Identifying the Themes for Action and Priority in the Neurological Conditions Action Plan - Review of existing information

The Background to this Project

The ALLIANCE’S Neurological programme is leading a programme of work to develop recommendations and priorities for the future of neurological services. These will be presented to the National Advisory Committee on Neurological Conditions (NACNC) who are supporting the development of a National Action Plan for Neurological Conditions. In collaboration with the Neurological Alliance of Scotland, this project is seeking to understand the experiences of people with neurological conditions accessing services. To inform a national action plan, this project needs to engage nationally and hear a wide range of voices. In order to do this, a mixed methods approach is being taken in order to get a breadth and depth of views. A review of existing information about experiences accessing neurological services will be undertaken, focus groups will be held and a survey will be done.

Purpose of this report

The aim of this report is to review existing information about experiences accessing neurological services. It is recognised that third sector organisations that work to represent and support the neurological conditions community have well developed and effective engagement and involvement networks. Therefore, in order for this project to hear from a range of voices it is vital that these organisations play a part.

This report represents one of three ways we are capturing voices and experience that aims to triangulate prescient priorities for the neurological community. It contains information gathered from engagement events undertaken by third sector organisations; the themes and discussion in this report represent those from the engagement reports analysed. This is not an exhaustive list of key themes important to people with neurological conditions. Focus group work and a survey will compliment this report, fill any gaps and a final report will be produced covering all of the voices and views gathered during this project.

Methodology

A common theme that has been emerging from the work undertaken within the Our Voice framework, and which the framework aims to mitigate, is that of ‘consultation fatigue’. Engagement and involvement is beginning to become a core part of any piece of work undertaken by organisations, local authorities and government; resulting in people feeling over consulted and often with little feedback on the impact of their views. In order to avoid adding to consultation fatigue there is a push to do more with the information that is already there. This project is an example of this.

Rather than launching several engagement events to gather views of people living with neurological conditions, a desk based scoping review was done of existing information including Care Opinion and reports from engagement events carried out by members of the Neurological Alliance of Scotland (NAofS).[1]This approach was deemed appropriate due to the broad remit of the project – to gather experiences and suggest recommendations for improving services.

An open call for reports was put out through the NAofS for its members to send documents. A total of 12 reports were analysed; 7 were specific to a particular neurological condition; 4 focused on the whole neurological condition community; and 1 had a focus on genetic conditions with specific sections for neurological conditions.An interactive resource from Care Opinion was produced that included all stories submitted since 2015 that were tagged as ‘neurological’.[2] This allowed the stories to be grouped by theme and whether they were positive or negative.

Broad themes emerged quickly when reviewing the literature. This laid the foundation for the thematic coding and allowed for a more detailed interrogation of the findings. Information was analysed on the basis of relevance to the wider neurological community and proximity to personal experience. Six of the reports were from condition specific organisations but the person centred nature of the engagement resulted in the findings from them being applicable across the neurological community as people talked about journeys and personal anxieties rather than specific treatments.

Along with these broad themes that address systemic challenges people face in accessing the services that they need, many of the reports begun to suggest how people would like the system to respond to these challenges. Therefore, with each ‘emergent theme’, this report captures ‘aspirations’ for improved neurological services in the engagement reports for how the system could change to suit their needs and improve their care.

Emergent Themes

Diagnosis and Care Pathways

All of the reports and a significant number of stories on Care Opinion made reference to issues around getting a diagnosis and the lack of clear care pathways once a diagnosis has been made. People speak of having to wait up to six months before receiving a diagnosis; having been passed across different services before being able to speak with a neurologist. Part of the reason for this is a lack of understanding of neurological conditions – meaning that clinicians look for other possibilities before starting to consider that issues may be caused by a neurological condition.

Even when a diagnosis is made people report a lack of clarity around a care pathway. Currently there is no care pathway established for people with neurological conditions. In the context of having a wide multi-disciplinary team supporting complex and dynamic needs, a lack of clear care planning can lead to poor communication between professionals and result in a person not getting the support they need[3].

For some neurological conditions, the specialist services are not yet in place to warrant the development of a care pathway post-diagnosis. However, an aspirational action plan will explore how foundations for care pathways can be laid in areas where services are still developing. This issue intersects with many of the below themes, and also the underlying theme of person centred care. Where specialist services are lacking, care planning should still occur through conversations about how available services, including community support and third sector services, can be utilised to achieve personal outcomes.

