Job Title:Neuromuscular Policy and Engagement Officer

Location:Office based (London)

Department:Campaigns, Care and Information

Responsible to:Neuromuscular Outreach Manager

Responsible for:No direct reports but will supervise volunteers

Main Purpose of Job:

The Neuromuscular Policy and Engagement Officer will play an important role in the delivery of the successful national Bridging the Gap campaign and project to improve NHS care for people affected by muscle-wasting conditions across England.
You will work with families, clinicians and NHS commissioners to increase the number of neuromuscular specialists supporting people with muscle-wasting conditions. You will also make areal difference to the lives of the 70,000 people affected by these conditions by driving forward the education and upskilling of health professionals and play a leading role in the project’s NHS policy work to improve access to wheelchairs and better funding mechanisms.

Lead on the development and management of neuromuscular clinical networks and drive forward the development of neuromuscular services across the region.
Coordinate the development of neuromuscular forums and working groups across three regions and identify and work to fill gaps in local neuromuscular services.
Oversee project upskilling work streams by organising neuromuscular training events for health professional across England to ensure knowledge for neuromuscular conditions and their management is improved.
Coordinate and develop the project’s relationships with clinical commissioning groups across England; including securing protected learning time on neuromuscular conditions in each region of England.
Coordinate and manage Muscular Dystrophy UK’s Services Development Committee neuromuscular centres of excellence audit.
Lead the Bridging the Gap project’s wheelchair services development policy and support NHS England QI’s National Wheelchair Leadership Alliance.
Lead and coordinate the development of the activities of family support group.
Coordinate, launch and disseminate emergency alert cards for people living with muscle-wasting conditions
Lead on the development and promotion of an online training module for physiotherapists; including the management of the module working group.
Oversee and plan the activities of the Bridging the Gap interns and volunteers;
Lead the review and development of the Bridging the Gap project’s transition work including the development of a neuromuscular transition toolkit.
Manage and lead neuromuscular support groups, engaging and supporting families and individuals living with muscle wasting conditions; working closely with neuromuscular health professionals and NHS commissioners in order to ensure the correct patient pathway is followed;

Main areas of responsibility:

1. Coordinate and develop the Bridging the Gap project’s relationships with Clinical Commissioning Groups across England; including securing protected learning time on neuromuscular conditions in each region of England;

Lead on all activities to develop working relationships and activities with CCGs across England;
Recruit and engage CCGs into the neuromuscular CCG engagement group;
Coordinate communication with all CCGs already engaged with the Bridging the Gap project;
Work to secure protected learning time on neuromuscular conditions at CCGs across England.
Encourage CCGs to promote use of the GP e-learning module and the physiotherapy module (when launched);

2.Coordinate the development of neuromuscular forums and working groups across three regions and identify and work to fill gaps in local neuromuscular services;

Establish relationships with NHS commissioners and service managers in order to share information from other parts of the UK, such as cost benefit data and models of neuromuscular service provision;
Lead on the development of the West Midlands and East Midlands regional forums and develop forums into regional neuromuscular networks;
Work closely with NHS England commissioners, Strategic Clinical Networks and regional hospital Trusts to drive forward the improvement of neuromuscular across all regions leading to increased consultant, physiotherapy and care advisor support;
Organise and manage information days for families in conjunction with neuromuscular health professionals;
To use MDUK data collection and monitoring systems to capture information on the database and conduct regular ongoing monitoring of, and reporting on, all services delivered;
To keep up to date with Information Service developments and ensure all parts of the Charity are advised accordingly.

3. Lead on the development and management of neuromuscular clinical networks and drive forward the development of neuromuscular services.

Drive forward the development of neuromuscular clinical networks and coordinate relevant parties in the recruitment of a chair person for the network;
Work alongside the Information Manager in the planning and organisation of network meetings including developing meeting packs, booking venues and securing attendees for meetings;
Work with Forum members to fill gaps in neuromuscular services and develop Work Plans to address these gaps;
Engage with Hospital Trusts to establish neuromuscular service provision; taking into account the neuromuscular service specification and documents such as the NICE accredited Duchenne standards of care;
Drive forward neuromuscular services across the region with new neuromuscular roles secured and increased numbers of outreach clinics in Kent and Sussex.

