Jonathan's Mum sitting outside next to flowers

‘I wanted to look after Mum, but spent years wrangling with an unfair system’ - Jonathan's story

It was devastating for Jonathan to see his mother’s decline after she was diagnosed with mixed dementia. But the fight he faced for his mother’s care was even worse. After she sadly passed away, Jonathan is calling on Government to keep its promise, and rebuild the social care system.

My mum, Gillian, was a fantastic woman. She cared so deeply about every aspect of her family’s lives and was there for us at every twist and turn. This includes caring for my dad, who lived with dementia and a myriad of physical conditions.  

Following Dad’s death, I had hoped that Mum would have an ‘Indian Summer’ with the opportunity to do all the things she’d not been able to do during years of caring for her husband. Perhaps she could have gone to those countries she’d always wanted to visit, continued her studies with the University of the Third Age, and spent more time with her family and friends, all of which she loved. 

But in 2014, after my repeated pleas to her GP triggered by my concerns and those of other family members, Mum was diagnosed with dementia as well.   

‘What followed Mum’s diagnosis, sadly, shows the failings of a social care system that needs to be urgently fixed.’ 

After Mum's diagnosis

By the time the diagnosis was finally made, Mum’s dementia was fairly well-advanced.

After six months living independently at home, Mum’s condition had hit her language, making it hard to communicate with her. As a former Head of Modern Languages at a secondary school, words and linguistics were her passion. It was so cruel to see her unable to string a sentence together, knowing she, and her words, were still there but I couldn’t hear them. 

Jonathan's Mum and the Alzheimer's Society logo

Gillian worked as Head of Modern Languages in a secondary school, before dementia affected her communication

It was clear that Mum wouldn’t be able to live on her own for too much longer so my brother and I began the search for care homes in the villages close by.  But we hadn’t bargained on just how quickly we would need to move her.  Out of the blue, I got a call from the ambulance service. They had found Mum on her own, far from home, and by the end of the day, I had driven over to her home and we moved her in to a local care home.  

Sadly, this care home really didn’t work out for Mum. There were a number of bad mistakes made and my Mum didn’t get the level of care she deserved or needed. 

Coming to terms with Mum’s diagnosis and seeing the changes in her as she began to forget me was challenging. But it was even harder knowing that in the place where she should have felt safe and secure, she just wasn’t getting the care and support she needed. So, even though I knew the upheaval wouldn’t help her, we moved Mum to another home. 

Meeting Mum's care needs

The new home was excellent and the care she received from the staff was superb. She was really enjoying the new home and her new friends – even though she was convinced that the other residents were her pupils!   

Unfortunately, Mum’s dementia was progressing. She had a heavy fall breaking her leg in two places, and Mum forgot how to walk. She was unable to communicate, had little mobility, and soon became incontinent and unable to feed herself. 

To secure the care and support Mum needed and deserved, we began the process of applying for funding - a process that should be simple for those in a period of crisis. 

Initially, we were faced with a six-month wait for an assessment after referrals and delays slowed the process down. At the end of the assessment, the assessor told me that Mum should receive some financial support and even that she would recommend it be back-dated due to the delays in processing the application. 

After waiting and waiting for a formal response, I was told that the assessor’s report was never filed due to an administrative mistake. The review team, who hadn’t assessed her or seen her in person, consequently, went against the assessor’s recommendation and rejected her application. 

At least three expert assessors have said that Mum’s condition merited financial support for her nursing care, yet after paying for an independent consultant, Mum’s case was once again rejected and the same conclusion was also drawn a year later.

Jonathan and Gillian

As Gillian's care began to exhaust her life savings, Jonathan spent years fighting for support

‘While I knew that her care would be expensive, I was not prepared for quite how expensive it was.’  

With Mum and Dad both working as teachers, they had saved up as much as they could for their future and care needs, but it was not enough. My brother and I soon needed to rent out Mum’s home. But one month’s rental of her home, covered less than one week of care home fees.  

As we could see that her care home fees were rapidly exhausting her savings, we had to sell Mum’s home. With the support of the funding allowance, Mum’s care would have been cost neutral, protecting her home and her assets. But now, we not only face the financial cost of care, but the human cost too. 

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For loved ones such as me and my brother, the care system left us confused and ill-supported to navigate the choices both we, and Mum, had to make, and access the care she so desperately needed.   

Battle after battle, I felt worn down – why was accessing a system put in place to support people in a time or need so difficult? 

‘It was a truly, truly awful experience’

My mum passed away in January 2021, just two months before the latest appeal rejection. But until things change, a dementia diagnosis will continue to claim more than one life, as the families facing dementia feel its destructive effects.  

