ME-CFS and Fibromyalgia Delivery Plan

Transcription

1 ME-CFS and Fibromyalgia Delivery Plan

2 CONTENTS 1. BACKGROUND AND CONTEXT The Vision The Drivers What do we want to achieve? Prudent Healthcare 4 2. ORGANISATIONAL PROFILE Organisational Overview 4 3. LOCAL SITUATION Demography Deprivation Life Expectancy Prevalence 7 4. DEVELOPMENT OF HDUHB ME-CFS AND FIBROMYALGIA ACTION PLAN 8 5. PERFORMANCE MEASURES/ MANAGEMENT 8 6. ACTION PLAN 8 2

3 1. BACKGROUND AND CONTEXT In 2009 a ME-CFS Task and Finish Group was established who recommended the use of 2 care pathways in Wales (one for use in suspected ME-CFS and one for use in the management of the condition). A separate pathway was developed for Fibromyalgia. The pathways were based on Map of Medicine Care Pathways and adapted for use in Wales. In May 2011 the then Chief Executive of the NHS wrote to Chief Executives of all Health Boards requesting them to develop services in line with the pathways with immediate effect. On seeking updates on progress in 2012 it was apparent that limited improvement had been achieved.. This suggested a lack of prioritisation and supporting measures were needed to enable implementation of the pathways. In 2013 the then Health Minister, Lesley Griffiths AM decided to reconvene the Task & Finish Group, a decision endorsed by the current Minister for Health & Social Services, Mark Drakeford AM. The Task and Finish Group met three times over a 6 month period completing the recommendations endorsed by the Minister for Health for implementation support through each Health Boards local delivery plan. Both ME-CFS and Fibromyalgia are complex conditions and although there are examples of good practice in Wales, challenges exist in accessing appropriate care and services. At the end of 2013 an ME-CFS and Fibromyalgia Task and Finish Group was reconvened to focus on the practical means of improving NHS services and patient experience. The Task and Finish Group identified eleven recommendations In making its recommendations, the Task and Finish Group has sought to identify the infrastructure required to support system change, including the implementation of more effective pathways for ME-CFS and Fibromyalgia and to improve knowledge in the healthcare workforce., 1.1 The vision: For our population we want to: increase timely diagnosis, allowing effective care to commence promptly provide effective self management advice much earlier minimise the chances of people s conditions becoming severe and/or requiring increased health service resources streamline referrals, ensuring more efficient and economic use of resources improve the experience and outcomes for patients 1.2 The Drivers The true prevalence of ME/CFS in the UK is unknown, and estimates vary according to definition used, but has been estimated at between 0.2% and 0.4%. Advice provided by Public Health Wales to the Welsh Government in 2009 suggested using the mid range prevalence rate of 0.3% which would suggest around 9,500 people affected in Wales. Approximately 25% are severely affected. Estimates for prevalence of Fibromyalgia are higher, at 2% or above, although under-diagnosis makes estimates hard to verify. 1.3 What do we want to achieve? HDUHB Delivery Plan sets out actions to improve outcomes in the following key areas: Timely diagnosis A coordinated Health Board approach, led by a clinical lead or leads Understanding and implementing the Map of Medicine pathways locally Children s services and the transition from adult to children s services Improved access to hospital and domiciliary services 3

4 1.4 Prudent Healthcare The development of this service will embrace the principles of prudent health care utilising coproduction and shared decision making as part of the development al process. Underpinning the development of clinical pathways is the need for the person to take an active role in deciding which element of the pathway they wish to engage with. 2. ORGANISATIONAL PROFILE 2.1 Organisational Overview Hywel Dda University Health Board (HDUHB) covers a quarter of the landmass of Wales and is one of the most sparsely populated health board areas. It contains the local authority areas of Pembrokeshire, Carmarthenshire and Ceredigion. Hywel Dda UHB has four district general hospitals; Bronglais Hospital Glangwili Hospital Prince Philip Hospital Withybush Hospital With 13 per cent of Wales population the area s age profile is similar to that of the Country as a whole. There are, however, notable differences with fewer people aged and more people aged In rural Pembrokeshire and Ceredigion, there are relatively high numbers of older people. Figure 1 Proportion of population by age and sex Hywel Dda Health Board and Wales, 2010 Produced by Public Health Wales Observatory, using 2010 mid year population estimates, ONS Hywel Dda females Hywel Dda males Wales females Wales males Proportion (%) of population

