Counting the cost of stroke trauma

 

There is a high price to pay for the absence of a proper rehabilitation service for stroke victims, in both human and financial terms, writes ALANA KIRK GILLHAM

STROKE IS the third-biggest killer in Ireland, and the largest cause of acquired disability, yet five years ago there was not a single stroke specialist in this State.

A stroke occurs when the blockage of a blood vessel or haemorrhage stops the flow of blood to the brain, damaging or destroying brain cells which affect body function or mental processes.

Ten thousand people will suffer from a stroke this year and, unfortunately, 2,000 will die shortly afterwards as a result. Of those who survive, only half will make a full recovery.

Of the remaining stroke sufferers such as my mum (see below), 48 per cent will be left partially paralysed, 22 per cent will never walk again, 33 per cent will have difficulty understanding what is said to them, and 32 per cent will have depression.

These figures do nothing, however, to convey the utter devastation a stroke causes, not just for the person themselves, but for their entire family who have to care for them while grieving for the loss of the person they knew.

Yet despite the huge gains in stroke treatment over the past five years – and, in particular, rapid improvements in the past 12 months – Ireland still has one of the worst records in Europe for post-hospital rehabilitation care.

Chris Macey of the Irish Heart Foundation (IHF) explains: “Ireland currently has a ‘Cinderella service’ as far as stroke rehabilitation is concerned. It’s just not treated as important as other conditions.”

Yet a recent report, The Cost of Stroke in Ireland, presents a convincing argument, especially when the HSE is buckling under budget cuts, to invest in the proper post-hospital care and rehabilitation of stroke survivors and save millions to the taxpayer.

The report shows that while less than €7 million is spent on community care which enables survivors to be cared for at home (like the National Health Service in the North pays for my mum), the cost of strokes to the economy every year is more than €1 billion. In Ireland, the majority of stroke survivors who don’t make a full recovery end up in a nursing home at a cost of more than €400 million a year.

They are not being treated, merely cared for. Yet investment in community care and rehabilitation would not only save money but would improve the outcomes and quality of life for the sufferer and their family.

“Currently in Ireland, you have to be lucky to get anything like the service you need. For many, there is rehabilitation in the hospital but once they are discharged, there is no further contact and no rehabilitation available,” says Macey.

Often seen as an old person’s issue, it has never been given any prominence, yet a third of all strokes affect people under the age of 65.

According to Dr Joseph Harbison, consultant geriatrician and stroke physician at Dublin’s St James’s Hospital, the issue of stroke was not on our health system’s radar until recently.

“Five years ago, there wasn’t even a stroke specialist in this country. In 2007, we opened the first stroke unit in St James’s, and by the end of this year we plan to have a stroke unit in every hospital,” he says.

“With trained teams in place, we can reduce the instance of death by a quarter, if patients are seen as quickly as poss- ible after the first symptoms show. We can minimise the level of disability the moment they walk through the door.

“But we are at the beginning of a long process to improve the overall outcomes and care for people who survive strokes.”

Over the past five years, the National Stroke Strategy has focused on prevention and acute management. As a result, there will shortly be 28 acute stroke units in the State and a 24/7 thrombosis service in all 33 acute hospitals.

The first 24 hours are vital for patients to receive treatment, with the first six hours being critical. By the end of this year, acute management will be available throughout the State.

However, the remaining part of the jigsaw is getting rehabilitation started immediately, and this is where things are still falling short in Ireland.

Compared with the UK, Ireland is missing 200 specialist therapists. We currently have six rehabilitation consultants, and even if we had 50, we would still be second worst in Europe.

Improving the overall care of stroke patients requires reorganising the community care.

In the UK, patients are supported by a discharge team, which helps arrange care, rehabilitation and ongoing needs such as respite. This is not co-ordinated in Ireland, making caring for a family member extremely difficult.

A large proportion of patients end up in a nursing home because the support does not exist to allow family members to care for their loved one at home.

“One in five people in Ireland will have a stroke at some time in their life, and we now know they are among the most preventable and treatable of all diseases,” says Macey.