Why the care system needs to be cured

At a time when all I wanted to do was look after Mum, I spent several years wrangling with an incompetent and ultimately unfair system. We experienced failing after failing in our fight to get support for Mum, and even now, as we learn to live without her, the process to secure the appropriate support that she deserved is still ongoing. 

I should not have had to fight for care, it placed a great strain on me and my family, and it doesn’t have to be this way. 

In his first speech as Prime Minister, Boris Johnson said, ‘we will fix the crisis in social care once and for all.’

I am simply asking the Government to keep its promise. Making the legacy of this pandemic the long-awaited Government plan to rebuild a social care system we want to grow old in – now and for future generations. 

Mum deserved this, I deserve this, and so do thousands of families just like ours. Because while dementia isn’t curable yet, the care system is.   

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This blog was originally published on 17 May, and updated on 24 May to better reflect the nature of Jonathan’s funding claim.

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12 comments

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My mother passed away in February after several years suffering from Dementia. Everyone has different symptoms but having to watch as your parent slowly slips from you mentally then finally physically is an awful experience. You feel helpless watching them deteriorate slowly. My sister and I promised Mum she would stay in her home till the end so we found a care company who supplied a live-in carer - at a price. The years passed by, all her savings were spent and eventually the Council took over the payments. Finally she became confined to bed, we just couldn't cope and found a nursing home. Three weeks later she was gone.
I think the whole care system is broken. Elderly people are being "ripped off" by unscrupulous companies who say they are doing the best for them. We paid nearly £1500 a week for a bed in a home, that's just disgusting. What is the point of saving all your life, expecting the money to pass to your children then having to spend it all plus losing your property for care in old age? Something is very wrong.

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You have my deepest sympathy, in 2016 my mother was diagnosed with dementia . We had to sell her house to pay for her nursing care. The first Care home did not meet her needs. I moved her too were I had worked as a nurse for nine years. After two years she ran out of money she was assessed and was deemed to have capacity so consequently the council moved her to another Nursing home in 2020 a week before lockdown. She has deteriorated so much this last year... Ultimately the care system is very unfair.

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What we go through as families when our loved ones suffer this appalling illness is truly heartbreaking - we experienced total lack of care and support - as I noted in my email to my MP ( just sent ) as a family we became immune to shock and very much hardened to life throughout mums illness , pushed to breaking point and left devastated on so many occasions .

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The whole system is totally unfair.

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Heavy fall , leg fractures - presumably in hospital for treatment ?? If so, then - given the individual's circumstances - the relevant CCG was, at the time of hospital discharge, responsible for ensuring that a NHSCHC assessment was undertaken under regulation 21(2) SI 2012/2996. Until such time that the individual is held by the CCG to be ineligible for CHC (whether by Checklist or full assessment) then it (i.e. the CCG) is responsible or funding her care.

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It is important for people to understand that eligibility for NHS Continuing Healthcare (CHC) must be considered, and a decision made and recorded (either at the Checklist or DST stage), prior to any decision on eligibility for NHS-funded Nursing Care (as outlined in the National Framework). It's not clear from the article how the payment of FNC (currently £187.60) would result in care being cost neutral? FNC is also often awarded when CHC has been unlawfully denied.

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Hi Andrea,

Thank you for your comment and for highlighting some of the errors in how the funding was defined and rewarded. As you will see we have made some changes to Jonathan’s blog. There are definitely inconsistencies in how funding is allocated and named, and we don’t want to distract from the issues at play – that the system and it’s processes do not work for all and should not vary based on where someone lives.

Thanks again,

Alzheimer's Society blog team

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I’m not sure FNC funding would have helped much. It’s around £170 a month and is almost always paid directly to the home ( so doesn’t come iff the fees). It was CHC funding she should have been assessed for. You could still ask for a retrospective assessment to be done.

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It’s £187 a WEEK not a month

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FNC is £187 a Week and yes it comes of the bill so please ensure when you ask the care home to quote a price for the room that it specifies the cost AFTER the FNC is taken off .

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Another heartbreaking tale, and condolences to the family. But was the assessment not for CHC - NHS Continuing Healthcare? FNC (Funded nursing care) is (nearly) always paid direct to the Nursing Home and would not make the eye watering bills cost neutral as at present it is only around £180 / week?

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Hi Anne,

Thank you for your comment and for highlighting some of the errors in how the funding was defined and rewarded. As you will see we have made some changes to Jonathan’s blog. There are definitely inconsistencies in how funding is allocated and named, and we don’t want to distract from the issues at play – that the system and it’s processes do not work for all and should not vary based on where someone lives.

Thanks again,

Alzheimer's Society blog team

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