National Neuro Advisory Group (NNAG)

Purpose

The National Neurosciences Advisory Group (NNAG) was established in 2016 as a new form of collaborative leadership for neurosciences in England. It was set up following the discontinuation of the National Clinical Director for Neurology.

 

The overall purpose of NNAG is to improve outcomes for patients living with neurological conditions. This is done by providing a forum for different organisations across the health sector, such as NHS England, Public Health England, clinicians, academics and patient voice organisations, to come together to deliver the following aims:

 

  1. Ensure alignment across all current national neuroscience initiatives
  2. Trouble shoot emerging issues and problems in neuroscience service delivery that fall out of the scope of the Neurosciences Clinical Reference Group
  3. Develop and coordinate a national programme of services improvement, which will lead to improved quality of care and patient outcomes.

 

NNAG works closely with national programmes such as Getting It Right First Time and NHS RightCare providing expert advice as well as sharing learning.

 

As NNAG is trying to improve services for all patients with a neurological condition across the whole patient pathway it is working closely with the Neurosciences Clinical Reference Group, but goes beyond its specialised remit.

 

 

The NNAG is not a decision-making body but provides advice and influence through its membership.

 

Find NNAG’s logic model here.

 

Membership

A full list of NNAG members and their terms of office can be read in the terms of reference.

 

Patient group members of NNAG are elected by patient voice organisations by a vote held at an NNAG patient groups meeting. All other members of NNAG are invited based on holding a senior role in their organisation and having a high level of influence across Neurosciences. NNAG members will:

 

  • Attend all scheduled Advisory Group meetings, and if necessary nominate a proxy.
  • Where members identify interdependencies to the programme they are responsible for, act as the conduit to raise these.
  • Identify potential strategic and directional issues between projects and work to resolve these.
  • Communicate outcomes of the meeting with their respective organisations and networks.
  • Contribute to setting the strategic direction of NNAG’s programme of activities, monitor the workplan and hold NNAG to account.

 

NNAG is jointly Chaired by Professor Adrian Williams, who also chairs the Neurosciences Clinical Reference Group, and Sarah Vibert, Chief Executive of The Neurological Alliance.

 

Programme management support for NNAG is currently being provided via the Neurological Alliance, funded by a range of neurological charities, until a more long-term sustainable solution can be found. The programme manager is responsible for co-ordination of the different workstreams, NNAG meetings and agendas, and the production of regular updates on progress and upcoming events. The programme management is currently being provided by the NHS Midlands and Lancashire Support Unit.

 

NNAG sub groups

The Neurology Intelligence Collaborative

The Neurology Intelligence Collaborative (NIC) is the data subgroup of NNAG.  To read more about their work see our Neurology Intelligence Collaborative webpage.

 

The NNAG Industry Forum

The NNAG Industry Forum provides a channel between NNAG and the life science industry to provide an industry perspective on key issues affecting neurological services and to identify opportunities to improve outcomes for patients through innovative practice and partnerships.

 

It aims to support the development of a health service that is ready and capable to rapidly adopt and diffuse licensed and cost-effective medicines and medical devices for the benefit of patients, to drive improved patient outcomes and improved system efficiencies where appropriate, and to reduce unwarranted variation in usage of new technologies.

 

The group undertakes work on life sciences specific topics as mutually agreed upon by the industry members and NNAG Co-Chairs, and works collaboratively with other stakeholders as needed on cross-cutting issues.

 

NNAG Patient Group Forum

The NNAG patient group’s purpose is to provide the patient, service users and public perspective on NNAG’s work. It does this by bringing together representatives from the voluntary and community sector to comment on the development, planning, implementation and evaluation of work undertaken by NNAG.

 

It ensures that the voluntary and community sector perspective is expressed and used to constructively challenge, influence and help develop NNAG’s strategies. It also promotes co-production in respect of the NNAG work programmes.

 

The patient group forum also elects four representatives for membership of the NNAG. Patient Organisation representatives  sit on NNAG for a term of two years.

