Half of Northern Ireland stroke survivors feel abandoned afterwards

A stroke or ‘brain attack’ is the third biggest killer in Northern Ireland and the leading cause of adult disability.

The report, ‘Struggling to recover, life after stroke in NI’, was developed in partnership with the Stroke Association and Dr Niamh Kennedy a neuroscientist at Ulster University with a specific interest in stroke recovery.

The research found that stroke survivors in Northern Ireland receive approximately one-third of the recommended 45 minutes of physiotherapy, occupational therapy and speech therapy per day.

A key finding was that 45% of stroke survivors feel abandoned when they leave hospital.

One survivor, Rosemary Brown, suffered a stroke in 2017. While she was grateful for the great care she received in hospital, she said he felt lost when she was sent home.

“I didn’t know where to turn and felt a bit abandoned for a few weeks.”

She added: “My brain had just had the biggest shock of its life and I was feeling shell shocked.

“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.”

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Ms Brown added: “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.”

Ahead of the upcoming public consultation on reforming hospital stroke services, the Stroke Association is calling for the creation of an appropriately funded regional stroke pathway to reduce the postcode lottery of stroke care and help all stroke survivors to make the best recovery they can.

Ursula Ferguson, head of stroke support at the Stroke Association, said rehabilitation and long-term support for stroke survivors has “long been identified as the Cinderella of stroke services”.

“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,” she said.

“No stroke survivor should be abandoned.”

The conclusions of the new report were based on research drawn from 305 stroke survivors, 75 of their carers, and 101 professionals who work in stroke services.

The report was also based on findings from 142 individuals from the charity’s voluntary stroke support groups. The figure relates to separate unpublished research which was carried out by Trevor Gill Associates on behalf of the Stroke Association in April 2018.

The unpublished survey, ‘Self expressed needs of NI stroke survivors and carers’, revealed many of the same findings as the latest report, particularly regarding gaps in emotional support, help to get back to work and support for carers. The findings were used to apply for funding for more support.

The proportion of first-time strokes suffered by 40 to 69-year-olds rose from 33% to 38% in England from 2007 to 2016.

The Act FAST campaign calls on people to phone 999 if they spot signs of stroke in the face, arms or in speech.

Every year around 4,000 people in NI have a stroke or mini-stroke, and there are around 1,000 stroke related deaths. There are more than 37,000 stroke survivors in NI.

• 33% of survivors have communication problems

• 54% of survivors say they often or always feel anxious and worried

• 50% often or always feel depressed or have a low mood

• 67% do not feel their physical needs are well met after hospital

• 85% of carers do not feel prepared for their loved one coming home from hospital

• 98% of carers say they find it sometimes difficult to cope

• 28% of carers know who to contact if they need more help

• 25% of strokes happen to people under 65

A stroke can affect memory and thinking, vision, speech, swallowing, arm and leg strength and balance, bowel and bladder control, pins and needles, muscle and joint pain, numb skin.