Written evidence submitted by Neurological Alliance (ICS0047)
About the Neurological Alliance
The Neurological Alliance is a coalition of more than 80 organisations working together to transform quality of life for people affected by neurological conditions in England.
A neurological condition is any condition that affects the brain, spine and/or nerves.
There are over 600 known neurological conditions ranging from comparatively common conditions such as migraine and epilepsy to rare conditions such as the ataxias and Guillain-Barre syndrome.
1 in 6 of us live with a neurological condition, and many more are impacted as families, friends and carers.
Neurological conditions can be sudden, fluctuating, progressive and/or lifelong and have a range of different causes including genetic factors, traumatic injury and infection, although the causes of some neurological conditions are still not well understood. Some conditions are terminal and/or life-threatening.
Summary of response
This response highlights the need to ensure that the move towards Integrated Care Systems does not exacerbate unwarranted variation in access to or quality of services for people with neurological conditions. It also makes recommendations and highlights best practice examples around how ICSs could deliver joined up health and care services to best meet the needs of people with neurological conditions.
There is a specific focus on the following themes, supported by case study examples where applicable:
● Recommendations to prevent unwarranted variation and address health inequalities in neuroscience services
● The importance of co-production, co-design and involvement of people affected by neurological conditions and the VSCE
● The need to clarify multi-ICB working arrangements
● Improvements to data and evidence
● The centrality of service specifications, optimum pathways, clinical policies and Clinical Reference Group (CRG)
● The need for a Neuro Taskforce to provide political leadership and coordination
We would like to thank the Committee for the opportunity to submit to this important inquiry.
Our core recommendations
As set out in the recent NHS England and NHS Improvement “Roadmap for integrating specialised services within Integrated Care Systems”, responsibility for the commissioning, planning and leadership of many key services for people with neurological conditions will be delegated to Integrated Care Boards (ICBs) from April 2023.
The focus of Integrated Care Systems (ICSs) on health inequalities, collaboration, integration and population represents an important opportunity for improvements to care. However, without clear national standards and outcomes, strong data and insight and robust mechanisms to support patient and clinical leadership, we are concerned that this shift in responsibility could exacerbate existing unwarranted variation in services.
Significant regional variation in the structure and delivery of care exists across England. The recent Getting it Right First Time (GIRFT) in Neurology report, for example, found marked variation in access to specialist nurses between sites. For some people, regular treatments, such as disease modifying treatments (DMTs) for multiple sclerosis (MS) or botulinum toxin for dystonia, were available at their local hospital while in other areas these were only available at specialist neuroscience centres necessitating significant travel. In some areas clinics for common disorders such as epilepsy, MS and Parkinson’s were available at local hospitals, in others only at neuroscience centres.
Similar variation is also evident in relation to experience of treatment and care reported through My Neuro Survey. More than 8,500 adults, children and young people affected by a neurological condition responded to the survey across the UK. More than a third (36%) of respondents reported not being signposted or referred to support for their mental wellbeing in the last three years despite feeling that such support would be beneficial. Those living in areas of higher deprivation were more likely to report experiencing delays to their care. Women were more likely than men to report waiting longer before being diagnosed by a specialist.
With such variation in mind, our recent ‘Together for the 1 in 6’ policy report set out a series of recommendations which we believe would support a permissive framework for ICS' and help to address inequalities in care:
1. Every Integrated Care Board (ICB) works with the neurological community in their area to map current service provision for people affected by neurological conditions and set out plans to address shortcomings in care.
2. Every ICB has a clinical and patient lead for services for people affected by neurological conditions in their area.
3. Every Integrated Care Partnership (ICP) includes people affected by neurological conditions and/or a representative from the neurological VSCE sector.
4. Trusts, provider collaboratives and ICBs work together to implement common features of neuroscience pathways, including named care coordinators, access to mental wellbeing support and timely access to specialists, access to clinical research alongside other best practice recommendations included in:
○ National Neurosciences Advisory Group (NNAG) and neuroscience transformation programme optimum clinical pathways
○ NHS RightCare Toolkits & Pathways on progressive neurological conditions, headache and migraine and epilepsy
○ Relevant NICE Guidance and Quality Standards
5. ICBs and NHS Trusts work with the voluntary sector and local people to understand local need and implement coordinated and integrated care for people affected by neurological conditions.
