Living the stroke experience: NIMAST 2016
I was part of a five-member panel of stroke survivors and carers who presented short stories of our perspectives, to an audience of delegates at the fifth Northern Ireland conference organised between the Northern Ireland Multidisciplinary Association for Stroke Teams (NIMAST) and the UK Stroke Forum (UKSF), held at La Mon Hotel, Belfast.
Our session was titled, “Living the Stroke Experience”, and sought to deliver key messages coming from the recently expired public strategy on stroke services. An overview was provided by Fiona GREENE, from the Northern Ireland Chest Heart & Stroke (NICHS) charity.
I started by describing my naivety about how soon I would be able to return to an ordinary routine, after Beverley’s discharge from the Regional Acquired Brain Injury Unit (RABIU) at Musgrave Park Hospitals.
Within a couple of weeks, I realised that the private care provision was not going to practically assist in Beverley’s recovery. I called a meeting with the care provider, whose manager told me, “We don’t do mobility.”
Thankfully, I had been invited to attend Beverley’s physiotherapy sessions at RABIU, where I learned techniques such as open hand walking support and safe transfers in and out of automobiles.
Once Beverley became stronger, after about a year, I succeeded in negotiating with the health trust to exchange some Beverley’s personal care provision for personal assistance.
A personal assistant is a care professional who comes out to accompany and supervise activities directed by the client.
For Beverley, this meant someone to watch her iron clothes, for example, or to go for short assisted walks in a nearby park.
This was the best action that I took to aid her recovery.
I was then able to start spending more time looking after myself, and participated in some support groups.
At one session, I lightly moaned about how signposting information for carers could have been better. A fellow carer replied, “You were signposted?”
Indeed, this underlined how much more attention is required to those who will be looking after their loved ones.
I never received any carer’s brief, offered a plan, explained any pathway.
I have before described recovery from traumatic events as a team effort, with a group of professionals working together to enable the best possible outcomes.
But it appears to me that no one has responsibility for the carer’s wellbeing.
We rely too much on the self-resilience of the carer.
In sum, I highlighted the value of identifying an appropriate family carer, and to include that person in the rehabilitation process. That family member will be able to assist in the recovery of the stroke survivor more than any private carer.
It would also help to brief the carer, and even better if a carer’s health and wellbeing pathway could be devised, with sufficient services and support.
I handed over to Lisa, who described how she had her stroke when she was ten weeks pregnant with her second child.
At the time, she was healthy, running even. Lisa said that public information campaigns need to go beyond stroke prevention through good health, to explaining how a stroke could happen to anyone.
Lisa accepted that she may not have been ready to receive a full debriefing of what happened to her in the acute stages of recovery, but neither she nor her family has ever received one.
She was very thankful for the ongoing support provided by NICHS and the Stroke Association, and she handed over to Chris.
Chris had a stroke at the age of 24, one week after the birth of his son Ashley.
He described how hard he has worked on his speaking skills.
Although he has been unable to return to work due to the physical impacts of his injury, he thanked the Cedar Foundation for their support and services.
But he only learned about other voluntary sector support services by chance, through a neighbour who also had a stroke. This was some years after Chris’s own injury; he reflected on how much better off he might have been if he had learned earlier what was available.
Chris is a walking demonstration of confidence; he has come a long way. Indeed, he is now assisting a stroke survivor support group in South Down.
Leanne described how her husband, Daniel, had a stroke two years ago, at the age of 37. He still has aphasia and suffers from fatigue, which affects their family’s ability to plan events together.
She argued for more support for stroke survivors, but added that there should be a pathway for carers too:
“From my perspective, the stroke happened to me too!” Leanne said.
The final guest speaker was Clodagh, who had a stroke at age 35.
Clodagh presented her harrowing perspective of being in locked-in syndrome, with examples of how she was aware of her surroundings and everything that everyone was saying around her, but without any way of communicating with anyone.
She also described the intense waves of pain that she experienced, contorting her body and with her pleading with God to let her die.
“I argued with God because he was the only one listening,” said Clodagh.
Thankfully, God did not accede to her request, and Clodagh is making a most remarkable recovery. She has regained her speech — demonstrated superbly today — and has recently walked a full mile.
Clodagh urged the audience to not think of older people when you say the word “stroke”, but instead think of the words “brain attack” and how, like a heart attack, it can strike anyone of any age.
To wrap up the session, Catherine LOWRY, from the Stroke Association, reviewed key messages with the audience, which included:
- Increase awareness of long-term needs of younger stroke survivors
- Brief carers and include in recovery process
- Address the psychological impacts of stroke
- Remove barriers to referrals to voluntary sector
- Devise a singular stroke pathway for Northern Ireland (not five), plus a carer’s pathway
- Implement an updated stroke strategy
I was honoured to take part in this exercise, and humbled by these inspirational stories of stroke survivors and carers.