My apologies, Mark Isherwood. You must have been wondering what was happening there. My mistake. So, I'm calling Mark Isherwood to introduce the short debate. Mark Isherwood.

Diolch, Llywydd. I speak today as the chair of the cross-party group on neurological conditions. There are more than 250 recognised neurological conditions. In Wales, approximately 100,000 people are living with a neurological condition that has a significant impact on their lives.

From 2011 onwards, the Welsh Government published a number of health delivery plans. The neurological conditions delivery plan, or NCDP, was published in 2014. In 2019, people with neurological conditions, clinicians and charities raised concerns that the NCDP, which had been revised in 2017, had not yet resulted in the degree of change that should be expected. They questioned whether the implementation of the plan had been effective in ensuring that treatment and care sufficiently meets the needs of all people living with neurological conditions in Wales. Consequently, the cross-party group on neurological conditions took action to conduct a short inquiry. Its purpose was to gather evidence and to present both the health and social care committee and the Welsh Government with recommendations for action to improve the implementation of the current plan and deliver a long-term strategic approach to raising standards in treatment and services and support for people with neurological conditions in Wales.

Many of the organisations and individuals who submitted evidence to the inquiry focused on opportunities, concerns and challenges related to the way in which the plan has been implemented. Some felt that it's highly likely that the outcomes and performance measures in each chapter of the NCDP will be met by 2020. 

The Deputy Presiding Officer took the Chair.

The role of the neurological conditions implementation group, or NCIG, is clearly defined within the NCDP. However, when the NCDP was first introduced, there was little or no co-ordination across neurological services at an all-Wales level. Networks for conditions such as cancer, cardiac and renal services were well established by that stage, but this was not the case for neurological services. As a result, the task that NCIG faced was complex and difficult.

The majority of evidence that was submitted to the cross-party group's report with regard to progress in raising awareness under the NCDP related to activity rather than outcomes or impacts. Co-production activity between NCIG, third sector organisations and individuals with neurological conditions was welcomed. In particular, contributors cited the joint working between NCIG and the Wales Neurological Alliance to create a patient-reported experience measure, or PREM, as a positive step. Discrete educational activity was cited by NCIG as a positive. However, as the report states:

'Contributors questioned the extent to which the plan had enabled genuine coproduction and participation with people with neurological conditions and carers. They expressed disappointment with the lack of discernible progress in setting up a Neurological Conditions Service User Forum in every LHB. One third sector organisation told this inquiry "Neurological Service User Forums have not been established acros Wales as intended by the plan. It is not evident whether Health Boards or NCIG have drawn on feedback from service user forums".'

Although the report states that partnership working with

'Third sector involvement in NCIG was perceived as positive', it also states that 

'concerns were shared that third sector involvement generally is patchy, inconsistent and not equitable across Wales or by condition.'

The greatest success of the NCDP is that it's created a focus on the needs of people with neurological conditions in Wales. It has thrown a spotlight on the factors that have been missing in terms of strategic delivery of services for neurological conditions, for example, networks such as those that exist for cancer, cardiac and other conditions. Furthermore, it has provided an opportunity and structure for individuals and third sector organisations to share their concerns and poor experiences. As a result, it has allowed those involved in implementation to begin to take action to address unmet need and to find solutions to challenges.

The appointment of a clinical lead role for neurological conditions is welcomed. The clinical lead has begun defining the areas of required intervention and identifying clinical pathways underpinning clinical services and principles. However, the appointment was made relatively late in the implementation process and it only has one day per week of ring-fenced funding.

NCIG has worked hard to establish a baseline and is beginning to promote good practice and to marshal pragmatic improvement activity. However, it's vital that this group should continue to exist and be embedded more permanently in order to deliver a better network approach to promoting ongoing improvement and efficiency across Wales. There are so many challenges that need to be resolved. It is clear that this focus should be sustained.