5 Current population projections suggest that the total population of Hywel Dda will rise to 425,400 by LOCAL SITUATION 3.1 Demography Hywel Dda is one of the most rural Health Boards in Wales. Overall, health is generally similar to or better than the Wales average. Ceredigion consistently fares better than Pembrokeshire and Carmarthenshire, where there are pockets of poor health in urban areas. The association between deprivation and health is clearly apparent. Many health outcomes are statistically significantly worse than Wales as a whole in the following areas of high deprivation: - Carmarthenshire: Glanymor, Tyisha, Lliedi - Pembrokeshire: Parts of Pembroke, Pembroke Dock and Haverfordwest. 3.2 Deprivation Deprivation is a wide concept that refers to the problems caused by a lack of resources and opportunities. The Welsh Index of Multiple Deprivation (WIMD) is the official measure of deprivation in small areas in Wales and measures the relative concentrations of deprivation at the small area level. In figure, the Lower Super Output Areas in Hywel Dda have been ranked and divided into fifths depending on their WIMD score. LSOAs in the most deprived fifth are coloured dark blue through to the least deprived fifth in light blue.an area itself is not deprived: it is the circumstances and lifestyles of the people living there that affect its deprivation rank. It is important to remember that not everyone living in a deprived area is deprived and that not all deprived people live in deprived areas. There are areas of deprivation, including parts of Llanelli, Pembroke Dock and Cardigan. Around 10 per cent of LSOAs are among the most deprived fifth in Wales with 5 per cent in the least deprived fifth. However, within less deprived areas there are often pockets of hidden deprivation. Figure 3 5

6 Local fifths of deprivation: Hywel Dda Measuring inequalities Most health outcomes are worse for lower socio-economic groups, indicating inequities in health outcomes. Inequities can also be apparent in access and use of health services. There is some evidence in the UK that lower socio-economic groups use preventative health services less and may have less access to secondary care except for emergency care. 3.3 Life expectancy Life expectancy in Hywel Dda, as in Wales in general, is increasing. In the average life expectancy in males was 77.4 years and 82.0 in females. However, this improvement is not experienced equally across all areas. The Slope Index of Inequality (SII) measures the absolute gap in years of life expected between the most and least deprived, taking into account the pattern across all fifths of deprivation within the UHB area. This shows there are substantial gaps in life expectancy between people living in the most and least deprived areas of the UHB area. There are even more stark differences in healthy life expectancy and disability-free life expectancy. For example in men, the gap in life expectancy between the most and least deprived fifths is more than 11 years, while the gap in healthy life expectancy is over 22 years. Moreover, these differences are increasing despite the overall improvement. 6

7 Estimated population (thousands) x Figure based population projections for Hywel Dda LHB, persons: 2006 to 2031 Data source: Statistical Directorate, Welsh Assembly Government / ONS Current population projections suggest that the total population of Hywel Dda will rise to 425,400 by 2033, with a rise in those aged over 65 years from 88,200 in 2013 to 127,700 by Figure 5 fe expectancy e expectancy e expectancy fe expectancy Disability-free life expectancy Females Comparison of life expectancy, healthy life expectancy and disability-free life 75.9 expectancy Life at birth, Hywel Dda 80.6 HB and Produced expectancy by Public Health Wales Observatory, 81.7 using ADDE/MYE (ONS), WIMD/WHS (WG) Life expectancy with 95% 64.7 Inequality gap Healthylife confidence interval (SII in years) 60.8 Males expectancy Healthy life expectancy Life expectancies in Hywel Dda Life expectancy Disability-free life expectancy e expectancy 66.1 Disability-free life expectancy 59.5 e expectancy 62.5 Females Life expectancy Healthy life expectancy Disability-free life expectancy Produced by the Public Health Wales Observatory, using ADDE/MYE (ONS), WIMD/WHS (WG) Measuring inequalities Current projections see a rise in the older population (75 years and over) from 35,000 (10% of the total population) in 2006 to 70,000 (16% of the total population) in These estimates are based on assumptions about births, deaths and migration. The increase in the number of older people is likely to lead to a rise in chronic conditions such as circulatory and respiratory diseases and cancers. 7

