ICS0026

Written evidence submitted by The Stroke Association

The Stroke Association welcomes the opportunity to provide evidence to the Public Accounts Committee on the progress in establishing Integrated Care Systems (ICSs) in England.

About the Stroke Association

The Stroke Association is the UK’s largest charity for people affected by stroke. We're here to support people to rebuild their lives after stroke. We provide specialist support, fund critical research and campaign to make sure people affected by stroke get the very best care and support to rebuild their lives. 

There are over 100,000 new strokes every year, and over 1.3 million stroke survivors in the UK today.[i] And these numbers are only set to grow. Stroke is the fourth biggest killer in the UK. And, the cost of stroke to our society is around £26 billion a year.[ii] Sadly, we know stroke causes a greater range of disabilities than any other condition. Almost two-thirds of stroke survivors leave hospital with a disability.[iii] However, thanks to improvements in stroke care, you are now twice as likely to survive a stroke compared to 20 years ago.  

Our vision is for there to be fewer strokes, and for people affected by stroke to get the help they need to live the best life they can.

In summary

ICSs provide an opportunity to realise this vision, however they must recognise:

1. The vital role of the third sector in enabling ICSs to achieve their objectives of improved outcomes, reduced inequity and enhanced productivity.
2. The current inequity of access and provision to stroke treatments, care and support - including game-changing stroke treatments, like thrombectomy - is creating an unacceptable postcode lottery. ICSs must prioritise improvements across the whole pathway from prevention to life after stroke support. There is also a clear need for integrated joined-up personalised care for stroke survivors after they leave hospital that is holistic and focuses on not just the physical impacts of stroke but the mental and emotional needs too. We also support the Community Rehabilitation Alliance’s call for Integrated Care Boards (ICBs) to prioritise improved access to quality rehabilitation to deliver their strategic objectives in relation to public health and wellbeing outcomes, health inequity and local economies. This includes appointing Single Accountable Leads for Rehabilitation to be accountable for key metrics relating to rehabilitation provision and reducing the gap in healthy life expectancy. 
3. There is an urgent need to resolve tensions between condition specific networks, such as Integrated Stroke Delivery Networks (ISDNs) and ICSs to ensure they align and support each other. For ICSs to be successful in meeting their aims, they must work alongside ISDNs to meet the goals set out in the Long Term Plan and National Stroke Service Model (NSSM).
4. The importance of strengthening the role of patient and public involvement and genuine co-production to create person-centred integrated care is key to getting things right for people affected by stroke.

1.       The role of the third sector in enabling ICSs to achieve their objectives

1.1. The VCSE sector must be seen as a key systems and delivery partner for ICSs. The sector is a vital delivery partner, critical friend, convenor and connector and source of patient voice and insight.

1.2. The VCSE sector can also enable ICSs to meet their objectives of enhanced productivity and value for money, providing strategic and deliverable support and helping to alleviate increased pressures on the health and care system. For example, during the pandemic, responding to the unmet needs of stroke survivors leaving hospital sooner than ever before, the Stroke Association, in collaboration with the NHS, launched Stroke Association Connect. This service for newly diagnosed stroke survivors ensured that stroke survivors didn’t feel abandoned when they left hospital. It joined them up with our team of skilled Support Line Officers who contacted them within days of leaving hospital, providing immediate support. This integrated working, at scale, ensures that stroke survivors get the joined-up support they need and that we’re all working together to make every contact count.

1.3. It is vital that ICSs include all partners, including the third sector, in decision making from the very beginning. And, as per CQC’s annual State of Care report, include all services working in the system in planning.[iv] The presence of national charities in local communities means we understand both the population needs within ICSs and regions, but also the large scale ‘big data’ unmet needs of stroke survivors. Our national reach also means we can play a key convening role in bringing clinicians together, supporting the identification and sharing of best practice between regions. Without this, there’s a real threat that ICSs have such a local focus that it exacerbates variation in care and misses key opportunities to support learning and service improvement. ICSs should provide clear and transparent guidelines on how to engage meaningfully.

1.1. ICSs must be ready to build on good practice of collaboration and co-production with the third sector that we’ve seen in pockets across the country. The Stroke Association has already partnered and worked with a number of ICSs to improve services locally for stroke survivors. For example, in 2019/20 we worked with the ICS in West Yorkshire and Harrogate to improve post-acute and community stroke rehabilitation allowing the ICS to see where there were gaps in service provision. Translating learnings from projects like these into action will be instrumental in supporting ICSs to improve outcomes for stroke survivors.

2.       ICSs must prioritise reducing the inequity of access and provision to stroke treatments and support

2.1. The current inequity of access and provision to stroke treatments, care and support - including game-changing stroke treatments, like thrombectomy - is creating an unacceptable postcode lottery. ICSs must prioritise improvements across the whole pathway from prevention to life after stroke support. The stroke pathway, because it touches so many parts of the health and care system, makes it a useful focus for overall improvement and a litmus test for the health of the system.

