This week’s leadership message comes from Shelley Russell, Programme Manager for Neurodiversity and Learning Disabilities.

Posted on: 25 October 2024

This week’s leadership message comes from Shelley Russell, Programme Manager for Neurodiversity and Learning Disabilities. For World Stroke Day (29 October), we have a blog from Matt Spencer, the Integrated Stroke Delivery Network (ISDN) Manager for the West Yorkshire and Harrogate region, and our final blog this week is an update and news of a new opportunity at West Yorkshire Long Covid services from Becca Spavin, Programme Director for the West Yorkshire Community Health Services Providers Collaborative, and colleagues.

Shelley Russell Hello, my name is Shelley and I am the Integrated Care Board’s (ICB) Programme Manager for Neurodiversity and Learning Disabilities.

October is ADHD Awareness Month and autism and ADHD continue to be in the spotlight in the media whilst remaining a key priority for West Yorkshire.

Last week, the children’s commissioner published the report Waiting times for assessment and support for autism, ADHD and other neurodevelopmental conditions describing the ‘invisible crisis’ and how services have not been resourced to keep pace with the increasing need for assessment for children. We are also acutely aware of this in adult services too, regionally and nationally. In his report published in September, Lord Darzi also highlights the gap between need and capacity across the country for autism and ADHD. Both reports highlight the inequalities and the lack of support for those with the greatest need, requiring an integrated approach in early identification, support, assessment and treatment.

Providers are struggling with extreme demand for assessments. Leeds adult ADHD service has made the difficult decision to temporarily close its doors to new referrals and is working locally to develop a new vision for adult ADHD services. These are very challenging times that are felt across West Yorkshire and nationally, and we continue to work with the regional NHSE team and the national ADHD task force.

We are, however, making progress in the work we do together across West Yorkshire, and I am delighted to be able to share with you the next steps following the two neurodiversity summits we have held over the past year. It was fantastic to see so many engaged and passionate people in the room, whether that be as experts by experience or by profession.

The second summit gave us an opportunity to build on the shared vision of a neurodiverse friendly West Yorkshire partnership where we celebrate uniqueness and promote inclusion.

We should work together on a cross-sector approach to offering early support and reasonable adjustments based on need
West Yorkshire should explore consistency in screening and triage for autism and/or ADHD assessment pathways
We should explore how digital solutions could make the assessment pathway more efficient.

The summits provided an opportunity for the collective voice of people with lived experience and people working in the system to share what the challenges and priorities are, many of which are aligned with the recommendations in the children’s commissioner report.

We know that neurodiversity is a challenging space to work in. I would like to thank everyone for their continued commitment in these challenging times, and for keeping the people who use these services at the heart of those discussions.

You can find out more about our programme work on our web pages.

For World Stroke Day (29 October), this blog is from Matt Spencer, the Integrated Stroke Delivery Network (ISDN) Manager for the West Yorkshire and Harrogate region

Hello! I'm Matt Spencer, the Integrated Stroke Delivery Network (ISDN) Manager for the West Yorkshire and Harrogate region. I've been in this position for the past two years, but I bring along 18 years of experience in the NHS, primarily in frontline clinical roles with the Yorkshire Ambulance Service (YAS), where I also led their clinical pathways team. The ISDN work programme has now been integrated into the West Yorkshire Association of Acute Trusts (WYAAT).

In the UK, over 100,000 new stroke cases are reported each year, with more than a million people affected in the aftermath. On average, each new stroke case costs the NHS £45,000 in the first year and £25,000 in subsequent years, totalling an estimated £26 billion annually.

Stroke is the leading cause of disability in the UK. Many survivors face significant long-term physical and psychological challenges, as well as the risk of repeat strokes, transient ischaemic attacks, or death within a year. The economic implications of stroke prevention, treatment, and the resulting morbidity and mortality are considerable.

To tackle these issues, comprehensive stroke care pathways have been developed, focusing on early intervention, quick diagnosis and immediate treatment, which are critical for minimising brain damage and enhancing outcomes. The integration of multidisciplinary teams is essential in providing holistic care tailored to the unique needs of stroke survivors.

The ISDN focuses on uniting stakeholders from various sectors along the stroke pathway to identify critical areas and priorities for transformative change. By fostering collaboration and open communication, the ISDN aims to bridge gaps and create synergies between different organisations and communities across West Yorkshire and Harrogate. This integrated approach ensures diverse perspectives are considered, leading to more comprehensive and sustainable solutions. In this collaborative ecosystem, the exchange of knowledge and resources is vital. The ISDN facilitates this by encouraging stakeholders to co-create strategies to address both current challenges and future opportunities. Through these initiatives, the ISDN acts not only as a network but also as a catalyst for transformation, guiding a shared journey towards better outcomes and experiences for stroke survivors, their carers and families.

Our Life After Stroke Co-Production Group, which comprises people with lived experiences of stroke, their families, carers, healthcare professionals and representatives from the voluntary, community and social enterprise (VCSE) sectors, has been actively working on the development of an 'All Things Stroke' website. This website is the first initiative in a series of collaborative projects that the group will pursue, responding to the urgent need expressed by stroke survivors and their carers for improved support after hospital discharge. This need has highlighted a gap that currently exists which was also reflected in the findings of the latest stroke Patient Reported Experience Measures (PREMs) survey.

