Strong Voices

Veronica Kennedy lit up every room she was in. She loved to party, sing and dance even though she was dealing with a range of serious health conditions.

When Liam Searson took over as Service Manager at Veronica’s IDEA Services home in Henderson, Auckland, he wasn’t sure how he would get on with older people with intellectual disabilities. He had previously worked with autistic children.

He had yet to encounter Veronica. “She was in her late 70s when I met her, and she was the life of the party. She was a born performer,” Liam says. “She should have been in Hollywood. If she liked you, she was lovely and absolutely charming. But if she didn’t like you, you would know it.”

Luckily for Liam, Veronica liked him and for the next five years she singled him out for special attention – and expected some special attention in return. “Veronica was a huge reason I enjoyed managing the house,” he says.

Her ability to act the part of a dying woman during one hospital stay had staff convinced the end was nigh, until one of her support workers paid a visit and Veronica sat up in bed, much improved.

But the good years were coming to an end. In 2021 Veronica’s health worsened and she spent a lot of time in hospital and doctors’ surgeries.

Liam says her arthritis was causing her debilitating pain. She had constant nausea and vomiting and was losing weight. “The early months of 2022 were really horrible for her – a lot of anxiety and pain. It was really hard as non-medical professionals giving her any kind of support that would alleviate the pain.”

He says her health was in such a poor state that staff were constantly taking Veronica to hospital and GPs without much improvement.

The IDEA Services team were working alongside her GP and practice nurse, community occupational therapist, physiotherapist, dietitian and community nurse, but there were barriers to Veronica getting the help that would make a difference.

Referrals to pain specialists were declined on the grounds that her intellectual disability meant she wouldn’t be able to engage cognitively in the pain-management strategies. A referral to the Older People’s Health Service was also declined because issues seen as related to recent surgery had to be managed by the surgical team.

Liam says Veronica did not have enough time with doctors at the local GP practice or during hospital admissions, and she was discharged early from hospital when she was not stable. There were long waits at outpatient clinics and to see community specialists, and a lack of understanding from medical professionals about the level of clinical knowledge and oversight in IDEA Services residential homes.

In the end, with support from the IDEA Services National Clinical Team, Veronica was referred to hospice services in March 2022. An initial assessment by a hospice doctor was followed by an intensive in-patient review.

“It was a positive experience. They really overhauled all her medications that weren’t really needed any more. She was only in there three days, and it was a miracle getting her pain under control and her nausea under control,” Liam says.

“She had her 83rd birthday at home and she was happy there and we had her family around. Even the week before she died she was out shopping – fish and chips for lunch.

“Veronica enjoyed being cared for at home, with family and friends visiting regularly, and with her support workers who knew her well and who she knew and trusted. I was a very small part of her care. I wasn’t the one with her all day and all night – that was the support workers; they were amazing.”

Then suddenly Veronica became acutely unwell and had to be taken to hospital, where she died. “Everyone who knew Veronica misses her,” Liam says. “She was just so fiery with such a lust for life.”

Veronica died in June 2022 and her family have given permission for her story to be a case study in the new palliative care learning module for support workers.

Caption: Veronica Kennedy’s struggle to get good end-of-life care from health services is featured in a new palliative care learning module for support workers.

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