8 Meeting the needs of these individuals will be a key challenge for the Health Board and its local authority partners. The Health Board population is predominantly white British with 1.0 per cent of the population coming from a minority ethnic background. 3.4 Prevalence The estimated prevalence of ME-CFS is 0.2% - 0.4%. Hywel Dda s current population is 383,900. Therefore: 0.2% of the population would be 769 people 0.4% of the population would be 1536 people This means that a general practice with 10,000 patients is likely to include up to 40 people with ME- CFS and it is thought that at least half of these people will need input from specialist services at some point in their illness. The estimated prevalence of fibromyalgia is between 0.7% - 4.5%. Hywel Dda s current population is 383,900. Therefore: 0.7% of the population would be 2678 people 4.5% of the population would be 17,274 people 4. DEVELOPMENT OF HYWEL DDA UHB ME-CFS AND FIBROMYALGIA PLAN A team of multidisciplinary clinicians, managers, third sector organisations and representatives form people who live with ME-CFS or fibromyalgia, have been involved in the development of this delivery plan. This has enabled the plan to be clinically led, putting patients at the centre of our service development. 5. PERFORMANCE MEASURES/MANAGEMENT The Welsh Government s ME-CFS and Fibromyalgia Plan contained an outline description of the national metrics that Health Boards and other organisations will publish: Outcome indicators which will demonstrate success in delivering positive changes in outcomes for the population of Wales. 8

9 National performance measures which will quantify an organisation s progress with implementing key areas of the Delivery Plan. Progress with these outcome indicators will form the basis of our annual plan report. We will produce our first annual report in March Review of milestone for achievement will be part of our performance review procedures. 6. ACTION PLAN The following table sets out the detailed action plan for Hywel Dda UHB. 9

10 Hywel Dda University Health Board ME-CFS and Fibromyalgia Plan June 2015 Objectives Action Lead Current Position Progress 1. The Health Board will identify an Executive Board member with responsibility for overseeing implementation of the recommendations OUTCOME: Named Executive Lead The Board member should act as an advocate for service development, support the clinical leads(s) (see recommendations) and provide accountability for progress Board member identified ME-CFS AND Fibromyalgia working group will report to the Executive Lead a minimum of twice a year Katherine Davies Executive Director for Integrated Care, Health Sciences and Allied Health Professionals Claire Hurlin Complete Complete Next meetings planned for November The Health Board will identify by April 2015 an appropriate clinical lead or leads for ME-CFS and Fibromyalgia to take forward the recommendations and to identify a home for services for ME-CFS and Fibromyalgia OUTCOMES: Clinical Lead identified Home for services identified 10

11 Action Lead and Partners Current Position Progress Role must be recognized in job plans and leads should have access to some administrative support Need to understand how this is implemented into job plan. Need to identify administrative support Dr Phil Avery Dr Paul Underwood identified as lead for ME- CFS. Further discussion needed to identify if he will lead for Fibromyalgia or another clinical lead to be identified Depending on the available expertise within the health board, it may be appropriate to appoint separate leads for ME- CFS and Fibromyalgia, or to appoint a single lead to provide leadership for both patient groups ME-CFS Lead Fibromyalgia Lead Leads to be supported by Claire Hurlin and the working groups to identify and deliver patient centred out comes for the service Dr Phil Avery Claire Hurlin ME-CFS Working Group Fibromyalgia Once lead established need to discuss whether there is a need to appoint separate leads Agreed initially with champions that separate working groups are needed at first to consider a joint group once agreed plans and out comes decided Implement regular meetings for working group Identify work plan for group linked to action plan Identify priorities for each 11

12 year to 2018 The clinical lead should report regularly to the Board member Identify how often report needs to go to Executive Lead Need to indentify how to ensure report on agenda for Board meetings at least annually Lead/ Claire Hurlin Clinical Leads to be confirmed and discussion to take place with Executive Lead There is scope for some flexibility in deciding which speciality ( or specialities) should take the lead, but the home should not be located in mental health services Home identified Ensure action plan is tabled as an agenda item at the MSK Population Health Group Lead /Claire Hurlin This work sits under the MSK Population Health Group Contact made with Chairs of group Claire Hurlin member of group Complete As both ME-CFS and Fibromyalgia demand a multidisciplinary approach, the aim is to provide coordination and coherence in referral that has been lacking so far, not to suggest that the home speciality would see all patients Stakeholder group established 2012 for ME-CFS Stakeholder group for ME-CFS have been meeting 3 times a year but have not met in 2015 as yet Pathway for ME-CFS in draft format Information book for primary care in progress Meeitng planned for November 2015 Review members of group Meeting planned with Fibromyalgia Wales Chair and Claire Hurlin Meeting undertaken 20/07/15 and plan sent to Carol Ross for comments Awaiting comments 12

