table 24: Cross-tabulations MS & NSF responsibilities in your Trust / provider unit have Trusts someone with managerial responsibility (i.e. within their job description or title) for services No NK Yes No 32 22 24 England Multiple sclerosis: Does your Trust / provider unit minus have someone with managerial responsibility (i.e. NK - 4 1 Walton within their job description or title) for services Yes 6 2 31 Wales Multiple sclerosis: Does your Trust / provider unit No - 3 - minus have someone with managerial responsibility (i.e. Walton within their job description or title) for services Yes - 2 - Table 25: Managerial responsibilities within Trusts Does your organisation have someone with managerial responsibility (i.e. within their job description or title) for services in the following areas” SHA / RO PCT / LHB Trust % % % ENGLAND Yes N Yes* yes no NK Yes* yes no NK Multiple sclerosis 17 1/6 44 55 59 12 32 39 78 5 Specialist neurology 17 1/6 46 58 56 12 73 89 30 3 Specialist neurological 17 1/6 60 75 38 13 52 63 51 8 rehabilitation Long-term conditions NSF 83 5/6 83 105 14 7 46 56 38 28 % % % WALES Yes N Yes* yes no NK Yes* yes no NK Multiple sclerosis 0 0/1 7 1 13 - 40 2 3 Specialist neurology 0 0/1 14 2 12 80 4 1 Specialist neurological 0 0/1 7 1 12 1 60 3 2 rehabilitation Long-term conditions NSF 0 0/1 64 9 5 0 - - 5 Multiple sclerosis: No Spec Neurology: Yes WALTON Spec Neuro Rehab: Yes Long-term Cond NSF: Yes * No and Not Known responses included in denominators Specialised clinical time contracted specifically for people with multiple sclerosis Key messages: contracted professional time devoted to people with MS within organisations is low providers contract more specific time than other organisations This question was asked to gain an insight into the priority organisations gave to services specifically for people with MS. 33
  • 34. National Audit of Services for People with Multiple Sclerosis 2008: Full report Table 26: Clinical time devoted to multiple sclerosis In your organisation, how much specialised clinical time (defined in job plan or description) is devoted to multiple sclerosis by your employed staff PCT / LHB Trust ENGLAND % N Median IQR % N Median IQR Doctors (number of 22 26/119 2 1-5 62 72/116 2 1-4 programmed activities) Specialist 48 57/120 1 1-3 67 79/118 1 1-2 nurses (WTE) WALES % N Median IQR % N Values Doctors (number of 0 0/13 - - 60 3/5 1, 7 and 9 programmed activities) Specialist 0 0/13 - - 80 4/5 0.3, 2, 2.5 and 5.2 nurses (WTE) 14 consultant PAs, 3 WTE Nurse specialists WALTON nurses IQR Interquartile range PCT Primary Care Trust WTE Whole Time Equivalent Process of performance monitoring/ commissioning services Key messages: Services are rarely commissioned using any data that might determine need for services by people with MS (6%) or even by people with long-term neurological conditions (15%) Only a minority of commissioners plan to use formal needs assessments when commissioning next year (MS, 6%; LTC, 25%) patients are rarely involved in commissioning decisions or planning services a significant proportion (30%-50%) of service commissioners also provide services directly to people with MS This set of questions was asked to understand how the type of and number of services commissioned or provided were determined by organisations. It was expected some form of independent assessment of need might be used. It is striking that commissioning of services is not based on a formal needs assessment. Needs assessment at a broader level cannot possibly give any useful information when commissioning services for people with neurological problems in general or MS in particular. The low level of committed plans to use formal needs assessment would suggest a low priority for commissioning services to meet actual clinical need. 34
  • 35. National Audit of Services for People with Multiple Sclerosis 2008: Full report Table 27: Formal needs assessment SHA / RO PCT / LHB When monitoring PCTs / LHBs, Have you used a formal needs have you used a formal needs assessment for your population assessment for your when commissioning services? population? ENGLAND % Yes N % Yes N Specifically for people with MS - 6 7 In line with the NSF-LTC 33 2 15 19 For neurology as a whole - 6 8 At a broader level 50 3 51 64 No 17 1 13 17 Not known - 9 11 WALES % Yes N % Yes N Specifically for people with MS - - In line with the NSF-LTC - 7 1 For neurology as a whole - - At a broader level - 71 10 No 100 1 21 3 Not known - - Table 28: Plans to use formal needs assessment next year SHA / RO PCT / LHB* Have you plans to use a formal Have you plans to use a formal needs assessment when needs assessment next year? commissioning services next year?? ENGLAND % Yes N % Yes N* Specifically for people with MS - 6 7 In line with the NSF-LTC 33 2 25 30 For neurology as a whole - 13 16 At a broader level 33 2 39 47 No 33 2 6 7 Not known - 10 12 WALES % Yes N % Yes N* Specifically for people with MS - - In line with the NSF-LTC - 7 1 For neurology as a whole - 7 1 At a broader level - 79 11 No 100 1 7 1 Not known - - *Excludes those already using a formal needs assessment for their population when commissioning services Only a minority of commissioning organisations involve patients with the process of commissioning even at the level of all neurological disease, let alone at the level of services for people with MS where only 14% involve people with MS. 35

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