Like thousands of grandparents across the country, George Herd sadly died aged 75 last year after testing postive for Covid.
His family take great comfort from the knowledge he was happy in a specialist dementia home where staff really cared.
But the previous decade, they say, had been a battle for support from a care system they claim is ‘broken’.
For George, a retired auto-electrician and dad of four, the signs of dementia started in 2010, shortly after the death of his wife Linda.
At first he stopped being able to tell the time. He tried to get out of the car with his seatbelt on. He struggled to follow simple instructions.
Aged 65, these warning signs soon added up to a diagnosis of vascular dementia. Three years later, this warm, caring family man who loved horses, his garden and Manchester City football club, could no longer dress himself.
Two years after that George had forgotten the name of his daughter Victoria – although even when the disease was at its most brutal he never lost the knowledge his close family members were special to him.
With George’s diagnosis came the start of the family’s fight to get him the care he needed, but Victoria says she knows there will be thousands of dementia patients who don’t have that support.
Following the Queen’s speech in which only a fleeting mention was made of the Prime Minister’s promise of social care reform, Victoria told the Manchester Evening News :” I get we are in the middle of a pandemic and there are cash holes.
“My dad had us to fight for him but there are are those who don’t have anyone at all and that breaks my heart that they are reliant on a system that is quite clearly broken.
“We were in a lucky position where I’m vocal and don’t take no for an answer. It scares me the amount of people out there who will just take what they are told because they believe social services know better.
“If this helps one person get the support they need then it’s worth it.”
Care at home
There are 850,000 people aged over 65 in the UK living with dementia and 28,658 of those patients are in Greater Manchester.
And like George’s family, many face a fight to get the right at-home care for their loved one.
Victoria, 42, her husband were determined that George should stay in his home in Partington, Trafford, for as long as possible.
But sadly, they say the social care system worked against them.
George’s condition meant he suffered ‘mini strokes’ or TIA’s. The family say they could only secure Government funding for three 30-minute slots of care a day, at breakfast, lunch time and dinner time.
They would find George dehydrated as the carers weren’t prompting him to drink.
He was not eating as food was placed in front of him and he didn’t know what to do with the food.
His personal hygiene suffered as no one was making sure he had bathed.
Victoria is not alone. In a survey of unpaid dementia carer by the Alzheimer’s Society, almost half (48pc) reported that they had performed tasks they felt unqualified to carry out because of a lack of support, and as a result, they reported three-quarters (72pc) of people with dementia having medical issues at home.
Victoria decided to start paying for home care.
She said: “It shouldn’t have to be on the family to have to pay for the correct, required care but what can you do? You can’t let the person you love and who bought you up suffer like that.”
Care in hospital
As time went on George’s condition worsened and he was suffering from more and more mini strokes.
In May 2018 he was admitted to a stroke ward in hospital, where staff assessed how to treat him.
Victoria has asked the Manchester Evening News not to name the hospital because her grievance is with the system – not the NHS staff who work so hard to care for patients.
Figures from the Alzheimer’s Society show emergency hospital admissions among patients with dementia rose by 27pc between 2015 and 2019.
And in 2019, nearly two thirds (65pc) of all emergency admissions of people with dementia were for avoidable illnesses and injuries like falls or missed medication, caused by failures in care.
While an increase in the number of people with dementia has contributed in part to the rise in avoidable admissions, much of the increase is thought to be due to cuts in spending on adult social care , piling pressure on A&E and ambulance services
“Every time a patient like my dad has a small stroke it takes another part of them – communication, another skill,” said Victoria.
“He went from being active on the Wednesday to being in hospital on the Thursday and he’d gone completely within himself, like a child who knew he was going to get in trouble for something.”
Victoria is keen to stress that the medical staff who treated George were brilliant, but says they are working in a system that does not provide support for patients like George.
The ward staff struggled to support George, whose behaviours included aggression and agitation.
There were other gaps in his care. His food was not being chopped up, he was given sandwiches in boxes that he could not open.
On one occasion George was given a spoon to eat a baked potato.
Victoria added: “It’s broken to thie point where nothing is joined up.
“We’ve had a pandemic and medical staff are amazing, they are exhausted and they have done so well. But where is the support they need when they have people on the ward with conditions like my dad’s? There should be specialist support on these wards.
“It’s not a dementia unit, there are critically ill patients on life support machines.
It meant, said Victoria, staff relied on her to make sure George took his medication – including sedatives.