2.2. ICSs must prioritise investment in treatments, like thrombectomy. Thrombectomy is a game-changing treatment for stroke. It saves brains, saves money and changes lives. And yet, the Long Term Plan target of delivering the treatment to 10% of stroke patients by 2022 was missed, with nearly 80% of stroke patients who needed the treatment missing out in 2020/21.[v] ICSs must be ready to work with ISDNs to prioritise thrombectomy so that no one misses out. This would enable ICSs to meet their objectives of improving outcomes, reducing inequity in access and enhancing value for money objectives. Rolling out thrombectomy fully could save the UK £73 million a year, by reducing demand for rehabilitation and community support services. If ICSs are successful in improving access to thrombectomy, this will be a clear indicator that they are meeting their objectives as improvements require collaboration and incremental changes across the whole pathway.  

2.3. The new ICS CVD leads, working in collaboration with the ISDNs, must play a key role in championing and driving forward CVD and stroke improvements, particularly given the enormous opportunity to save lives through prevention.

2.4. Stroke survivors are not getting the care they need, with too many stroke survivors feeling abandoned once leaving hospital. Support is not provided for long enough and the mental health impacts of a stroke are overlooked, with one in four stroke survivors reporting not receiving enough emotional support.[vi] And, one in three stroke survivors feeling their support focused on their medical condition and not them as a person. It’s essential that ICSs join up care and support to meet the needs of the individual, from addressing risk factors right through to community care, social care and end-of-life. ICSs must also give parity of esteem to the emotional and social impacts of stroke that we know are hugely important for stroke survivors if they are to make effective recoveries. 

2.5. Stroke is one of the biggest, and growing, health challenges of our time. Yet, because it is largely preventable and very often recoverable, it is a particularly investable condition. There are great gains to be made with investment in rehabilitation and life after stroke. The findings of our Stroke recoveries at risk report, a survey of 2,000 stroke survivors and carers in June 2020, showed that the pandemic has exacerbated existing problems accessing sufficient rehabilitation and support.[vii] Pre Covid-19, there were already significant shortfalls in the amount, duration and quality of rehabilitation stroke survivors received across the UK. We support the Community Rehabilitation Alliance’s call for Integrated Care Boards (ICBs) to prioritise improved access to quality rehabilitation to deliver their strategic objectives in relation to public health and wellbeing outcomes, health inequity and local economies. This includes appointing Single Accountable Leads for Rehabilitation to be accountable for driving forward key metrics relating to rehabilitation provision and reducing the gap in healthy life expectancy. 

3. For ICSs to be successful in meeting their aims, they must work alongside ISDNs to meet the goals set out in the Long Term Plan and NSSM.

3.1. The NSSM and the introduction of 20 ISDNs tasked with driving improvement in stroke locally, if prioritised, are integral to the success of the Long Term Plan.[viii] However, ICSs pose a real risk to stroke progress if they don’t also support the existing ambitions and momentum in stroke and align ambitions with ISDNs. 

3.2. ISDNs may span multiple ICSs, however there is currently no mechanism to ensure that their plans and priorities are aligned or that ICSs give due priority to ISDNs. This is a clear risk to the successful delivery of the Long Term Plan and to the stroke commitments within it. 

3.3. ISDNs and their ICSs must work together to help to reduce inequalities in stroke care, widen access to time-sensitive treatments such as thrombolysis and thrombectomy, and drive real improvements in stroke rehabilitation and support, allowing stroke survivors to make their best possible recoveries. ICSs should talk to their ISDN leads, reflect stroke in their future plans, governance and partnership arrangements and commission the right evidence-based interventions across the stroke pathway. ICSs must also be bought into decision making with the ICSs from the very beginning.

3.4. To make this happen we need to see structures put in place to ensure that ICS bodies act in concert with the networks they’re a part of. This could be achieved in a number of ways for stroke, including memoranda of understanding between ISDNs and ICS boards, ICS representation within ISDN boards, or the inclusion of existing ISDN priorities within ICS plans. 

3.5. ISDNs are the blueprint for good, joined-up working that makes real systems change. Unless ICSs and ISDNs work in collaboration, we risk losing momentum on the progress made towards the Long Term Plan’s stroke goals, as well as stalling the future for all condition specific networks.

3.6. ICSs, ISDNs and the NSSM offers a way to improve stroke care, treatment and support across the country and, if done right, has the opportunity to be an exemplar for integrated working.

4. Strengthening public and patient involvement

4.1. ICSs must work hard to see robust patient and carer involvement in the development of new pathways and care models to ensure that they work for patients, carers and the public, as well as clinicians. This is currently happening sporadically across the 42 ICSs. ISCs should draw upon existing patient public involvement groups created by the ISDNs, which are a ready engagement opportunity.

4.2. ICSs should learn from existing good practice examples of co-production. For example, the Stroke Association ran a project to strengthening the patient voice with Nottingham and Nottinghamshire ICS in 2019. The project aimed to embed the voice of stroke survivors in a review of local stroke services right across the pathway in the ICS. As a result of the project, the system now has a direct route established with a community of local people affected by stroke, who feel engaged and informed about the ambitions. The Nottingham and Nottinghamshire ICS Programme Team reflected on the partnership: “working in partnership with the Stroke Association provided national expertise and helped to apply some of the learning and best practice through the process of review. They were instrumental in supporting the programme in recruiting, supporting and ensuring the voice of stroke survivors and the family were heard and that future service strategy was co-designed with and by them.”

October 2022

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