ME-CFS and Fibromyalgia Task and Finish Group Recommendations Implementation Action Plan Update May 2017

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1 ME-CFS and Fibromyalgia Task and Finish Group Recommendations Implementation Action Plan Update May 2017 PTHB Final

2 Contents Background and Context... 3 Current Services... 3 Developments... 4 Gap analysis... 4 Reporting structures... 4 Conclusions... 4 Powys Teaching Health Board 3 Year Action Plan... 5 PTHB Final

3 Background and Context Since the publication of our Action Plan in 2015, we have continued to work towards our target timescales and developed our service in accordance to gaps in the service and feedback from service users and the public. There has been full attendance at the Welsh Government Implementation Group for CFS/ME/fibromyalgia meetings to feedback on developments and liaise with other Health Boards across Wales. Current Services Current Pathway for Adults PTHB Final

4 Developments Following consultation with the public it was identified that people declined attendance at face to face groups owing to limitation by symptoms, logistics of travel or difficulty taking time off work. This information coupled with a need to ensure prudent delivery of services within the rural environment of Powys, led to a bench marking exercise of services nationally and internationally who use Online platforms to deliver intervention. Subsequently the Online Self Management Programmes for Long Term Conditions was developed. The key aim of the project was to improve access to self management programmes both in terms of geographical accessibility and timeliness. In doing so it will aid the better management of all long term conditions including CFS/ME/FM. Prior to the programme, people had to wait until a programme was run in their area or have to travel significant distances. There is a great deal of research evidence which suggests that giving people access to high quality health information in a timely manner and engaging them in a process which helps them modify their behaviour to improve their health brings significant benefits for health status and reduced unscheduled care episodes. The nature of the group approach also reduces social isolation and by increasing the skills of the participants in the use of technologies such as Skype also gives individuals another way to engage with local communities. In addition to this we have also opened up elements of our service for self referral, to enable individual s to access intervention in a timely manner. Gap analysis At present, the following potential gaps in service have been identified although services or commissioning arrangements are in place for these groups. Children s services At present the Pain and Fatigue Service only works with adults although team members have carried out consultation work in cases involving children occasionally. Powys also has a robust Paediatric service although we have no identified specialists in CFS/ME nor Fibromyalgia. Children with MF-CFS are also supported by the Child and Adolescent Mental Health Service (CAMHS) although there is some debate about whether this is the most appropriate place for them to be seen. Transition - We are liaising with Primary Care, addressing issues with regard to Transition on a case by case basis. Home bound people Our aim within the Health Board is to offer services that are accessible to an individual s lifestyle and needs. Therefore we provide the option of our initial consultations via face to face, telephone or Skype. We also deliver our Invest In Your Health Programme through an online group which individuals can participate in using their home technology systems. Reporting structures The day to day operational management of the service is hosted within the South Locality management structure even though community programmes are run throughout the county. The development of services for ME-CFS and Fibromyalgia are over seen by the Neurological Delivery Plan Steering Group where CFS-ME and Fibromyalgia are standing items on the agenda. Conclusions Over the next three years we will continue to develop the services available to people with CFS-ME or Fibromyalgia with a focus on identifying and remedying any gaps in current services either through direct provision or commissioning services. In doing so we will be mindful of the Health Board s overarching vision and the principles which govern NHS Wales. PTHB Final

5 Powys Teaching Health Board 3 Year Action Plan MYALGIC ENCEPHALOPATHY/CHRONIC FATIGUE SYNDROME (ME/CFS) and FIBROMYALGIA (FM) Recommendation from Task and Finish Group 1: Each Health Board to identify an Executive Board member with responsibility for overseeing implementation of the recommendations below 2: Each Health Board to 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. 3: Each Health Board to 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 4-8 Progress to date Action Planned Timescale David Murphy Director of Therapies is Executive Lead Owen Hughes, Head of Pain and Fatigue Management and Clare Clark Advanced Practitioner are identified as the clinical leads. Specialists from most areas have been identified. We are liaising with PAVO and have responded to their One Voice queries to ensure concerns of the public are heard and answered. PTHB Final The Clinical Lead liaises with the Executive Lead on progress to date and feedback from Welsh Government meetings Owen Hughes and Clare Clark will liaise with colleagues to agree and facilitate service developments. Liaison with PAVO as required. Using social media to engage with the public about development of services. Feedback from participants attending programmes is used to evaluate and develop services. Engaging in ongoing co production activities to continue development of services. Ongoing

6 4: Each Health Board to develop effective local pathways for children and adults with ME/CFS and Fibromyalgia. 5: Each 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 6: Each 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 Effective pathways for adults are already in place. With regard to children s services and transition arrangements, we are establishing links with Primary Care. Raising awareness is already underway within some local practices. Practices have been informed of the Fibromyalgia training available through the Wales Deanery Consultations and self management programmes are offered via Skype for people to access from their own home. Ongoing liaison with Primary Care to establish links and address this recommendation on a case by case basis A blended learning approach is being developed which draws on existing resources and complements them with face to face educational activities Skype Consultations and self management programmes run as business as usual Process started January 2018 Process started and continues to be developed. PTHB Final

7 7: Each Health Board to 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 8: Each Health Board to release a representative (or representatives) to form an All Wales Implementation Group (which will also include third sector patient representatives) The initial Action Plan was reported to the Board in August 2015 with the update on the progress of the neurology delivery plan. A Health Board representative has attended all meetings to date The current action plan is amended and updated as progress is made and we continue to work towards our target timescales. Owen Hughes or Clare Clark will attend this group. PTHB Final