World Stroke Day, marked on 29 October, serves as a global platform to raise awareness about stroke. This year, the campaign highlights the importance of stroke prevention, urging everyone to take proactive measures to be #GreaterThanStroke. By understanding risk factors and adopting healthier lifestyles, we can significantly reduce the likelihood of experiencing a stroke. Simple changes like maintaining a balanced diet, engaging in regular physical activity, controlling blood pressure and avoiding smoking can make a significant difference.

Educational events, community outreach programmes and social media campaigns play a crucial role in spreading this important message. By sharing survival stories, providing rehabilitation resources and offering support to carers, we can build a strong network of resilience and hope.

Remember, every small step towards a healthier lifestyle is a step towards being #GreaterThanStroke. Let’s unite in this mission, not just on 29 October but every day, to create a world where strokes are less common and more lives are saved. Together we can make a profound impact, one heart and one mind at a time.

Our final blog this week is an update and news of a new opportunity at West Yorkshire Long Covid services from Becca Spavin, Programme Director for the West Yorkshire Community Health Services Providers Collaborative, and colleagues

“What an outstanding and excellent service you are providing. The high quality of responsive ongoing care and information that you provide is fantastic and the reassurance that gives me is priceless. Your delivery model should be replicated throughout the NHS!”

- Feedback from a person with Long Covid in West Yorkshire

Recent BBC reports about Long Covid have highlighted the severe impact on quality of life that it has on the 1.9million reported cases in England. In fact the Lancet recently published health-related quality of life scores that compared unfavourably to people with Multiple Sclerosis, heart failure and renal disease.

Rebecca Spavin While we still need to learn more about Long Covid and other infection associated chronic conditions, much has been done since the start of the pandemic across the five West Yorkshire Long Covid services. The first internationally recognised measure of outcome for those with Long Covid (Manoj et al., 2022) was developed in West Yorkshire, whilst the LOCOMOTION study has been key to further understanding the condition. West Yorkshire has led on digital innovation through the development of an app that patients can record outcomes and are currently exploring the potential for self-referrals (the first in England), as well as having one of the leading clinics nationally in the delivery of virtual group assessments.

Improved outcomes in overall symptom severity have been reported in 71% of people, while clinics have reported 100% patient satisfaction. Long Covid pathways have also contributed to the national prosperity, highlighted by the Darzi report as a key improvement required across the NHS: 88% of patients that were off work have returned to work and 100% of patients struggling to remain in work, have successfully stayed in work. Funding across all five places has also been used to fund local voluntary, community and social enterprises such as Shared Harmonies, ‘increasing confidence, communication and wellbeing through inspirational singing.’

The BBC also presented the link between Long Covid and another debilitating condition, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). Work commissioned last year by the West Yorkshire Association of Acute Trusts (WYAAT) and West Yorkshire Mental Health and Learning Disabilities and Autism (MHLDA) provider collaboratives, evaluated the provision of services for people with ME/CFS and the impact of Long Covid across West Yorkshire. The report presented data that has been further evidenced and published in West Yorkshire last week (Bodey, et al., 2024), that around 50% of patients with Long Covid would meet the criteria for ME/CFS. Furthermore, the report highlighted the expertise that exists within and surrounding the West Yorkshire ME/CFS service.

A recent report by Health Equity North: Navigating the Long Haul highlighted, using data from 2022, the North East and Yorkshire as having the second highest prevalence of Long Covid in England whilst also indicating twice the prevalence in the most deprived areas compared to the least deprived.

The success and innovation of the needs based Long Covid Pathways in forming alongside people with complex presentations and multiple conditions has created an opportunity for further learning and analysis of existing pathways and potential future models of care. Furthermore, there is a need to understand and ensure that we reach and meet the needs of those in the most deprived areas across West Yorkshire.

Working as a system of service leads, commissioners, and clinicians and with the support of the West Yorkshire Clinical and Care Professional Forum and Fellowship Programme: increasing diversity in leadership in West Yorkshre we are excited to announce that in partnership with the Community Collaborative and Bradford District Care NHS Foundation Trust, we are now advertising for a strategic lead role in the West Yorkshire system who, alongside a Leadership Fellow, will work towards these goals. Further details are at the end of this update.

The Fellowship Programme is a HSJ award-winning leadership development initiative which launched across West Yorkshire Health and Care Partnership in Autumn 2020. It was co-created by the system and leadership development team and the West Yorkshire race equality network (WY REN) and came as an action from the January 2020 event that convened the WY REN chairs to develop solutions to delivering on our ambition to increase the diversity of our leadership. The independent review led by Dame Donna Kinnair endorsed the programme by including the need for leadership development for ethnically diverse colleagues as part of the recommendations. The programme is now on its fourth cohort with the participants 75% of fellows moving on to their job of choice within six months of completion.