We encourage the Committee to engage with and support these recommendations as part of this inquiry.
The importance of co-production, co-design and involvement of people affected by neurological conditions and the VSCE
Involving people affected by neurological conditions in key ICS bodies, boards and forums is key to delivering effective and efficient services, as well as meeting our shared goal of personalised care.
We strongly believe organisations within and between ICS’ should engage in strategic co-production wherever it is possible and appropriate to do so - this is a way of working at a strategic level that enables decisions to be made with people with lived experience to influence policy, service design, delivery, evaluation and resource allocation.
People affected by neurological conditions involved in service development and delivery must be supported to undertake their role, are clear on the expectations of it and able to tap into the insight and experiences of a wide range of neurological conditions.
In addition, every effort must be made to listen and engage with as diverse a range of people as possible. In particular, under-represented groups, such as those living with rare neurological conditions, LGBTQIA+ groups and people of colour must be actively encouraged and supported to take part in service improvement initiatives.
The Health and Care Act 2022 was a missed opportunity to increase patient voice and patient involvement. Previous requirements on Clinical Commissioning Groups (CCGs) to involve patients in decision-making were transferred to ICSs in the Act. However, with experiences from our member organisations supporting people with neurological conditions to campaign to improve services in their local area, we know these requirements are too often ignored.
We are supportive of calls made by National Voices in their submission to the Health and Social Care Select Committee inquiry into the Health and Care White Paper, which proposes:
● A clear duty to collaborate with people, communities and their organisations - increasing accountability, transparency and engagement
● All ICSs should be obliged to design and report on mechanisms that enable engagement at System level
● That these changes must also be reflected at all ICS levels - System (ICB and ICP), Place and Neighbourhood.
We urge the Committee to support these recommendations and encourage the Government, in collaboration with the VCSE sector, to make the necessary regulatory and/or legislative changes to strengthen ICS responsibilities to meaningfully engage with the VCSE sector and people with lived experience at all levels of Integrated Care Systems - System, Place and Neighbourhood.
Case study: The South London and Survey Neuroscience Network - Neuro Voices
The South West London Neurosciences Network is a well-established network with a track record of working collaboratively across organisations and successfully transforming neurological services across the region. It is an ICS-based clinical network with multiprofessional leadership and membership from community, primary, secondary and tertiary care. The network wanted to ensure that patient views, lived experience and expertise were at the centre of all their work.
The network secured funding from the SW London ICS to co-design a public and patient involvement (PPI) strategy which reflects the diversity and complexity of the needs of people living with neurological conditions and their families, working in partnership with neurosciences staff at all levels in the system.
“It is vitally important for us as people with neurological conditions and people caring for those with neurological conditions are working hand in hand with people that run neurology services in our local area. We have seen so many times that services have been changed with the intention of improving them with little or no involvement from people that use those services and time and time again we find that the change is not what the people that use the services want or need. Through the NeuroVoices project we have all come together to decide how we would like to work together and solve problems together by creating a shared vision, mission and priorities for the next 2 years. We have had buy in from the highest points of the ICS which have meant that we all feel that we have the power to achieve what we’re setting out to achieve” Scott Ballard-Ridley, Neuro Voices Network lead
They hope that the South West London Neuro Voices Network will act as a model and blueprint for patient engagement across the system. 80 people affected by neurological conditions are regularly involved in the network, with opportunities to expand this as the network develops.
By jointly harnessing the expertise of patients and staff into their transformation plans, the following benefits have been realised:
● better and more appropriate targeting of resources across the whole pathway
● a clearer system focus on patient experience and outcomes rather than just routinely collected activity metrics
● understanding of barriers to access, thus helping us address health inequalities
● enabling more effective self-management programmes
The need to clarify multi-ICB working arrangements
We are particularly concerned that services for low prevalence or rare neurological conditions, and/or where services are scarce (such as services for Functional Neurological Disorder) are unlikely to be a priority for ICBs, and are therefore particularly vulnerable.
In parallel, arrangements for multi-ICB working, contracting and financial flows are yet to be determined – multi-ICB working will be of critical importance for these services and ensuring access to the right specialist expertise.