 

You can read theNNAG patient group’s terms of reference here.

 

NNAG condition specific work streams

During 2018 NNAG has arranged a series of condition specific away days. The aim of these days has been to bring together clinicians, patient organisations and commissioners to articulate what good looks like for specific patient cohorts and to identify the key challenges to delivering this. The discussions at the away days have identified a number of actions and recommendations which NNAG is looking to take forward in 2019.

 

Neuromuscular conditions

The first away day held was the neuromuscular conditions workshop on 23 February 2018, the write up from the day can be read here.

 

Key actions being taken forward from the day are:

 

  • To develop the quality and financial case for Neuromuscular Complex Care Centres – this is being developed through plans to establish a centre in Newcastle, with support from Muscular Dystrophy UK.
  • To review the process for prescribing  intravenous immunoglobulin (IVIg), addressing concerns around; differences in access, discrepancies in approval, variable post usage queries and differences in long term monitoring, this is being looked at by the joint Neuro-Immunotherapy subgroup of the Neurosciences Clinical Reference Group.
  • Defining and improving care planning for patients with neurological conditions – The Neurological Alliance and the MS Society are setting up a work group to look at this.
  • Ensuring consistency in the commissioning of Non-invasive ventilation (NIV) and improving data collection in relation to outcome measures for patients on NIV.
  • Development of a joint Neurosciences and Paediatric Clinical Reference Group – telephone calls to take place bi-monthly.

 

Neurorehabilitation

The second away day was organised in conjunction with the Rehabilitation and Disability Clinical Reference Group and held on 13 March 2018. The write up from the day can be read here.

 

Key actions identified on the day were:

 

  • Commission Getting it Right First Time (GIRFT) to undertake an analysis of rehabilitation services to produce a national map of the services available and variation in outcomes.
  • Undertake a gap analysis to identify key areas for intervention.
  • Form a national rehabilitation advisory group drawing together relevant parties to create a national voice for rehabilitation services.
  • Develop a rehabilitation specification demonstrating clear care pathways and the resources required to deliver services.
  • Review workforce models across all professional groups identifying how there can be increased awareness of rehabilitation throughout training programmes and review roles and responsibilities including opportunities for advanced practice.

 

As a result of this event GIRFT and NHS England will be undertaking a review of neurorehab services, including both specialist and Clinical Commissioning Group funded services. More information to follow.

 

Parkinson’s, Dementia and Psychiatry

The third away day, held on 19 July 2018, focused on what good care looks like for people affected by Parkinson’s, dementia and psychiatric conditions. The write up from the day can be read here.

 

Key actions being taken forward from the day are:

 

  • Parkinson’s UK are offering support in campaigning for service improvement and to teams or organisations looking to develop business cases to enable service changes.
  • Parkinson’s UK are setting up a mental health hub as part of their excellence network.

 

For more information please contact the Parkinson’s Excellence Network.

 

Epilepsy

The fourth away day of the year focused on epilepsy and was held on 11 October. This away day focused on the data available and key issues for patients with epilepsy. The summary from the day can be read here.

 

Actions agreed following the day were:

 

  • RightCare to develop an optimal pathway for epilepsy based on the day’s discussions and further input from attendees/stakeholders. They are looking to pull together a multidisciplinary group to ensure that everyone’s views are heard.
  • NNAG will be looking to set up an epilepsy subgroup to take some of the actions and improvements identified forward.

 

For more information on how to be involved in this please get in contact.

 

Recent events

Clinical Leaders Away Day

The NNAG Clinical Leaders Day was held in Birmingham on 5 December 2018. A full write up from the event is available here.

 

Plans for 2019

NNAG is currently exploring projects on mental health and on care planning for 2019. If you are interested in getting involved in either of these projects please get in contact.

 

Further information

For more information on any aspect of NNAG’s work, please contact Hannah Verghese (NNAG programme management).