“Some days I would get home and they would be back on the phone saying I needed to come back. I would never resent that – he’s my dad and I’d never want him to feel distressed – but it’s horrible for any family member especially if you are working full time,” she recalled.
“The hospital had done nothing wrong, they just weren’t given enough support to deal with someone with these behaviours. The nurses and doctors didn’t have time to sit with someone for an hour to make sure they ate, to convince them to take their tablets..”
Accused of ‘bed blocking’ and threatened with court action
The family had already started to look for a care home for George before his admission to hospital – but now social services were involved.
They determined he did not meet the criteria for nursing care, instead recommending he needed only a basic care home.
Victoria said “We desperately wanted dad in a care home, but it needed to be the right one.
“Social services were sending me to care homes and I’d look around and see they had access to knives in the kitchen or ornaments that he could pick up and throw. We knew dad and we knew that these places would not be safe for dad or other residents.”
When George’s behaviour spiked on the ward – he attacked a doctor and caused the room to flood – social services tried to push the family to accept a home which, says Victoria, was under review for safeguarding issues.
When the family refused, they say social services claimed they were ‘bed blocking’ and threatened court action.
Victoria added: “It felt like they didn’t want to provide the funding required for the specialist home and wanted to put dad anywhere, in a place that wouldn’t have been safe for him or other patients and staff.”
It was at this point Victoria, who describes herself as ‘vocal, not a yes person and questioning’ called a meeting with the hospital and social services and demanded a new social worker be assigned to their case.
Hope at last
The new social worker visited her dad on the ward to observe his behaviour at meal times, during medication dispensing, at wash times, and during social times.
Finally, at the next meeting, it was accepted that George needed specialist nursing care, with two to one or one to one help.
“For me that was the best news ever because we knew now that we would be taken seriously and dad’s requirements would be put first.” Victoria recalled.
But when Victoria started applying for specialist dementia homes, her problems began again – as home after home refused to take George due to his challenging behaviours.”
“These homes get specialist funding to train staff and yet they were saying no,” says Victoria.
Finally, the social worker found a bed while visiting another resident, and Moston Grange Care Home accepted George in August 2018.
Victoria added: “I visited straight away and could see that the staff were loving and caring. When people were presenting with difficult behaviour they would distract rather than get exasperated. There were gardens which I knew my dad would love, especially when he felt distressed.
“For us at that point it was a lifeline, they accepted dad on the Wednesday and he moved in on the Friday.”
A home for George
Although confused at first, George soon grew to love his new home and the staff adapted to his ‘triggers’ – which often revolved around food.
“They actually cared about dad and cared about the support he needed. They wouldn’t sedate dad when he was having a bad day, they would use distraction techniques.
“Everything was safe and locked away. They understood his triggers like we did with his Vascular dementia.
“They understood that you couldn’t go near him with certain foods, they knew if he was having a bad day a chippy tea would sort it out.
“Dad told them he used to play for Manchester City and had them lined up in the garden doing football training.
“The home brought a twinkle back out in him, his old cheekiness. He had quality of life again.
“There really needs to be more money put into care homes like this that are specialist and genuinely care.”
But Victoria said the journey to that point had been arduous – in the main due to a social care system that is not fit for purpose.
She added: “These people haven’t asked for dementia, it’s a cruel and awful disease, both for them and their loved ones, to mourn every time you see that person lose a bit of themselves.
“I feel incredibly lucky that we found Moston Grange and that they were with him right until the end when he passed away with Covid. They were fantastic, I can’t thank them enough for their care. They made sure me and my sister could facetime dad and helped us get dad back into the care home for end of life care (after being admitted to hospital with Covid) when he was very weak. They wanted him to be comforted by the familiar voices he knew as we couldn’t be there due to restrictions.
“We feel so much for the team at the care home as we lost our dad, however they have lost several of their residents who they all treated like extended members of their family. For the care and compassion and love they gave to dad throughout his journey we will be forever grateful”.
Victoria wants to see the Government recognise the level of support that people with dementia need.
She added: “For me the biggest thing is that recognition that everyone is an individual and their requirements are completely different.
“People with dementia are mentally unaware of what’s going on but sometimes still feel they can do things so the biggest change needed is the right assessment. It needs to be recognised as a mental health illness that needs care and nursing.
“These people are stressed and confused. Keeping people in their homes as long as possible prolongs their ability to do things for themselves, but the right support should be given.”
Victoria says the Government also needs to take another look at specialist dementia homes.