13 3. The Health Board will identify relevant specialists and those with expertise or interest in developing services to establish a stakeholder group or groups (including patient representation) to support the clinical lead or leads in ensuring the effective delivery of recommendations 4- OUTCOMES: Established Stakeholder Group with relevant MDT The stakeholder group must bring together a multidisciplinary group, with a range of relevant specialists and patient representatives to advise on and contribute to delivering an effective care pathway for ME- CFS and Fibromyalgia. Identify stakeholder group Ensure document for primary care re ME-CFS is completed Ensure Primary Care document distributed and an educational needs identified Complete pathway for care of adults with ME-CFS Complete pathway for children and Young People with ME-CFS Complete pathway for care of adults with Fibromylagia Complete pathway for children and Young People with fibromyalgia Write a self management programme for people living with ME-CFS and Fibromyalgia Work with palliative care teams to understand the support required for those with severe ME-CFS and Fibromyalgia Work with the CCNS team in Carmarthenshire to see if the fatigue management programme can be rolled out across Hywel Claire Hurlin/ Jan Russell/ Carol Ross Working/stakeholder group Secretarial support Laura Lloyd Davies Hywel Dda care pathway adults draftv Completed completion date December 2016 Pathway to be complete September

14 Dda and Fibromyalgia Work with Occupational therapy to understand the referral and treatment pathways for those with a diagnosis of ME-CFS and Fibromyalgia Work with Physiotherapy services to understand the referral process and treatment pathways for those with ME-CFS and Fibromyalgia Work with community nursing services to ensure skills available to support people with severe ME-CFS and Fibromyalgia available in the community Physiotherapy in ME.ppt April 2016 April 2016 The stakeholder group(s) should be chaired by the clinical lead who report to the Board member with responsibility for ME-CFS and Fibromyalgia. Discuss with Lead Claire Hurlin Dr Paul Underwood already a member of working/stakeholder group Completed 4. The Health Board will develop effective local pathways for children and adults with ME-CFS and Fibromyalgia, by drawing on the following OUTCOMES: Local Pathways of care of ME-CFS and Fibromyalgia Map of Medicine - Chronic fatigue syndrome and myalgic encephalopathy (CFS-ME) Consider this work when completing local pathways Stakeholder group 14

15 suspected Map of Medicine - Chronic fatigue syndrome and myalgic encephalopathy (CFS-ME) management Consider this work when completing local pathways Stakeholder group Scottish Good Practice Guidance on ME-CFS - GoodPracticeStatementonMEC FSforGeneralPractitioners.Aspx Consider this work when completing local pathways Stakeholder group Neurological Conditions Delivery Plan - lth/publications/health/strateg ies/neurological/?lang=en Consider this work when completing local pathways Stakeholder group 4. The Health Board should undertake work to raise awareness of ME-CFS and Fibromyalgia in primary care, to support timely diagnosis and effective management of both children and adults OUTCOMES: information booklet for primary care referral to diagnosis pathway for primary care ME-CFS and Fibromyalgia to become experts in their own care and self management, as well as providing clear pathways for referral for specialist support as appropriate. Ensure there is a specialist referral pathway Ensure access to self management programmes are available Stakeholder Group EPP EPP Senior Coordinator/ Head CCM Generic self management programmes available across the health board See section 3 re plans for writing ME-CFS/ Fibromyalgia specific self 15

16 Discuss in stakeholder groups how we support self management for those unable to access a course Working/stakeholder group management programme Fatigue programme available in Carmarthenshire. Work with CCNS to see if this programme can be established across Hywel Dda Working/stakeholder group Investigate the use of e- learning July 2016 Work with fibromyalgia sub group to plan the roll out of the fibromyalgia e-learning programme and how to identify those who have undertaken the e-learning programme so that year on year the numbers completed increase The best methods to provide support for primary care practitioners will need to be further explored. The Implementation Group (recommendations 8 and 9) may advise on an All Wales approach, but delivery would be managed Need to discuss at local stakeholder group how bets to support primary care Report back to All Wales group when needs identified Stakeholder group Invite more people from primary care to be part of the working/stakeholder group Understand the needs of primary care to develop 16

17 locally as appropriate. support requirements Complete tools to support primary care including pathways and guidance Understand the needs of people with ME-CFS and Fibromyalgia to develop support requirements There is a need to meet the intensive and specialist care needs of the small numbers of people who need inpatient care or palliative care, and the larger group who may need to access domiciliary care. There is scope for the expansion of the delivery of telemedicine services via Skype (for example), in line with Welsh Government commitments to incorporating innovations for patient 5. The Health Board to identify the means by which they will provide support to people with ME-CFS and Fibromyalgia who need to attend hospital, or receive palliative care, as well as ensuring the delivery of care as close to home as possible, including the provision of telemedicine/home visits to severely affected patients unable to attend appointments via other means OUTCOMES: Pathway to support palliative care Delivery of care closer to home Use of telemedicine/telehealth Support re outpatients appointments To develop palliative care pathway To develop care closer to home pathway To develop a pathway to support the use of technology Social services link NHS working towards the use of Lync a skype type software for Microsoft need to get an understanding of the all Wales developments from Health Board IT department Discuss with clinical lead for Working/ Stakeholder Group to identify leads to develop this work Claire Hurlin Organise a meeting with palliative care, community services, technology teams with working/stakeholder group Identify led for this work in Informatics department to understand the role out of this service 17