Remaining challenges pertaining to the implementation of NCDP include maintaining the work of NCIG, for it would be extremely detrimental to lose the focus on service improvements and networked approach that they've introduced; funded posts for a clinical lead and a co-ordinator, emphasising the seriousness of intent for the delivery plan to effect real change; accountability for delivery—NCIG monitors the progress of the NCDP, but does not have a mandate to hold local health boards to account for critical elements of implementation like workforce development strategy; if this is indeed not the role of NCIG, it could be suggested that this accountability should be provided by another means in order to effectively incentivise service change.  

Communication about delivery to stakeholders and the wider public needs to be improved. Establishing a national communication platform is critically important, cascading information to the people who are actually on the ground. Key management data in terms of readmission rates, waiting times, length of stay in hospital and so on is collected and analysed at local health board level, but all-Wales data of this kind was not provided as evidence to this inquiry. Lack of management data related to the outcome indicators of the plan and the delivery of diagnosis, treatment, services and support for people with neurological conditions is a significant problem. It's impossible to track improvements over time without a properly resourced mechanism to gather and publish this kind of data.

The removal of the requirement for individual health boards to publish annual neurological delivery plans and annual reports has resulted in it being more difficult to consistently consider progress generally or at an individual health board level. Local health board integrated medium-term plans have not been effective at driving change on NCDP priorities. They often lack neurological-specific sections and any neurological service references can be dispersed under different IMTP sections. Patients and carers have not been genuinely given the opportunity to take part in service improvement. Financial restraints have had a negative impact on neurological services, access to treatment, services and support. This has increased travel time and costs for individuals with neurological conditions, which has a very negative physical, emotional and financial impact on people, and can result in them not accessing that treatment and care that they all need.

The cross-party group on neurological conditions urges Welsh Government to accept the recommendations and commit to taking the necessary actions identified in the report. These include ending the chronic underfunding of neurological services within investment in health and social care services to meet the needs of people in Wales, and creating a new neurological condition strategy and action plan, with clearer outcomes and a stronger accountability structure.

Due to the low starting baseline, the NCIG has yet to deliver anything like the scale of change required to ensure that people with neurological conditions across the whole of Wales have safe, timely and equitable access to treatment, services and support.

While the current approach has begun to yield positive results, it will not be possible to create the step change that is needed without wider strategic commitment from across NHS Wales, from Welsh Government and from local authorities at a senior level. Improving services and support for people with neurological conditions must be sustained if we're to make real change to people's lives. It's also evident that people with neurological conditions and carers must be partners in this process. While the focus on increasing support for rehabilitation in the community is welcomed, the poor experiences that are reported show that sustained focus and continued investment is necessary. This is urgently required given the damaging impact of shielding or self-isolating due to the coronavirus pandemic on many people living with a neurological condition.

The Wales Neurological Alliance survey on the impact of the coronavirus pandemic revealed that it has significantly impacted on people living with neurological conditions, and has had major ramifications on the provision of health and social care services for them. Although people with neurological conditions have needed to continue to access specialist services during the outbreak and beyond to maintain their well-being, isolation and shielding has increased anxiety and impacted on the mental health of people living with neurological conditions, triggering or exacerbating their symptoms or condition. Rehabilitation and mental health services have not adapted to meet the meet the needs of people living with neurological conditions. Services and treatment have been delayed or stopped during the pandemic. The NHS in Wales must apply strong leadership and set out its priorities for restarting services for people living with neurological conditions as soon as it is clinically safe to do so.

Our report is based entirely upon the extensive written and oral evidence we received from a wide range of stakeholders, including individuals living with neurological conditions and carers, charities representing people affected by neurological conditions, specialist clinicians, the royal colleges, the Wales Neurological Alliance and the neurological conditions implementation group. We commend our report to the Welsh Government and we look forward to their response. Thank you. Diolch.

Thank you. I now call on the Minister for Health and Social Services to reply to the debate—Vaughan Gething. 

