More than 4,000 in Wales demand reform of ‘costly and deeply unfair’ social care system by signing Alzheimer’s Society petition

More than 4,000 in Wales demand reform of ‘costly and deeply unfair’ social care system by signing Alzheimer’s Society petition

More than 4,000 people across Wales have backed Alzheimer’s Society’s petition calling on the government to Cure the Care System – and several Members of the Senedd have given their support to the campaign.

The petition urges the government to fulfil its promise to ‘fix the crisis in social care once and for all’ made by Mr Johnson when he came to power almost two years ago. And Hussain MS, Gareth Davies MS, Joel James MS, Luke Fletcher MSD, Mark Isherwood MS, Peredur Griffiths MS, Rhys ab Owen MS and Sioned Williams MS signed their names on the giant prescription that Alzheimer’s Society delivered to the Senedd.

The charity says that while dementia is not curable yet, the social care system is, and it wants the government to commit to a plan that will deliver high-quality, accessible social care that is free at the point of use, like the NHS.

During Alzheimer’s Society’s Dementia Action Week in May, the charity unveiled a giant prescription outside the Senedd in Cardiff calling on First Minister of Wales Mark Drakeford to prescribe ‘high quality, easily accessible and consistent social care, free like the NHS – to be universal and personalised for everyone with dementia and their families who need it’.

Attending the event in Cardiff was Sarah Williams, a carer from Newport, South Wales.

Sarah said: “My mum, Brenda, is 86 and was diagnosed with dementia six years ago. My family and I managed to look after mum in her own home for four years, it was very challenging as I still had a young family and trying to juggle the demands of a family, a job and full-time caring eventually proved too much.

“I gave up my job as I was emotionally and physically exhausted. Mum was also beginning to wander outside of her house in the middle of the night and we were concerned for her safety.  We didn’t get much support from the care system, to care for her at home, only three visits a day, for half an hour each, to help prepare meals and for personal care. If we employed a private care agency it would cost £20 an hour for home visits or for somebody to take her out.

“My dealings with what I call the ‘I don’t care system’, left me feeling very frustrated, despondent and increasingly cynical. Managers would come to the house, fill out assessments, tick lots of boxes and disappear. What most carers really need is access to good quality, affordable respite care.

“Mum eventually went into a care home, it was very expensive, £1,300 a week and most of the time mum was asleep. Then the care home went into lockdown, and because of Covid, we were not able to visit my mum, which we all found very difficult and when we were told there were cases of Covid in the home, my brother and I made the decision to bring her back to her own home and care for her ourselves.

“We decided to try live in 24/7 care, through a private care agency, who charged £120 a week, to find a carer, after that they didn’t really do much apart from send the bill. The standard of care from the carers varied enormously, some of the carers said they had experience of dementia on their CV, but it very soon became apparent they didn’t. However, at last we managed to find an excellent carer, who is priceless, she has bonded very well with my mum, they have become great friends.

“Successive Governments, both Labour and Conservative, have failed to cure the broken social care system, they have pledged to reform the system, but have broken their promises.  There are always lots of words, but no actions. People with dementia are discriminated against within the current system, it is an illness and the NHS was set up to look after people, with illnesses, but if you have dementia that support just isn’t there and it certainly isn’t free at the point of need. Private care agencies are making a profit out of a person’s illness which I think is immoral.

“People living with dementia can enjoy healthy, productive, independent lives, as long as they have access to good quality care and support, but they are being denied that at the moment. The care system simply isn’t caring, there is no care in the care system.”

A survey carried out on behalf of Alzheimer’s Society ahead of yesterday’s petition hand in shows people now regard social care as a top priority for the government to address, regardless of who is in power.

The Deltapoll survey revealed 80% of respondents in Wales felt the government should make it a priority to improve access to community care, as well as the quality of care provided in care homes and by home care providers.

Nationally, 77% of those polled ranked social care as a top priority, with only the NHS (88%) and Crime and Policing (78%) scoring higher.

Sue Phelps, Country Director for Wales at Alzheimer’s Society, said: “The fact that more than 4,000 people from across Wales signed our Cure the Care System petition demonstrates the depth of feeling about the current poor state of social care.

“The new Secretary of State for Health and Social Care, Sajid Javid, must honour this government’s promise to fix social care with a clear, budgeted plan this year– and to consider not just funding, but also improving the quality of care that people receive.”

“Sadly, decades of chronic underfunding and neglect have led to a care system that is costly, inadequate and deeply unfair – and the pandemic has exposed these failings like never before.

“Right now, nearly a million families affected by dementia in the UK are struggling to take care of their loved ones with the dignity and support they deserve.

“It doesn’t have to be this way. A reformed system would provide quality care that is free and easy to access, no matter where people live.

“NHS care is provided according to need and is free at the point of use. As a matter of fairness, dementia care must be delivered on the same principle.”

To unite with Alzheimer’s Society and join their #CureTheCareSystem campaign for quality social care for people affected by dementia visit alzheimers.org.uk/campaign