Son of dementia sufferer tells of ‘kafka-esque’ bureaucracy of trying to secure social care funding

The son of a nursing home resident with dementia who had to sell her home to pay for her care has criticised the “kafka-esque” bureaucracy around trying to get financial support.

Jonathan Freeman said “any possible excuse” not to provide his mother with the financial support she was entitled to was given when they applied multiple times for state assistance.

The former senior civil servant called the process “utterly outrageous” and said he had not wanted to spend her last months worrying about her finances.

Mr Freeman and his mother, a former head of modern languages in a state school, went through two assessments where her eligibility for some financial support was agreed, only to be rejected further down the line.

Two months before their last appeal was rejected, his mother died, he told the Health and Social Care Committee.

Mr Freeman said it is morally inexcusable for families’ suffering to be compounded by anxieties over care and funding.

He told MPs: “The whole process is utterly outrageous, no support was provided whatsoever for Mum, I had no choice but to sell her home to make sure that we could continue to pay those fees, and… two months before they rejected the appeal, so in January, Mum died, quite clearly with needed funding support.

“So just a harrowing experience, and as I’ve said, I wanted to be there to support my mum.

“I did not want to have to spend my time worrying about her finances and arguing with bureaucracies, for what I think should just be a basic right.”

He added: “It struck me as a very, very obvious tactic that you refuse as many as you can, and you then make it as difficult as you can to appeal, on the basis that most people aren’t as stupidly determined as me to actually pursue it and will just give up.”

Mr Freeman said he hopes the Government honours the promises it made at the start of its administration, when Boris Johnson stood on the steps of Downing Street and said he had a plan for social care.

Properly funded reform would enable people like his mother get the help they need and ensure family members do not have to “spend wasted years arguing with a bureaucracy that’s trying to dodge the bullet”, he said.

Also giving evidence was John O Doherty, who was diagnosed with vascular dementia five years ago and lives at home with his wife.

He told of how the disease turned him from “the person to go to, to the person to avoid” at his job in a finance department in a local authority.

He starting struggling to remember the names of colleagues he had worked with for years, leading to him withdrawing from conversations.

Mr O Doherty said getting his diagnosis after a number of years with concerns allowed him to move on with life after feeling he had “not been listened to at all”.

He said: “The actual diagnosis to me was vindication.

“I had dementia, the warning signals were there, I knew people who had dementia, and I felt I had just not been listened to at all.

“Being given that diagnosis… I could move on with my life, I could make decisions.”

He said due to his experiences he has “completely lost faith and trust in what is considered the conventional care system”.

Committee chairman Jeremy Hunt said he was not sure if a person with dementia has ever given live evidence to a select committee before, calling this “incredibly brave”.

Fiona Carragher, director of research and influencing at Alzheimer’s Society, said the charity hears similar testimony “day in day out”, adding: “It’s just so hard to really navigate what is such a complex system to get any support, information or guidance.”

Caroline Abrahams, charity director at Age UK, said a lot of the bureaucracy of the system is “defensive” batting away of demand and costs, which is a very common experience.

She continued: “So actually, if people didn’t feel the need to safeguard their resource in quite such a vigorous way because they’re so broke, then I think we would find behaviour would change, but we would need to incentivise that as well, and part of that might be by giving people more rights than they have at the moment.”

Copyright (c) PA Media Ltd. 2021, All Rights Reserved. Picture (c) Parliament TV.