We welcome NHS England and NHS Improvement’s recommendation to ICBs that they should consider the set of services that have been deemed to be both suitable and ready for greater ICB leadership from April 2023 as they develop their strategic multi-year plans in 2022/23, including what multi-ICB footprints will be required to effectively plan and commission these services when delegated. We do however need urgent clarity and greater detail around the expectations of multi-ICB working including in neurosciences.
Improvements to data and evidence
We welcome the population health management approach adopted in many ICS’. This must be based upon good quality and integrated data, from which systems can plan appropriate services for their region, as well as foster collaboration between sectors.
Importantly, data should be gathered from a varied range of sources (for example, patient experience, service outcome and activities) to allow for the greatest insight possible to be derived. Optimal service design requires detailed activity data for all neurological conditions, not limited just to the volume of activity but also describing activity in diagnostic terms. As well as informing service design, diagnostic coding will support work on clinical outcomes.
However, good quality NHS data simply does not exist for many neurological conditions, particularly rarer conditions – the impact of this was laid bare during COVID-19, where many people with neurological conditions were not made aware of their vulnerability to the virus or the support available to them due to inadequacies in primary and secondary care datasets.
Agreed outcome measures, implemented and used consistently across the system, are critical in addressing health inequalities, unwarranted variation and improvement of services for people with neurological conditions. We urge the Committee to support our calls for NHS England and NHS Improvement to adopt and mandate such measures without delay.
Importantly, the collection of outcome data must be simple and easily recorded digitally through normal clinical practice to ensure buy-in from clinicians and patients. This must be underpinned by a robust, standardised system of neurology outpatient coding.
Finally, a multidimensional approach to an expectation framework, considering the needs of patients, clinicians, larger workforce, trusts and ICSs will allow assessment of what is needed across the system to improve patient outcomes and experiences. As supported by recommendations made in The National Neuroscience Advisory Group report ‘Neurology Outcomes Discussion September 2021’ based on an event which brought together healthcare professionals, patient organisations, commissioners and leaders from across the speciality.
Centrality of service specifications, optimum pathways, clinical policies and Clinical Reference Group (CRG)
The NHSE/I neuroscience transformation programme, which will set out future commissioning models for neurology and neurosurgery in greater detail, is still in progress and will feed into revised service specifications for neuroscience. A number of key service specifications have been in development for years, including the neuropsychiatry service specification and neuroscience service specification.
It is imperative these are finalised ahead of commissioning responsibilities being delegated. The neuroscience transformation programme also must continue at pace, with National Clinical Directors swiftly appointed to support its progress.
A range of optimum pathways and guidance to improve care have been developed, and are well placed to support ICBs and ICPs to improve local population health.
Case study: Implementing integrated care for people affected by epilepsy
The Step Together Benchmarking Toolkit has been developed by Epilepsy Action and led by Prof Rohit Shankar (with funding from UCB). The Step Together guidance was created in collaboration with people with epilepsy and learning disabilities, and their carers and families. Clinicians and other healthcare professionals were also consulted on the guidance, and created an ideal service model for a highly integrated service.
This toolkit allows services to self-assess their support for people with learning disabilities and epilepsy. It has been developed based on the Step Together guidance (Nov 2020) and covers commissioning, access to services, integration with social care, joint working between learning disability and neurology services, information sharing, workforce competencies, participation, choice, and transition to adult services.
The toolkit asks a series of questions to assess each of these key areas, and can show the strengths and weaknesses both of individual services and of service provision across geographical areas. This ensures all aspects of service quality are considered and can provide assurance that the guidance has been implemented and services are meeting the needs of this vulnerable and high-risk group. It can also be used by commissioners to identify gaps and plan services.
The toolkit is currently in the final round of testing with launch planned for September 2022. Phase 1 of the rollout will happen within the 11 Midlands ICBs, and phase 2 will be UK-wide.
Case study: Using MS optimum pathways to support service improvement within an ICS
A virtual workshop was held in November 2020 attended by 47 health care staff, commissioners, patient groups, and people living with multiple sclerosis (MS)/ Neuro conditions.
Information gained from the workshop along with Hospital Episode Statistics (HES) data and the National Neuroscience Advisory Group (NNAG) Optimum Pathway for MS were used to better understand how to identify and understand potential gaps in the current pathway and opportunities to address them.