4. Oversee the Bridging the Gap project upskilling work stream by organising neuromuscular training events for health professional across England to ensure knowledge for neuromuscular conditions and their management is improved.

Lead all regional conferences for local health professionals highlighting the project; signposting to local specialist services; including event management and public speaking;
Ensure health professionals who attend upskilling events are recorded and added to charity databases;
Lead on the maintenance of strong working relationships with health professionals who attend events by writing and disseminating regular e-communications on the charity’s support and activities;

5.Coordinate and manage Muscular Dystrophy UK’s Services Development Committee neuromuscular centres of excellence audit;

Develop questions for 2015 national audit of neuromuscular services;
Help recruit a new chairman members of the audit panel;
Work alongside the chairman of the audit panel to decide the designation criteria for a neuromuscular centre of excellence;
Coordinate the promotion and management written audit questions and identify and develop secondary methods of service assessments through site visits/ patient panels;
Lead on the development of materials that recognise and promote neuromuscular centres of excellence.

6. Lead the Bridging the Gap project’s wheelchair services development policy and support NHS England QI’s National Wheelchair Leadership Alliance

Work with NWLA representative to influence the Alliance to adopt MD UK policy on improvements to wheelchair services for people with muscle-wasting conditions;
Support the NWLA representative with resources and information based on the experiences advice of families living with muscle-wasting conditions and neuromuscular expert health professionals;

7.Lead and coordinate the development of the activities of condition specific family support group;

Work alongside volunteers to organise regular OPMD support group events;
Write and disseminate OPMD e-communications to all families affected by the condition;
Create a working group to develop and disseminate an OPMD alert card.

8.Coordinate, launch and disseminate alert card for congenital muscular dystrophy;

Develop working groups to research and create content for alert card
Coordinate health professionals and people affected by muscle wasting conditions to ensure alert card is delivered to deadlines
Liaise with the design team on the design and print of the card
Lead on the promotion and dissemination of the card through social media and e-communications

9.Lead on the development and promotion of an online training module for physiotherapists; including the management of the module working group;

Work with neuromuscular physiotherapists and the University of Kingston on the development of an online course for community physiotherapists;
Work with physios to develop content for both paediatric and adult physios;
Ensure project runs to time and the module is launched in summer 2015;

10.Oversee and plan the activities of the Bridging the Gap interns and volunteers;

Recruit and manage all interns involved in the BTG project;
Plan and oversee intern activity, receiving an update on activity at the end of each working day;
Liaise with volunteer accreditation organisations to secure volunteer accreditation centre status for Muscular Dystrophy UK and ensure all key volunteers have access to accreditation for their involvement in the BTG project.

11.Lead the review and development of the Bridging the Gap project’s transition work including the development of a neuromuscular transition toolkit.

Review and update the charity’s transition guidelines working alongside the Information Manager;
Research transition toolkits being developed by other organisations and develop something that is tailored to the needs of young people with muscle-wasting conditions;
Promote transition toolkit throughout MDUK networks, both online and at events;
Oversee transition work for the Bridging the Gap project

12.Manage and lead local ‘Muscle Groups’, and similar support groups, engaging and supporting families and individuals living with muscle wasting conditions; working closely with neuromuscular health professionals and NHS commissioners in order to ensure the correct patient pathway is followed;

Manage and lead local ‘Muscle Groups’ and advise individuals and families affected by muscle wasting conditions on available services;

Other:

To behave in accordance with the Charity’s values at all times.
To prepare progress reports for line manager and others as agreed.
To attend monthly supervision sessions, team and project meetings as required.
To undertake any other such tasks as requested by the line manager.

Education

Good standard of Education /

Essential

Able to offer appropriate emotional support to adults and children

Desirable

Details

Hours – 35 per week
Holidays – 25 days pro rata

Evening and weekend activities involved – time off in lieu to be taken