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 which 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 the Health and Social Care Committee and the Welsh Government with recommendations for action to:
- Improve the implementation of the current NCDP; and
- Deliver a long term strategic approach to raising standards in treatment, services and support for people with neurological conditions in Wales.
Many of the organisations and individuals who submitted evidence to the inquiry focussed on opportunities, concerns and challenges related to the way in which the plan has been implemented.
Some felt that it is highly unlikely that the outcomes and performance measures in each chapter of the NCDP will be met by 2020.
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 at 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 impact.
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 (WNA) to create a Patient Reported Experience Measure (PREM) as a positive step.
Discreet educational activity was cited by NCIG.
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 has 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 – e.g. 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 ring-fenced time.
NCIG has worked hard to establish a baseline, and is beginning to promote good practice and marshal pragmatic improvement activity.
It is vital that this group should continue to exist and be embedded more permanently, in order to deliver a better networked 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 - it would be extremely detrimental to lose the focus on service improvement and networked approach that the NCDP has introduced.
- Funded posts for a Clinical Lead and a coordinator – 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 or LHBs 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 to cascade information to the people who are actually on the ground.
- Key management data in terms of re-admission rates, waiting times, length of stay in hospital, etc. is collected and analysed at LHB 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 is 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 LHBs 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 LHB level
- LHB 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 they need at all.
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 conditions 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 that is 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 which 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 are to make real change to people’s lives.
It is 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 were reported show that sustained focus and continued investment is necessary.
This is also 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 wellbeing:
• Isolation and shielding has increased anxiety and impacted on the mental health of people living with neurological conditions, triggering or exacerbating their symptoms/condition.
• Rehabilitation and mental health services have not adapted to meet the needs of people living with neurological conditions.
• Services and treatments have been delayed or stopped during the coronavirus 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; · Royal Colleges;
- The Wales Neurological Alliance; and
- The Neurological Conditions Implementation Group.
We commend it to the Welsh Government and look forward to their response.