Rebecca Spavin – Programme Director West Yorkshire Community Health Services Provider Collaborative; Maureen Drake – Director of Allied Health Professions – Mid Yorkshire Teaching Trust; Rob Goodyear – Associate Director, Clinical and Professional Directorate, West Yorkshire ICB; Jeremey Gee – Service Lead, Long Covid Pathway, Bradford District and Craven Health and Care Partnership.

What else has been happening this week?

The NHS 10-year plan

Just launched: biggest conversation ever about the NHS The Government has this week launched a national engagement with the public and staff to inform the development of the new 10-year plan which is due out next spring.

In West Yorkshire, we will be contributing to the engagement by feeding in the vast amount of insight and feedback we have already. We will also be arranging activities across West Yorkshire to make sure that as many people as possible take part so that their voices are heard.

The Government recognises that greater integration, collaboration and partnership working for a more productive and efficient approach to high quality patient care is essential. They also recognise that NHS staff are working harder than ever to get services back on track, to get waiting lists down and consistently deliver the best care, and that many of the solutions we need are already here, working somewhere in the NHS today.

We encourage everyone to take part in the engagement. We will keep you updated about local opportunities but in the meantime go to change.nhs.uk to find out how you can take part.

West Yorkshire Health and Care Partnership’s Partnership Board meets in public

The Partnership Board met in public on Tuesday 22 October 2024, chaired by Cllr Tim Swift, Chair, West Yorkshire Health and Care Partnership Board and Deputy Leader of Calderdale Council. Papers from this meeting are available on the Partnership board meetings page.

Live podcast recording helps Partnership build a new equality, diversity and inclusion strategy for West Yorkshire

Following a special live and interactive recording of the Partnership’s 'Can You See Me?' podcast on 16 October, the episode has now been released on YouTube and via our social channels. The podcast was an opportunity to let partners and people in our communities share their views on what’s important as we build a new equality, diversity and inclusion strategy for West Yorkshire.

The podcast featured a panel of partners discussing a range of topics related to the development of the strategy and included comments from the live podcast audience. Watch at https://youtu.be/zDzP6r_xa9A

New specialist palliative and end of life care services for children and young people in West Yorkshire

0300 1021391 - 6pm to 8am weeknights and all weekend. Children's palliative care advice and support line

Caring for a child with a life-threatening and life-limiting health condition can be challenging at any time of day. But when a crisis occurs in the middle of the night, it can be terrifying. Where do you turn when you can’t reach your GP or the child’s consultant?

The ICB is working with Martin House and Forget Me Not children’s hospices to deliver a six-month pilot of an advice line for families living in West Yorkshire and the professionals who care for them.

Manned by specialist paediatric palliative care nurses and doctors based at the hospices, our advice line is available from 6pm to 8am weeknights and all weekend so families always have someone they can call on for advice, reassurance or signposting to appropriate services.

Call 0300 102 1391. Browse our web page for more information.

Red carpet premiere showcases trauma-informed mini-films

ATR film launch collage On 15 October, the Royal Armouries in Leeds hosted a red carpet premiere for a series of trauma-informed mini-films organised by our Adversity, Trauma and Resilience Programme. The event celebrated the region’s efforts to address trauma and adversity in communities, with awards presented in categories like Resilience Champion and Leadership in Addressing Health Inequalities.

The four-part film series highlights the journey towards becoming trauma-informed by 2030, with a focus on post-pandemic recovery, collaboration with local partners and meeting our ambitions. Guest speakers included Alison Lowe, OBE, Deputy Mayor for Policing and Crime, and representatives from various sectors attended to support the initiative.

The event reflected West Yorkshire’s commitment to building resilience and improving outcomes through a trauma-informed approach, spearheaded by the West Yorkshire Health and Care Partnership and the Violence Reduction Partnership. See our news page for more information.

Fellows showcase innovative work at Improving Population Health Fellowship event

IPH Fellowship event - person delivering a presentation An event last week at Wakefield District Housing brought together around 30 Improving Population Health fellows alongside colleagues from NHS West Yorkshire Integreated Care Board (ICB) who work on our Partnership's Improving Population Health programme.

The event covered the five fellowship topics: health equity, suicide prevention, climate change, anti-microbial resistance (AMR) and adversity, trauma and resilience (ATR).

The ICB's Head of Improving Population Health, Emm Irving, opened the event and introduced Rob Webster, CEO for NHS West Yorkshire Integreated Care Board, who spoke on the importance of partnerships and tackling health inequalities. Attendees also watched pre-recorded messages from Dr Sohail Abbas (Deputy Medical Director for the ICB), and ICB Cathy Elliott. Six fellows presented their innovative projects, sparking lively discussions and bringing energy and enthusiasm into the room.

YHealth4Growth

Promo graphic for Health Innovation Yorkshire and Humber Health and Work blog from Richard Stubbs Health Innovation Yorkshire & Humber has been convening activity in Yorkshire and the Humber to highlight the compelling assets and work that is already happening across Yorkshire and Humber to pave the way for inclusive access to work.

Chief executive, Richard Stubbs, covers this subject in more detail in his recent blog, which argues that good health through good employment is fundamental to tackling economic inactivity through ill health, regionally and beyond.