Stroke services require reform

This week the Health and Social Care Board took the unusual step of launching a pre-consultation into the reconfiguration of stroke services.

The HSCB proposals were put together in conjunction with stroke survivors and third-sector advocates, as well as using clinical expertise, so start from a position of broad support among key stakeholders. Stroke survivors explain their support here.

That should make things straightforward. They are not. The reconfigurations that are deemed necessary follow the general principles of Transforming Your Care (TYC), Donaldson and Bengoa. Officials and other campaigners driving the reforms are aware of the pitfalls, and the dangers of public misconceptions.

Nevertheless, the need for change is real and tangible. Outcomes from local stroke services are not what they should be. Change is required.

Scope spoke with Brenda Maguire, from the Stroke Association, who said: “Reconfiguration of services is the only show in town for us right now. With stroke services as with many other services, our resources are spread too thinly so the only option to ensure are the best outcomes for people is to reshape the service model – building specialist sites with full-time access and a full suite of services including consultants, stroke nurses, physiotherapists and speech and language therapists.

“By doing this we can have experts available 24/7 at an appropriate number of sites, and that may mean fewer sites, but that will mean better outcomes for everyone.

“We know the impact this can have from similar reconfigurations that have taken place in London and Manchester. Their outcomes have improved enormously. Up to 100 lives have been saved so far by reducing avoidable deaths.

“This is what we want to see in Northern Ireland – we want both to reduce the number of avoidable deaths and the impact of disability. If people get stroke treatment fast that will have a massive impact on the level of disability they are left with.”

The case for change

The pre-consultation makes seven key proposals. Five of them relate to centralisation of services that allows for greater specialisation, leading to better acute and hyperacute provision for all patients. Two relate to more comprehensive long-term, community services with better access for patients than is currently the case.

The Royal College of Physicians’ Sentinel Stroke National Audit Programme (SSNAP) provides details on regional data and statistics for stroke provision:

• There are 36,020 people in NI on the stroke/TIA-mini stroke register (comprising 1.8% of population – which is a comparable prevalence rate to rest of UK)
• Stroke mortality is significantly higher than the UK average - 71.2 per 100,000 compared with 66.5 per 100,000
• Of NI’s eight hospitals that routinely admit stroke patients, according to the SSNAP ratings, two are classed as “reasonable overall” (some areas require improvement – C grades), four are classed as “several areas require improvement” – (D grade) and two classed as ‘substantial improvement required” (E grades). No hospitals have overall A or B SSNAP grades, yet 47% of hospitals across the UK are rated A or B.

Local provision is far short of where it should be.

Ms Maguire said: “Rapid treatment is vital when dealing with stroke. Waiting times in Northern Ireland are very high, despite our large number of sites – or, rather, because of them. Stroke mortality is really high. More people are dying than should be. Others are being left with avoidable levels of disability.”

This leads to the same hard sell as with Transforming Your Care (and Donaldson, and Bengoa) generally. Convincing the public that fewer acute settings will lead to better treatment for everyone, even those who might have a local centre that ultimately closes, and that geographical convenience is not the best measure of access to services.

Media coverage for the announcement of this pre-consultation fell into the usual traps of focusing on closures. Even when articles are full of measured content and make the salient points, such as here and here, their top lines still tend to create a picture of closures (which most people identify with cutbacks, rather than improvements in provision).

The fact that Northern Irish outcomes lag so far behind despite our high number of centres should make this an easier sell than it is.

Long-term care

In terms of public debate, the fact that improvements in acute care require the perhaps counterintuitive move towards centralisation is only one issue for the Stroke Association and other campaigners. Stroke survivors themselves broadly support these reforms – with Ms Maguire saying there are perhaps some lessons for health reformers generally.

“Involve experts by experience from the beginning of the process and be very open and transparent about the proposals. That, in my opinion, is really the key.

“Service users have been involved in the preparation for this preconsultation. The HSCB has a service user forum which includes around 25 stroke survivors and carers who helped shape these proposals and the conversations that have been had to date.

“This has been very important because they are experts by experience and they had lots of ideas about how services can be improved. By and large the stroke community understands the need for change because they see the problems in long-term support.”

However, communities at large tend to be highly resistant to reduction of services in their local hospitals. And if the discourse focuses on what is happening in hospitals, it misses the area of care most in need of change – long-term support.

Ms Maguire said: “Naturally the conversation, for a lot of people, is going to focus on the number of and location of acute hospitals, but that’s only a small part of the stroke pathway. We need to see long term reform across the whole pathway so people are able to thrive after getting a stroke.

“If everything works as it should someone will spend three days in a hyperacute stroke unit, a few weeks in acute care, and will then be supported after discharge in the community for years and years.

“The short end of the pathway is crucial, but short. What a lot of stroke survivors tell us is that they receive good care in the lifesaving phase but feel abandoned at the hospital gate – they feel isolated and that they lack care in the community. A third of stroke survivors will have a communicative disability, which multiplies that sense of isolation because they can’t necessarily advocate for themselves.”

Third sector

Ms Maguire said, when it comes to stroke services, there are good relationships between the statutory and third sectors, which helps with existing provision and hopefully will help with reform.

On top of that there are some things that third sector organisations, such as the Stroke Association and other groups like NI Chest Heart and Stroke, do better than anyone else.

“I think obviously in the charity sector we have the opportunity to be more innovative and flexible in our approach so we can adapt and change more quickly.

“It’s also the nature of the sector to maybe be a bit warmer, and we maybe have that bit more time to spent with people, which is especially important with stroke and the issues involved with that. That’s a privilege we have.

“We see ourselves as the voice of the stroke community right across the UK, and we campaign on behalf of stroke survivors and their carers, and that’s the great advantage the sector has – we can advocate on their behalf, and we try to do this by working with stroke survivors and involve them in our campaigns.”

Hopefully reform in stroke services will move at speed, despite the complications from the local political situation.

The SSNAP statistics outline how current structures are not where they should be – resulting in outcomes that fall short.

And if the necessary reforms can be put in place this could provide some hope that the Transforming Your Care principles, which are essential to improve health and social care across Northern Ireland into the future, can follow in these footsteps.