Aspirations in this area:

  • Co-production of clear pathways for neurological conditions

Care Coordination

Neurological conditions are highly complex and therefore require a range of people and specialties to work together to maximise treatment. However, the systems for communications between healthcare professionals are identified as an area for improvement. Many people have reported having to waste a lot of time speaking with different specialists as they do not speak to each other. Rare Diseases UK have produced a report with case studies on the significant benefits of having dedicated care coordinators.[4]

Having a dedicated care coordinator can also improve outcomes in older age as secondary ageing that is a result of living with a neurological condition can be ignored at service level. Consequently, people with neurological conditions receive the support needed with issues linked with primary ageing, but the additional support needs of ageing with a neurological condition are not regularly met.[5] Therefore, quality care coordination can support people to access the correct services required as conditions develop into older age.

Aspirations in this area:

  • Better care coordination between healthcare professionals
  • Increasing the provision of named persons to act as care coordinators for people with neurological conditions

Carers

The role of carers is vital to ensuring that people with neurological conditions are able to reach their full potential and live the lives they want to. This includes both paid and unpaid carers – and both are a significant priority across the literature.

Regarding paid carers there is concern about staff shortages across the whole of social care. In addition to this, due to the specialist training required to support someone with a neurological conditions (which can include PEG feeding and stoma care), staff shortage issues are amplified. Staff shortages across social care also impact on continuity of care for people with neurological conditions. As carers are stretched to capacity it becomes harder to ensure that a person is seen by the same carer. Continuity is vital for building up trusting relationships and maintaining dignity and control.

Unpaid carers feel many of the same frustrations as people with neurological conditions; lack of community support, poor communication and uncertain care pathways. On top of this, many carers feel that there is not enough sufficiently equipped respite services.[6] Furthermore, many struggle to navigate the complex landscape of benefits, grants and services that are available to both them and the person they care for.[7]

Aspirations in this area:

  • Support for care organisations to train care staff to properly support people with neurological conditions
  • Increase respite services for people with neurological conditions
  • Clearer information and support to navigate the range of benefits and support available to carers

Communication

Poor communication is the leading complaint about neurological services on Care Opinion and is raised across all of the reports submitted.Caring conversations that reflect apartners in care approach are essential to good quality care. For people with neurological conditions, interpersonal communication is seen as lacking. The reports studied highlight issues around respect, with people feeling talked down to and patronised when being told about their health. In their response to the Health and Sport Committee call for views on clinical governance, Action for M.E. note that there is ‘a lack of respect shown to the patient’s experience and knowledge of their own condition.’[8]

Alongside interpersonal communication, systemic communication is also a big issue for people accessing neurological services. People have found that after diagnosis and being put on a treatment waiting list, they receive little or no further communication. Not only are people left with no information on how to manage with a newly diagnosed condition but people find it difficult to get updates on their waiting times. 52% of stories on Care Opinion that deal with ‘Communication’ mention significant issues in getting information about waiting times. One story talks of not being informed about changing waiting times until they contacted the hospital directly:

After hearing nothing from the hospital close to the 18 week waiting time, I called them, only to be told the waiting time was 28-30 weeks. At week 25, I called again to see if the waiting time had reduced. I was informed the waiting time was 27 weeks. I have also written a letter of complaint at the beginning of October to ask for an explanation as to why the 18 week waiting time has not been met with no communication from the health board. I used the email address you ask patients to use. I have still not heard anything from either the hospital regarding my appointment or from the health board regarding my complaint around lack of communication.[9]

Aspirations in this area:

  • Develop a framework for clear lines of communication – via different means – between people and health professionals
  • Include clear points at which information needs to be given out
  • Embedding shared decision making with people at the centre with a focus on supporting caring conversations[10]

Specialists and education

There are concerns around the capacity of health professionals to deal with complex neurological conditions. With the varied and fluctuating symptoms of most neurological conditions it is common for people to have a wide range of health professionals supporting them, many of whom won’t have specialist knowledge of neurological conditions.

This is seen as a gap across several of the papers analysed for this work. There was a particular mention of the negative impact that physiotherapy can have if the person delivering it isn’t aware of the impact of fatigue.[11]GPs have also been highlighted as a group needing more knowledge of neurological conditions as people felt that their GPs weren’t able to support them adequately with the varied and fluctuating symptoms of neurological conditions. However, there is currently no consensus or ‘curriculum’ around what this ‘specialist’ knowledge should involve.