A range of evidence, data and input (including from people living with conditions) is vital to support effective service improvement. There is also a need for all key stakeholders, such as those who attended the workshop, to be provided with the time and resource to discuss evidence and propose and develop service improvement approaches.
The workshop resulted in the formulation of a report and subsequent action plan outlined in more detail below. There were also notable parallels between issues highlighted in the data and those raised by people affected by MS, including psychological support and bladder management.
Similarly, this approach provided a better understanding of how neurological service improvement priorities aligned with the wider population health management issues being prioritised by the ICS.
Summary of report and action plan:
Services at acute secondary care level:
● Management of DMT’s
● Service offered and experience at point of diagnosis
● Bladder and Bowel management – Pilot of the use of a new bladder and bowel pathway in Liverpool.
● Pain management – Linking in with the pain management pathway which is a priority area of work in the Cheshire and Mersey Neuro Science Program Board, supported by the ICS.
Community / Primary Care Service and Support (Focus of discussion for this area of work is neurological conditions and not MS only)
● Emotional and Psychological support pathway – Accepted as a priority area of development at the Neuro Science Program Board. Integrated Care Board have recently agreed a small amount of resource for this development, based on a paper presented by a lead clinical psychologist
● Access to Therapies – A working group held a workshop with a range of stakeholders in November 2021 including people living with neuro conditions. Currently feeding into the Cheshire and Mersey Neuro Rehab review.
● Work to ensure the Integrated Neurology Nursing team are linked in with and continue to develop support in this area of delivery.
Coordination between services primary, secondary care, acute and the voluntary and community sector. (Again focus of discussion on this action is neurological conditions)
● Developing stronger links between work on Neuro conditions and primary care / PCN’s. This is still in development although primary care reps now sit on the Neuroscience Program Board.
● Developing a coordinated offer from the voluntary and community sector that health care professionals can access and use
Effective communication on services available / service simplification (Focus of discussion is neurological conditions)
● Production of the Nurse advice line leaflet following consultation with people who use the services
● Focus group held with people living with MS / neuro conditions around information at the point of diagnosis and immediately after
● Acknowledged the need to engage and develop the digital offer of appointments etc.
Engagement with People living with neuro conditions
● Supported by the Cheshire and Mersey Neuro Alliance
● Sessions held with a range of people living with conditions on the new Walton Centre Trust Strategy 2022 to 2025, with representatives from Cheshire and Mersey and North Wales
● Priority area of work in strategy to develop comms and engagement. People living with conditions will be involved in the strategy review / evaluation
● Three people living with conditions are now members of the Neuro Science Program Board (part of terms of reference).
Need for a Neuro Taskforce to provide political leadership and coordination
There are currently a variety of initiatives that seek to address shortcomings in treatment, care and support for people affected by neurological conditions. These include the planned UK wide strategy on Acquired Brain Injury and other neurological conditions, the NHS England and NHS Improvement (NHSE/I) neuroscience transformation programme and the Getting It Right First Time (GIRFT) adult neurology, stroke and neurosurgery reports.
At present there is insufficient coordination of such initiatives, little leadership or prioritisation at the highest levels of Government to support their implementation and very limited opportunities to share learning across systems. Responses to My Neuro Survey highlighted many common challenges in improving access to treatment, care and support for the 1 in 6 people in the UK who live with a neurological condition.
Together with Neurological Alliances across the UK, over 100 member organisations and over 12,000 people - we’re calling for Governments across the UK to establish a Neuro Taskforce.
The Taskforce would provide a framework to support greater collaboration and sharing of best practice in the approaches taken to tackle these common problems. It would build on similar policy approaches in health and care, such as the recent Rare Disease Framework and associated implementation plans. Fundamentally, and most importantly, it would help to show that governments across the UK are listening to people affected by neurological conditions.
Giving neuroscience services and people with neurological conditions the prioritisation they deserve would help to ensure that all ICSs deliver the right care and support at the right time for the 1 in 6 of us with a neurological condition. We urge the Committee to support our calls for a Neuro Taskforce and the much-needed improvements in access to and quality of services it would help to deliver for people affected by neurological conditions.
Aug 2022