Lack of advice upsetting
A Nelson man says people who have had strokes are being ignored.
The Nelson Marlborough District Health Board this week issued an apology to Peter Chapman, 75, after he complained of feeling overwhelmed by red tape and "weasel words" while trying to negotiate care for his wife, Anne.
Mrs Chapman suffered an occlusive stroke in June 2011, when she was 73. As the couple were holidaying at Moetapu Bay in the Marlborough Sounds at the time, help did not arrive until eight hours after the event.
"We actually argued about it at the time, she can be quite stubborn," he said. "She said she hadn't had [a stroke] and I said, ‘I think you have because your mouth has dropped in one corner'."
Coming shortly before the couple's golden wedding anniversary, the stroke opened the door to an unfamiliar and bewildering way of life for them.
Mrs Chapman spent two weeks being assessed at Wairau Hospital before being moved to the Assessment, Treatment and Rehabilitation (ATR) ward at Nelson Hospital for a further two weeks. She now lives permanently at a rest home in The Wood, which her husband is satisfied with.
Mr Chapman, a former accountant, has found the ordeal tough. After his wife was discharged from hospital, he felt ill-equipped to make decisions about her care and considered himself poorly supported by the health system.
"It's a whole new territory for me because I never had anything to do with [stroke victims], and all of a sudden bang! In a flash, your life has changed. It's bloody dramatic. Where do you go? No-one gives you any advice."
Mrs Chapman receives a residential subsidy from Work and Income but no pension, and the couple were turned down by ACC when they applied for funding to cover ongoing care.
Mrs Chapman's treatments have included acupuncture, therapy from private neurophysiotherapist Shannon Tisbury and hydrotherapy, but all have had to be abandoned for different reasons.
Mr Chapman said any kind of rehabilitation was expensive, saying thousands had been privately spent to make her more comfortable. He was desperate to do everything he could for her, but found it difficult to get advice on what options were out there.
"She's my wife and I've got to do my best for her, but what is the best? How do you define it? I don't know."
Mr Chapman complained to the Nelson DHB about the lack of support in October 2012, and then just before Christmas received a letter that said they needed more time to consider his objections. In early 2013 he got a letter from a different person to the one he had written to.
He said it "largely regurgitated" what had happened, but did not answer his questions.
"What's going on? No apologies, no positive outcomes, or directions or anything. It's like going down a road with no signposts, you don't know here you're going."
He had the opportunity to take his case to the health and disability commissioner, but found the prospect of ongoing red tape too daunting.
NMDHB chief executive Chris Fleming said that when he reviewed Mrs Chapman's file, it was clear she received access to a significant level of services, saying this was to be expected from the health issues she faced.
He said stroke patients who went through ATR were looked after by a multidisciplinary team who met to organise community follow-up with the family prior to discharge.
Mr Fleming said that in Nelson, this discharge meeting would include input from the hospital's community rehabilitation team, which organised home visits from physiotherapists, an occupational therapist, a social worker and outpatient services.
The community rehabilitation team would provide continual rehabilitation until the patient was transferred into a maintenance programme. For patients like Mrs Chapman this meant a physiotherapist would be contracted to the rest home.
Mr Chapman said he recalled his wife's discharge meeting, but felt it had been more of a token gesture than a genuine commitment to ongoing care.
"It's faceless people sitting around a table and everything's over and they're out the door. I rang up the woman and she said, ‘You've had your family meeting', and that's the end of it."
He said a hospital physiotherapist visited Mrs Chapman's rest home only "once in a blue moon".
Mr Fleming said the burden of people affected by major unexpected health events was often compounded by the complexity of navigating the health system. Both these health events themselves and the uncertainties by them challenged both the patient and their loved ones.
"We apologise to Mr Chapman for leaving him in a position where he felt we were not listening to his concerns and providing answers to the issues he raised."
He said the board was working to make it easier for people like Mr Chapman to navigate its services, saying stroke services were a priority in this year's annual plan.
He said the biggest issue with improving the system's user-friendliness was how to involve patients and the community in the DHB's planning and arranging the services it offered.
Mr Fleming repeated that this was very challenging, saying its response to the issue would evolve over many years.
"While there will always be improvements that can be made in the health system from a clinical perspective, ensuring that services are patient focused and that we have information which can be communicated in a manner in which the recipient and the wider community understand is a huge challenge."
The Nelson Mail