18 consultation and treatment reviews, and care could be delivered by working with chronic management (though access to specialists may be required for those whose care could not be provided by community teams). telehealth what applications may be suitable for people with ME- CFS and Fibromyalgia Review e-learning modules for health professional for Fibromyalgia p/understanding-fibromyalgia Sarah Hicks March 2016 December The Health Board will produce a practical, realistic and timed action plan to improve patient experience of services by people with ME-CFS and Fibromyalgia during , and report annually on progress OUTCOMES: action plan in place Annual reports An initial draft action plan should be prepared by June 2015, indicating actions which the Health Board intends to take to implement the above recommendations. A final action plan should be developed by September Draft complete and circulated to stakeholder group to review and support Review and update action plan every six months Claire Hurlin Send out Draft action plan by end July 2015 Draft action plan sent out to all member s of stakeholder group June An annual progress report should be prepared in March 2016, March 2017 and March Action plans and annual reports should be submitted to the Welsh Government and published on Health Board websites, as well a submitted March 2016 March 2017 March 2018 Action plan agreed by Health Board and Submission to Welsh Government Action plan published on Health Board website Draft action plan in place by September 18

19 to the Implementation Group for peer review and shared learning Sign off by Health Board by September 2015 Posted to internet October The Health Board will release a representative (or representatives) to form an All Wales Implementation Group (which will also include third sector patient representatives) OUTCOMES: Representation at All Wales Group Representatives would be the Health Board clinical leads, with the group naturally being formed of a variety of different healthcare professionals Agree representation at All Wales Implementation Group Executive Lead Current Health Board representation Paul Underwood Clinical Lead Audrey Rogers Assistant Director of therapies and Health Science Claire Hurlin Head CCM Additional representatives should be invited to join (or otherwise contribute) to the Group as appropriate to ensure As needed 19

20 an appropriate multidisciplinary approach. In particular, members of the Task and Finish Group have identified the importance of involving a paediatrician Patient representatives will play an important role on the Group. WAMES representative on group Fibromyalgia Wales representative on group Welsh Government will be represented on the Group. The Group will appoint a Chairperson from the NHS, in agreement with Welsh Government Chair and Vice Chair Appointed Chair - Professor Jonathan Richards, FRCGP, Visiting Professor of Primary Care, University of South Wales and Locality Clinical Director, Cwm Taf UHB Vice Chair Carol Ross, Chair of Fibromyalgia Wales. If Carol is unable to attend Jan Russell of WAMES will deputise. 9. The Implementation Group to provide an All-Wales overview of service-improvement for ME-CFS and Fibromyalgia in implementing recommendations 1-8 OUTCOMES: All Wales service improvement plan for ME-CFS and Fibromyalgia 20

21 Share good practice and provide peer support and challenge to all Health Board s in their implementation of the above recommendations Implement once All Wales Group decision has been made All Wales Implementation Group Peer review has been agreed for each Health Boards Plans Provide advice on an All-Wales approach to the provision of training and support for GPs Keep under review the availability of guidance for the diagnosis and management of ME/CFS and Fibromyalgia; disseminate emerging good practice across Health Boards; identify available opportunities to collaborate with Universities and Public Health Wales on research projects relating to ME/CFS and Fibromyalgia and use the experience of service improvement in Wales to contribute to broader UK or international development of best practice guidance. Convene or coordinate, as appropriate, work to focus on the specific (and different) needs of people with ME-CFS and Fibromyalgia, undertaking individual work streams if required, in order to drive progress with the different pathways Implement once All Wales Group decision has been made Implement once All Wales Group decision has been made Implement once All Wales Group decision has been made All Wales Implementation Group All Wales Implementation Group All Wales Implementation Group 21

22 Convene a multi-agency national group (including education and social services) to advise health boards and local authorities on delivering appropriate pathways for children and young people with ME-CFS and Fibromyalgia, and ensuring effective transition to adult services Consider availability of data and measures to monitor and report progress, in order to drive continuous improvement in Health Boards and to provide transparency to people with ME-CFS and Fibromyalgia and to the Welsh Government. Implement once All Wales Group decision has been made Implement once All Wales Group decision has been made All Wales Implementation Group All Wales Implementation Group Advise the Minister, following publication of Health Board annual reports on progress made and any further development needed All Wales Implementation Group 22