She added: “All the ones we approached who went to hospital to review dad rejected him because his behaviours were too much for them.
“The Government are giving these homes specialist funding but they aren’t taking people who have the different varieties of dementia.”
What the experts say
The Alzheimer’s Society says interruptions to routine health and care services, along with isolation, have led to huge problems for dementia patients over the pandemic.
In the last month alone, Alzheimer’s Society has heard shocking reports of people with dementia losing the ability to walk, getting pneumonia, and being rushed to hospital with kidney damage from dehydration. All avoidable with quality dementia care.
Sue Clarke, area Manager for Alzheimer’s Society Greater Manchester Society, said: “Lockdown has left people with dementia in Greater Manchester cut off from vital support and care.
“Interrupted routines, loneliness and isolation have contributed to rapid symptom progression, meaning there’s now more people than ever fighting for scarce dementia care.
“ Decades of chronic underfunding and neglect have led to a care system that’s inadequate and deeply unfair – the pandemic has exposed these failings like never before. People with dementia have been worst hit, accounting for over a quarter of all deaths and many more rapidly deteriorating from lockdown’s knock-on effects; family carers are exhausted.
“The legacy of this terrible year must be a reformed social care system, which is free at the point of use and put on an equal footing with the NHS. We need a system that gives every person with dementia the support they deserve and so desperately need.”
A number of agencies were involved with George’s care.
A spokesman for Trafford Clinical Commissioning Group, Trafford Council and Greater Manchester Mental Health NHS Foundation Trust, said: “We would like to express our sympathies with the family and all our thoughts are with them following Mr Herd’s death last year.
“We would like the opportunity to meet up with the family to discuss any issues they have with Mr Herd’s care. We are always willing to listen to families if there are lessons to be learned.”
Gill Green, Director of Nursing and Governance at Greater Manchester Mental Health NHS Foundation said : “We offer our deepest condolences to Mr Herd’s family and those who cared for him. We would be happy to work with Ms Herd further, to hear her experiences and how we can learn from them.”
A Department of Health and Social Care spokesperson said: “We are committed to significantly increasing research funding to improve detection and care for people living with all kinds of dementia, and as part of our 2020 Challenge on Dementia, the government has already spent £344 million on dementia research in the past five years.
“Throughout the pandemic we have been working with the social care sector to ensure all recipients of care receive the support they need. We have provided almost £1.8 billion for adult social care including infection prevention and control measures, free PPE and additional testing and prioritised health and care workers and older care residents for the vaccine.
“We have pledged to improve adult social care to give everyone who needs care the dignity and security they deserve and are committed to bringing forward a long-term plan to reform the social care system later this year.”
As background, they added:
- The government’s manifesto made clear that we want a system where nobody needing care should be forced to sell their home to pay for it, but the reform of social care and its funding arrangements are complex areas and a range of options for how to deliver on this commitment are being considered.
- We are working closely with local and national partners to ensure our approach to reform is informed by diverse perspectives, including of those with lived experience of the care sector.
- We have given local authorities’ access to £6 billion to address pressures on public services, and are providing councils with access to over £1 billion of additional funding for social care in 2021-22.
- Last month we announced a £7 billion package for health and care services to support the next phase of the NHS response to Covid-19.
- The government’s 2020 Challenge contained the commitment to spend £300m on dementia research over five years. This commitment was delivered a year early with £344m spent on dementia research over the four years.
- Through our National Institute for Health Research, we have commissioned a range of research to support people with dementia during the Covid-19 pandemic, including the IDEAL study which produced evidence-based advice to mitigate the impact of Covid-19 on people with dementia and their carers.
- We provided financial support of £515,658 to Alzheimer’s Society to support their Dementia Connect programme. The funding supported their Dementia Connect telephone and on-line service which has been able to operate 7 days, providing advice, information and support for people affected by dementia. In total it has delivered over 40,000 interventions, ranging from whether visits were allowed in care homes to financial issues and general carers advice.
- We also provided financial support to the Race Equality Foundation of £485,000 to provide additional services to BAME communities with dementia.
- The money was part of a UK-wide £750 million package of support for the voluntary sector announced by the Chancellor of the Exchequer in April. £360 million was directly allocated by Government departments to charities providing key services to vulnerable people during the pandemic.
- The government’s current priority for adult social care and the focus for the Department is ensuring that all recipients of care receive the support they need throughout the Covid-19 pandemic and the winter period ahead, placing equal focus on the NHS and care sectors.