Aspirations in this area:

  • More awareness of neurological conditions across all therapy providers
  • Development of training for GPs and other health professionals on the impact of neurological conditions
  • Facilitating the sharing of knowledge where a person is the expert in their condition

Community Neurology Services

There is concern across the literature that neurological services are getting left behind as compared with the changes occurring across other services.There is no requirement for the integration of neurological services – with very few IJBs opting to include neurological service in the integrated budget which centres neurology and support for those with neurological conditions within a health setting rather than the community.[12]A result of this is likely to be insufficient service provision and consequently people are less likely to be able to live independently and live the life they choose.

There have been improvements in access to neurologists in recent years. However, a survey of people with MS revealed that 80% of respondents still saw their neurologists in a hospital.[13] As well as increasing access to multidisciplinary teams and neurology specialists, there has to be consideration of where these interactions take place.

Aspirations in this area:

  • Increased community based services supporting people to live well, including services like specialist physiotherapy as well as third sector provision
  • Identifying the prevalence of people with neurological conditions within care homes and considering where home support packages maybe more suitable.
  • Implementing training programmes on neurological conditions for care home staff

Information and active self management support:

Linking with issues around knowledge and communication is the lack of information and the support to manage their wellbeing that is offered to people. People have referenced difficulties in finding information about different support groups or voluntary services that are available to support them. Similarly, the lack of information on advocacy, rights and access to grants and financial entitlements was raised as a significant issue for people with neurological conditions.

Linked to this is the value of peer support. People have emphasised the role that peer support can play in self managing neurological conditions. Peer support can help people with identifying new self management techniques, share information about services and also reduce the isolation that many people with neurological conditions feel. This can also help to address some of the social isolation that people reported. People with neurological conditions often experience reduced mobility or fatigue, which can make staying socially connected difficult.

Aspirations in this area:

  • Signposting embedded in GP practice communication
  • Developing/Improving directory of services[14]
  • Wider awareness/prevalence of peer support
  • Creation of information materials relating to rights and options particular to people with neurological conditions

Next steps

A number of focus groups are being held across Scotland to check out these themes and priorities for action. Following this a survey will be developed to understand more fully the issues and all of this work will inform and shape the coming action plan.

Appendix One

Reports/Documents used

Spotlight on Specialist Services: UK healthcare for people with M.E. - Action for M.E.

Action for M.E. submission to the Health and Sport Committee’s call for views on Clinical Governance - Action for M.E.

Rare Disease Care Coordination: Delivering Value, Improving Services - Genetic Alliance UK

The Neurological Involvement Network Event Report - Health and Social Care Alliance Scotland

Report on Hearing the Voice of People with Lived Experience to inform future considerations on Specialist Nursing and Support Services - Health and Social Care Alliance Scotland

‘Roon the Kitchen Table: Outcome of the consultation with families living with Huntington's Disease in Scotland - Scottish Huntington's Association

Back 'Roon the Kitchen Table: Outcome of the consultation with families living with Huntington's Disease in Scotland - Scottish Huntington's Association

Rewrite the Future: A report on progress in improving specialist care for people with neurological conditions in Scotland - Sue Ryder

False Allegation of Child Abuse in Cases of Childhood M.E. - The Young M.E. Sufferers Trust

Ageing with a lifelong condition: The experiences and perception of older people with cerebral palsy, Kevin Paterson and Nick Watson, Strathclyde Centre for Disability Research

My MS My Needs 2016: access to treatment and health care, Diane Redfern-Tofts, Laura Wallace and Ann McDougal, 2016

MS Treatment in Scotland – Is access still a lottery?, MS Society, 2016

Care Opinion Data -

1

[1] A full list of the reports used can be found in Appendix 1

[2]

[3] MS Treatment in Scotland – Is access still a lottery?; MS Society, p11

[4]Rare Disease Care Coordination: Delivering Value, Improving Services

[5]Ageing with a lifelong condition: The experiences and perception of older people with cerebral palsy, p17

[6]Many good respite services exist, Leuchie House provides fully supported respite services for people with neurological conditions. Such services must be recognised as essential in the suite of services available within neurology.

[7]The Carers (Scotland) Act 2016 outlines a requirement for local authorities to have an information service for carers, it is important that neurological services are aware of this resource and are equipped to signpost/refer people to it.

[8]Action for M.E. submission to the Health and Sport Committee’s call for views on Clinical Governance, p3

[9]

[10]Several models exist that support shared decision making – the House of Care model is one that is WHAT?! – these can be explored for relevance within neurological services