Stroke experiences reinforce the need for change

Most stroke survivors in Northern Ireland feel the recovery help they received was inadequate.

Today the Stroke Association published new research indicating that thousands of local survivors struggled to access the support needed to rebuild their lives.

Findings from the Stroke Association’s Lived Experience report, published to coincide with World Stroke Day, include:

• 59% of NI stroke survivors feel they got insufficient support with their recovery.
• Although more than four out of five (86%) survivors have mobility problems, almost half (48%) said they needed longer or more frequent support from physiotherapy services than was provided.
• 28% of survivors report that insufficient emotional support left them struggling to cope.
• 20% of survivors said they did not have the information they needed when they left hospital.

There are more than 38,000 stroke survivors in NI yet these figures are about more than just stroke, or stroke services. They cut to the core of problems with our entire Health and Social Care (HSC) system.

HSC is in crisis, a crisis that loomed for years and is now here. Furthermore, it was anticipated in  official reports, from Transforming Your Care to the Bengoa report to the last Programme for Government and resulting 10-year plan Delivering Together.

All of those papers drew up plans for change. Even if those changes were perfectly efficient, the nature of the required transformation is both so broad and so deep that the process could never be smooth. Unfortunately, reform is not smooth, it is stuttering.

The Department of Health’s Permanent Secretary Richard Pengelly has, in recent weeks, been astonishingly forthright about the need for change. Civil servants normally do not speak that way, even when it is warranted. This break from established norms shows how serious the situation has become.

Back to stroke, and the new research – one might expect the Stroke Association to be at loggerheads with officials, but this could hardly be further from the truth.

Transformational context

Barry Macaulay, Director of the Stroke Association Northern Ireland said: “It’s important that everyone affected by stroke in Northern Ireland can access the support they so desperately need. Over the last decade there have been significant advances in hospital based stroke treatment in Northern Ireland. While acute stroke services are developed and improved further, it is vital that rehabilitation and long term support for stroke survivors is given the same priority.

“We’re pleased that the Department of Health has committed to improving rehabilitation and long term support in their proposals to reshape stroke services and we urge them to implement the necessary changes as soon as possible. No stroke survivor should be denied the chance to rebuild their life.”

Those are words of support rather than conflict. That’s because the Stroke Association and the department are pulling in the same direction. Both want the same thing.

Transformation is needed because of the huge demographic changes Northern Ireland is undergoing, changes that are mirrored across the developed world and beyond.

More and more of us are living longer lives – which is great news, but means society is ageing and an increasing number of people have to deal with chronic conditions. The demands placed on health services therefore both change in nature and vastly increase. The only answer is structural change.

In Northern Ireland, reform of stroke services is top of the agenda. It is a flagship for the process of change. However, there are significant obstacles.

Any transformation this gigantic would be slow, no matter the circumstances. Northern Ireland has no government. Civil servants have limited power to make decisions.

Moreover, change comes with its own costs that run in parallel – meaning, in addition – to everyday services. However, the health department is already warning of a £20m shortfall for the coming year, and has no facility to increase its own budget.

A survivor’s story

The importance of getting services right is illustrated by the story of one NI stroke survivor.

Helen Graham, 49, from Richhill in Co Armagh was a teacher at a primary school before she had a stroke in November 2015.

Her life was busy and active but, after weeks recovering in hospital, she was forced to retire from a job she loved.

“It’s almost 4 years on since my stroke but I’m still struggling with the impact on my life. It’s not just physical, but mental and emotional too.

“I knew practically nothing about stroke believing that it only happened to older people. I did not know that stroke is a brain injury. When I first got home from hospital I found that I was able to do so little and I really struggled with that.

“The community stroke team visited me for a few weeks but when that stopped I felt very much on my own. Thankfully, I have a very supportive husband and family and that helped a lot.

“I’m not surprised that so many stroke survivors in Northern Ireland feel they haven’t received enough support to recover as I’ve met many people since my stroke who have struggled to access things like physiotherapy, speech and language therapy and counselling.

“Having a stroke is hard enough; we shouldn’t have to fight for the rehabilitation and support we desperately need to recover.”

What comes next

Talk about health transformation, and about structural reconfiguration, is inherently dry. It is worth remembering that behind all these abstractions are real people and real lives.

Stroke is perhaps better understood as a brain attack. It happens when blood supply is cut off to part of the brain, killing cells – and changing lives in an instant.

The effects can vary, and depend on where in the brain the attack takes place and how large an area is damaged. Each year around 4,000 people in Northern Ireland will have a stroke.

Mr Macaulay, the Stroke Association’s director, said: “Stroke turns lives upside down, robbing you of your mobility, your speech and often your independence.

“We know there are hospitals, stroke units and dedicated stroke professionals throughout Northern Ireland providing excellent stroke rehabilitation.

“But there are still thousands of stroke survivors across Northern Ireland being let down by the health and social care system when they leave hospital. This is putting people’s recoveries at risk.

“Surviving a stroke is the first challenge; recovery is tough, but it’s only possible when stroke survivors can access the range of support services that they need, and deserve, to rebuild their lives.”

This is why health transformation is so important, and why senior civil servants are being so blunt about the need for change.