Hansard

Thank you, convener, and good morning to you and committee members. As you know, I wrote to the committee in September. The opening statement that I am about to make touches on some of the points in my letter, but it also covers the recently published neurological care and support in Scotland plan. I start by reiterating our commitment to ensuring that everyone in Scotland who is living with a neurological condition, including ME, is able to access the best possible care and support and benefit from healthcare services that are safe, effective and person centred. Since I spoke in January, there have been a number of developments that are relevant to the petition. In March, Healthcare Improvement Scotland published its revised “General standards for neurological care and support”, which we worked closely in partnership to deliver. The revised standards, which are based on the 2018 health and social care standards, represent significant collaboration across statutory bodies, third sector organisations and people with lived experience. The standards stipulate that people should expect to receive the same high-quality service from health and social care organisations that support them, regardless of their condition, geographical location or individual circumstances. Yesterday we launched Scotland’s first framework for action on neurological care and support, and over the next five years we will work closely with partners including HIS, NHS Education for Scotland and key stakeholders across the neurological community to implement the 17 commitments to improve access to care and support. The framework is not condition specific, but we recognise ME as a neurological condition. During the development of the framework, we heard from the ME community through both the lived experience survey that was led by the Health and Social Care Alliance Scotland and the responses to our public consultation. I hope that people who are affected by ME will identify with the framework’s five aims, which include ensuring equitable and timely access to high standards of person-centred care, establishing a sustainable workforce model and improving the co-ordination of care and support for people with neurological conditions. Underpinning those aims are commitments setting out the actions that we will take. For example, the petition seeks further research on ME, and the neurological framework outlines how we will support the neurological research agenda. As I highlighted in my letter to you in September, the chief scientist office has been in dialogue with ME research organisations, researchers and various ME third sector groups to explore how we can specifically do that for ME, including with opportunities through the existing research that we are co-funding at the University of Edinburgh. We have also told ME organisations that we would consider a funding proposal from them to contribute support to the creation of a priority-setting partnership through the James Lind Alliance, and I understand that organisations see the value in pursuing that. This is also partly about understanding the prevalence of neurological conditions—I know that the petitioner is keen that we make progress on that—so another commitment is to improve the recording of neurological conditions such as ME in people’s routine health and care records so that they are visible to appropriate services. We have prioritised the continuation of the prevalence work that we started with the Information Services Division in 2018, recognising that, to make progress, we are subject to developments that are under way, particularly with regard to primary care systems. I still expect progress to be made over the next year. On awareness of the information and resources that are available on neurological conditions for both patients and professionals, we have committed to actions that support shared decision making and access to supported self-management, building on and learning from existing provision including peer support networks. My officials have been supporting and will continue to support ME organisations to explore opportunities with NHS Education for Scotland and other bodies to develop training materials for professionals about ME. That includes understanding the context of undergraduate, postgraduate and continuous development resources generally for neurological conditions. I hope that the petitioner will also welcome the focus that the framework will bring to the testing and evaluation of generic community-based, multidisciplinary team models to assess innovative ways of delivering care, including new roles and new arrangements for co-ordinating care and support for people with neurological conditions. Another relevant commitment is our intention to work with others to develop nationally agreed, regionally and locally applied guidelines for health services and referral pathways. In addition, we will explore the potential of national care frameworks to inform neurological care and support. I know that some of the third sector ME organisations are already considering the potential of an existing framework for another condition and how it might be beneficial to people with ME. When implementing the commitment from the framework, we will be mindful of the need to consider how different types of neurological conditions, such as ME, can be represented in that work. Another area that is relevant to the petition is the commitment to improve the use of digital technology to ensure that integrated services seamlessly meet the needs of people with neurological conditions and those who provide care and support to them. It has been demonstrated that the introduction of technology can make a huge difference for some neurological conditions, and we will look to learn from and build on that over the next years. Implementation of the framework and the improvement actions is being informed by quality management, and specifically quality planning, control, assurance and improvement that is linked to leadership and learning systems and processes that will promote collaboration with people who have lived experience and are involved with the services. Over the past year, my officials have been in regular communication with the petitioner, Emma Shorter, and #MEAction, as well as with healthcare professionals with relevant experience, individuals who are living with the condition and other organisations that represent those who are affected by ME. As I highlighted in my letter to the committee, we have commissioned two pieces of work. The first is an updated needs assessment by the Scottish Public Health Network to understand the practices and provision for ME in Scotland, which will cover both adults and children and young people. The second is a views-gathering exercise facilitated by the Scottish health council to find out what good care and support would look like for people with lived experience of ME. On advice from ME organisations, we have kept the scope of that second piece of work to adults. When the findings of that work are available next year—I believe that we expect it early in 2020—we will convene a short-life group that will include people with lived experience and clinicians to consider what practical steps we can take to make a difference in advance of the draft National Institute for Health and Care Excellence guideline. The group will consider what can be done ahead of the NICE guideline being available. I understand that NICE recently provided an update on the timing of its revised guideline on ME that postponed publication of the draft until July and the final version until December 2020. I know that that will be disappointing for those who are already frustrated by the wait, but I understand that the reason behind the delay is the need to take account of the additional work that NICE has commissioned on patient experience. In light of the recognised limitations on available clinical evidence and the calls for greater emphasis on lived experience, I hope that that reassures people that NICE is undertaking a comprehensive review of the latest evidence. That is why we do not plan at this point to make any changes to the advice in the Scottish good practice statement on ME ahead of considering the NICE findings, including guidance on graded exercise therapy and cognitive behavioural therapy. Our previous submissions have set out the reasons for that but, to summarise, I note that those therapies are reported as being effective for some people, but not all. I note that, in the submissions that you have received from health boards, many refer specifically to the Scottish statement, which provides clear information about the appropriateness of and circumstances for using those therapies. We highlighted the Scottish statement to health boards when it was introduced and we will do that again if we update it. In setting out all of that, I appreciate that there will be questions about the acceleration of progress. I recognise and share the frustration behind people’s need for change at pace, but it is important to ensure that change is enacted based on appropriate evidence and shared principles to support the co-production of services with those who are living with ME. That is why we have invested time to ensure that the work that we are commissioning is shaped by people with ME and the third sector organisations that represent them. I hope that that was a helpful opening statement. We are, of course, very happy to take questions.