Thank you, Deputy Llywydd. I want to thank Mark Isherwood for bringing the cross-party group's report to the Chamber. I have listened carefully to what he has to say, and there are a range of valid points that I would agree with and I hope that I manage to touch on in the response. I am grateful to the cross-party group and to all those who took the time to share their professional and personal experience, as well as the expertise of people with neurological conditions, carers, the royal colleges, the NHS and the third sector. The report and the recommendations will be considered at the neurological conditions implementation group, due to meet on 7 October. I will write to Members following that meeting, with the Welsh Government and the implementation group's joint response to the report. 

I firmly believe that providing good-quality services for people living with neurological conditions is vital, and that of course needs to be balanced with keeping people safe and well. As with many other major health conditions, some services were temporarily suspended or reduced as resources were diverted and as the first stage of the pandemic took hold. Health boards, as part of their quarterly planning, were required to redesign the care environment to ensure that those patients with or suspected of having COVID were and are kept separate from other patients. Where services stopped or reduced, consultants have been asked to go through their waiting lists to risk stratify and prioritise each patient. The aim and objective is that, when it was possible to safely reintroduce relevant services, those with the most urgent need were seen first. Health boards continue to hold virtual and telephone consultations with patients and, where it is necessary and in the best interests of the patient, they are also seen face to face. 

Last week, I published the winter protection plan. That plan sets out what is needed next to provide safe and effective health and social care services and support patients and our workforce over the months ahead. It's important to recognise that the challenges of this winter will be even greater than any normal winter, given the need to respond to the COVID outbreak and the resurgence of the virus that we have seen over the recent weeks. As such, the recommendations within the cross-party group report must be considered alongside the significant pressure that health and social care services continue to face. However, the Welsh Government remains committed to ensuring that anyone with a neurological condition should have access to the best possible care. I'm pleased the cross-party group report highlights the good work that has been taken forward in Wales by both health boards and the implementation group. 

The neurological conditions delivery plan, which sets out the Welsh Government's vision for people living with neurological conditions in Wales, is one that I chose to extend to March 2022, while successful approaches to implementation groups and delivery plans are developed. This will allow for a period of reflection on the lessons learned and new models of care used during the pandemic, whilst also allowing for alignment with the development of the national clinical framework that we set out in 'A Healthier Wales'. Any successor approach will consider the recommendations of the cross-party group report. In the meantime, we continue to invest £1.2 million annually to improve access for all patients needing neurorehab services in Wales. We continue to implement our commitment to improve access to psychological therapies, and have provided an additional £4 million to health boards to support this area. We've also committed to further invest in psychological therapies next year, as part of our budget proposals.

The implementation group will continue to work closely with Michelle Price, our national clinical lead for neurological conditions, to take forward the group's priorities. We will do so with a co-productive approach, as Mark Isherwood indicated, to increase awareness of neurological conditions, service development and developing clear pathways and models of care, based on best practice and research evidence and, of course, lived experience. 

The implementation group currently has three sub-groups for the areas identified: adult neurological, paediatric and seizures. The seizures group is a multiprofessional group whose primary focus is to develop an all-Wales seamless patient pathway across primary, secondary and tertiary care. The pediatric group is also multiprofessional, and looks at pediatric rehabilitation in particular. The neurorehab group is focusing on self-management, community neurorehab, technology and rehabilitation, and in-patient rehabilitation. These groups will be kept under review and refocused as priorities change and develop. 

As I indicated, the patient voice is fundamental if we're to improve the quality of our services across health and care, and, of course, that includes the neurological conditions implementation group. They have always had service user representation from its inception. The implementation group has also extended funding to the Wales Neurological Alliance, so that their project manager can develop a network of service users across Wales to inform awareness raising and raising support for future service improvements. The Wales Neurological Alliance plays a crucial role in raising awareness and signposting information for each condition where appropriate. I'm grateful to the alliance, and other healthcare third sector organisations, for providing regular patient feedback on essential services during the pandemic. 

In conclusion, I believe we have made good progress to improve neurological services in Wales throughout the last three years. However, we recognise that there is more that we should and must do. The recommendations of the cross-party group report will help to provide additional focus, as we continue to strive for excellence in this area of healthcare. Thank you. 

And that brings today's proceedings to a close. Thank you.

The meeting ended at 19:46.