“But hundreds of people are living with permanent disability that is unnecessarily severe or prolonged for the want of community rehabilitation.”

The IHF’s recent FAST campaign which saw a 50 per cent increase in people presenting early to hospital, is an example,” says Macey.

“We can show that the campaign resulted in 100 people whose lives were saved, or they were saved from permanent disability.

“It kept 50 people out of nursing homes making a direct saving to the economy of €4 million,” he says.

“The FAST campaign cost half a million euro and we can’t afford to run it further. But there are no Government plans to take it up, so despite now providing excellent acute management service for strokes, no one is being told [about it].”

The most worrying aspect about the lack of services for stroke patients once they leave hospital is the future predictions. The average age of a stroke is 73, and over the next 10 years the number of people reaching that age will increase by 50 per cent.

With the system unable to cope now, and no concerted Government plans to focus on this area, what prospect do the families and patients have of offering any quality of life to their loved ones?

We have survived the first year of my mum’s post-stroke life, and begin our second.

Apart from the challenges of just being with her, trying to stimulate her, and give her some quality of existence, the emotional turmoil of watching the woman we all love live in a private, silent hell is horrific.

It impacts on us all every day, but we are lucky. Because she is in Belfast, the package available ensures we can care for her at home and access services to continue her improvement. For many people in Ireland, that option is just not available yet.

'Mum read our girls a story, walked out of their bedroom and, shortly after, her brain exploded'

I finished the phone call and smiled down at my newborn. My mum was so excited about me bringing her home the next day, and she was just off to put my other two daughters to bed, before settling down with a glass of wine and the crossword.

I knew she’d be texting me later with clues for 14 up and 22 down. But no texts came. Instead, my husband came. He walked into the maternity ward and changed my life forever.

Mum had read our girls a story, walked out of their bedroom, and shortly after, her brain exploded. Just like that: an instant to end a life as it was known, to change many lives, to enter a new life of endless grief and turmoil.

For two weeks she lay in St James’s Hospital unable to speak, move or eat, and doctors told us to prepare for the worst. They meant death of course, but she survived and the worst was still to come.

My mum is a shadow: her image, but with no voice, control or colour.

She was a vivacious, warm, glamorous 74 year old with an exhausting social life, walking every day, water aerobics twice a week, knitting, cooking, crosswords. Even though I am mother to three, she still mothered me, helping out, listening on the phone every day, giving advice, living for her grandchildren. Now she cannot even say their names.

The impact on us as a family has been catastrophic. Mum held us together. She was the lynchpin that always pulled us back from the various places we had settled, the grandmother who doted on her six grandchildren, the voice who kept us all aware of how much we were valued and loved.

We lost all that the night she had her stroke, and for a long time were left to love and care for a stranger who had no past – she could not recognise people in photographs – and no future – no curiosity about our lives, no sense of anticipation.

She lies in bed 20 hours a day, and despite my dad’s valiant efforts with flowers and window boxes, it is no life. For a few hours, she sits in the kitchen and sometimes we take her round the park in her wheelchair.

The degradation of being paralysed and incontinent, having people change her, being hoisted in the air in a large plastic sheet to be put in a wheelchair, to have her right arm twisted and limp beside her, to be unable to say what she thinks and contribute to her family’s life, is utterly devastating to watch.

My dad’s life is restricted beyond measure, making sure the meds are done, feeding her through a tube in her stomach, making sure the endless demand for clean sheets and nightdresses is maintained.

My brother and I both have young families and live away, but travel over at weekends to give her company and let my dad get out.

We try to make the best of her life – sending her letters and photos, playing her music. She loves watching the children play, and her friends spend their time and love on her.

It is a shadow of the life she had, lifeless, empty and blank, and we all live in the shadow of her stroke.

But we were lucky. My mum was not dependent on the Irish health system. We transferred her home to Belfast where she has a homecare package that allows us to care for her there.

Patient charter

To mark Brain Awareness Week (March 5th-11th), the Irish Heart Foundation has launched a new stroke patient charter. See stroke.ie