Reform of stroke services could lead the way for health transformation

Reform of stroke services in Northern Ireland could be the flagship change in wider healthcare transformation.

Our entire health system needs to be changed to survive huge increases in both demand and the nature of that demand, driven by demographic shifts.

A new report this week from charity the Stroke Association lays bare the need for huge structural changes – and stroke reform could a benchmark in the wider overhaul of Health and Social Care.

Struggling to Recover highlighted that, while there are some great aspects of service here in Northern Ireland, there are problems or shortfalls across the system, including the lack of 24/7 acute services and wholly inadequate post-acute care to assist people to make a good recovery from stroke.

Under planned health reforms, acute services will see increased specialisation, and consolidation of expertise – likely alongside a reduction in geographical spread, with fewer locations offering specific services within a given area.

At the same time, there will be much greater support given to self-care and community- and home-based services.

Done correctly, this will improve the outcomes in acute settings as well as allowing people to maintain their independence following (or living with) serious health problems.

Brenda Maguire, Stroke Association Head of Influencing and Communications, spoke to Scope this week, saying that the organisation is hugely supportive of the principles of health reform – but that action needs to be taken now.

“We know that stroke was identified as the top priority in the Bengoa and Delivering Together reforms and that health officials are really committed to transforming this important service.

“There is set to be reorganisation of stroke services to create a number of hyperacute stroke units. At this minute we have 11 units that admit stroke patients but services are spread too thinly, the workforce is spread too thinly - we don’t have a 24/7 stroke service and we are not delivering the outcomes people need in order to have good recovery. We need to modernise stroke services to save more lives and reduce disability.

“We are working with the Health and Social Care Board, Chest Heart Stroke, and a group of stroke survivors and carers to co-produce a future vision for services. This report will feed into that. Stroke survivors and carers have told us they feel abandoned and don’t get the rehabilitation and support they need to make a good recovery. They’ve told us they need more emotional support, rehabilitation and help for carers. So we know what the issues are and we have a great opportunity to work together to create better services.

“As mentioned in the report, our biggest concern is that these issues were known about in 2008, the 2014 RQIA report and 2017 pre-consultation highlighted them again, but there hasn’t been a concerted effort to tackle them.

“We are at a key juncture now. There is going to be reform acute services, but we need to look at the whole pathway. We cannot miss this opportunity to reform post-acute services as well. This is the moment for stroke treatment and care and it’s important we get it right.”

Surviving

Struggling to Recover was launched on Monday afternoon at Stormont. Stroke survivor Rosemary Brown addressed the audience to outline her own experience since her stroke in 2017.

“I’m so grateful for the great care I received in hospital but I felt very lost when I was sent home. My brain had just had the biggest shock of its life and I was feeling shell shocked. I didn’t know where to turn and felt a bit abandoned for a few weeks.

“When I was sent home from hospital I was given a few leaflets but I don’t think my brain could really process that information at the time. It was just all too much. Stroke survivors need quick access to physiotherapy and speech therapy which can help them make the best recovery possible.

“Referring people from the health service to services that can help should be as seamless as possible. It should happen automatically so people can get the support they need, instead of waiting too long for help”.

Every year around 4000 people have a stroke or TIA (mini-stroke) in Northern Ireland and there are around 1000 stroke related deaths. There are more than 37,000 stroke survivors in Northern Ireland.

Report

The Stroke Association’s paper, Struggling to Recover, developed in partnership with Dr Niamh Kennedy of Ulster University found that:

• Stroke survivors in Northern Ireland receive approximately one third of the recommended 45mins of physiotherapy, occupational therapy and speech therapy per day 
• 45% of stroke survivors feel abandoned when they leave hospital
• 90% of stroke survivors feel their emotional needs are not met
• 78% of stroke survivors feel the care and support they receive at home is poor or very poor
• 98% of family carers say they sometimes find it difficult to cope

Ursula Ferguson, Head of Stroke Support at the charity, said: “Rehabilitation and long term support for stroke survivors has long been identified as the Cinderella of stroke services.

“Since the last stroke strategy was published in 2008, multiple independent reviews – including the RQIA’s 2014 Review of Stroke services – made recommendations for greater investment in services such as physiotherapy, speech therapy and emotional support. But unfortunately many of these recommendations have still not been fully implemented. This must change.

“We cannot enter another decade of unmet need and chronic underfunding of community based stroke care. Everyone affected by stroke in Northern Ireland has the right to make the best possible recovery.

“Over the last ten years there have been significant improvements in hospital stroke care in Northern Ireland with access to lifesaving blood clot treatments such as thrombolysis and Thrombectomy increasing. This is really good news. But while hospital stroke services are developed and improved, it is vital that rehabilitation and long term support for stroke survivors is not left behind.

“Our highly skilled and dedicated stroke workforce need the resources and time required to provide the recommended level and intensity of rehabilitation and support that all stroke survivors deserve. This will help more stroke survivors to live independently in their own homes, return to work and take control of their lives again.”

Purpose

There are numerous reasons why an organisation goes to the trouble of producing a report like this.

They need to know their own sector, and its needs and demands. Even when the broad results are unsurprising to those within the organisation – such as here – it still provides an evidence base to pursue needed reforms.

In this case the Stroke Association and peers like NI Chest Heart Stroke agree with the strategy of government (albeit strategy is one thing, and execution another and, when it comes to stroke reform, time is pressing).

However, one conversation that still needs to be had is between those seeking these changes – which includes the Department of Health, health officials, clinicians and the third sector – and the public.

The Transforming Your Care/Donaldson/Bengoa/Delivering Together overhaul of health has proven a difficult sell to a wary public that cares about its public health service but can interpret specialisation as cuts and closures, rather than a consolidation of provision that will improve outcomes for everyone.

The findings from Struggling to Recover made a huge dent in local news, including the front page of the News Letter and discussions on Good Morning Ulster, Frank Mitchell on U105 and UTV Live News.

“Our press release actually got picked up and went right across the UK – because the essence of the story is that it’s the same experience in many places. I think that, although our figures are from an NI study, they reflect the experiences of many stroke survivors.

“We expect that there will be a public consultation soon, specifically on reforming stroke hospital services. The proposed changes will be significant, and they will have an impact on people, but we feel they will bring about better acute stroke care.”

Ms Maguire believes that public engagement, with information such as this new report, and also the SSNAP (Sentinel Stroke National Audit Programme) data will show the public how important it is for HSC to restructure.

“What that broadly tells us is our services fall behind the rest of the UK. I think if people really understood how our services compare, and the potential for much better outcomes, they will support reform.

“Change is difficult and we know that some people might be worried about what the changes could mean for them. We want everyone affected by stroke to get the best possible treatment and care and we can’t achieve that without some changes to our current stroke service. There is an important conversation that needs to take place with the public to listen to their views, tell them about the proposals and and give people who use stroke services an opportunity to shape the future service We are encouraging stroke survivors and carers across Northern Ireland to get involved”

“The Stroke Association and Chest Heart Stroke are both involved in planning for change. We all want the same things - more lives saved and less disability.”