A husband says he felt “completely forgotten” during a six month wait for a carer’s assessment after his wife was diagnosed with a rare brain condition.
Danny Snoek, from Rochester, described feeling “very anxious and stressed” at trying to get care for his partner Christine, who is living with Progressive Supranuclear Palsy (PSP).
The rare neurological disorder, which displays similar symptoms and is often mistaken for Parkinson disease, affects balance, movement, vision, speech and can cause issues with swallowing.
There are no treatments or cure for the condition at present.
In 2022, Christine’s symptoms progressed, and she began falling more frequently - which was when Danny knew he needed help.
“You’d just suddenly hear a horrible thump, and you couldn’t rush there fast enough to find out how serious her fall was,” he said.
“She was also diagnosed with osteoporosis, so my biggest fear was Christine falling and breaking a bone and possibly needing to be hospitalised.
“It was a very anxious and stressful time as I felt I couldn’t leave her alone for more than half an hour or so.”
Danny was referred for a carer’s assessment by a nurse at his GP surgery, but it was months before his application was even acknowledged.
He added: “You feel completely forgotten and worry if the process is working properly as you are not even sure you actually are on the list – then out of nowhere they ring and say they want to come around and see you.”
It still took a further three months for the couple to be visited, and this was after being supposedly fast-tracked due to Christine’s symptoms worsening.
A Medway Council spokesperson said: “We cannot comment on individual cases, however it is well documented that Adult Social Care is facing significant challenges nationally.
“The Association of Directors Adult Social Services (ADASS) Autumn Survey Report 2023 states that the number of people awaiting an assessment of their needs, care or direct payments to begin or for a review of their care plan has increased by 8% since March 2023, with around 470,000 people waiting.”
During the wait, Danny had to fork out privately for a personal assistant (PA) to help.
But even then the doting husband felt the support wasn’t great as he had to keep telling them what to do, and what things Christine needed help with.
After finally receiving the assessment, Danny has now finally obtained support in the form of Emma, a council funded PA.
He said: “It was a relief – I was finally told I was entitled to nine hours a week support, which would give me some much-needed respite care.
“At the moment this level of support feels like enough, but I know the time will come when more support is needed.
“When things begin to change, I will be quicker at reaching out for help, knowing how long it took to receive a response the first time around.”
Now, with the help of PSPA, a charity dedicated to helping improve the lives of people living with the same condition as his wife, Danny is calling on the general election candidates to improve support for unpaid carers.
It comes as part of the PSP awareness week which began on June 17.
According to Carers UK, on average, unpaid carers provide 26 hours of support to loved ones a week, and 72% of them say they’re worried about their finances.
The campaign is asking for an increase to the Carer’s Allowance, to introduce a new payment for older carers, give carers a legal right to respite breaks, and improve how carers are treated by our health and care system.
