Local authorities failing to meet dementia care targets

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“No one's elderly parent, grandparents or friends should be left unnecessarily in a hospital bed, when they could be treated in the comfort and dignity of their own home.Today, Healthwatch England has published new data showing that overstretched councils across England are struggling to meet key legal duties in social care services for people with dementia.

The Care Act, which came into force in April 2015, says that councils must ensure that their social care services are responsive to people’s specific needs. To do this, they must review people’s care plans at least once a year.

The new figures, collected under the Freedom of Information Act, show that councils are falling short of this duty and that people with dementia are worst affected.

We asked the 152 councils with social care responsibilities in England questions about reviews and reassessments for people with dementia. 97 councils provided the following information:

  • Only 45% of people with dementia who use social care got a care review in 2017/18. NHS Digital report that the figure for all care users is 51%.
  • One-quarter of people with dementia had to have an urgent, or unplanned review because an emergency or sudden change of circumstance meant their support needs had changed.

When a review finds that someone’s needs have changed significantly, it should trigger a full reassessment of their needs. We found that:

  • 65% of completed reviews led to a full reassessment.
  • Over half (57%) of reassessments resulted in no change to the person’s care.
  • 8% of reassessments led to a decrease in funding.
  • The remaining 34% saw an increase in funding.

Each person’s experience of dementia is unique, symptoms affect everyone differently. Often people’s condition can deteriorate quickly or fluctuate rapidly. If reviews are not in place, people with dementia will not get the care they need, often friends and family will have to step in to pick up the pieces that formal social care cannot.

2017/18 one third of people who use dementia support services got no review at all.

This can have a serious impact on the quality and sufficiency of the care they receive, meaning that people with dementia get the care that is not right for them and live with unmet support needs. In some instances, even when a review has happened, the support that is needed is not put in place or available.

We heard from David, who cares for his wife Georgina who lives with dementia:

“At each social care review, I have raised the issue of agency care companies not being able to provide the agreed care, despite their insistence that they could. This results in much-reduced agency carer support for Georgina, which then impacts on me.

“I am responsible for all of Georgina’s personal care. She is now doubly incontinent and may require changing up to four times in 24 hours. This is explained carefully to the care agency and to the individual agency carers.

“In my experience, with the exception of live-in agency carers, most care workers do not have experience of supporting with personal care. When they realise what is involved, they decline to attend.

“This has a huge impact on my life. My ability to have any sort of a life away from caring for Georgina comes to a halt, and any gap in support has to be filled by me. This includes one to one support with meals, personal care and constant observation to ensure she is safe, not just during the day, but in the evening and overnight, when she is in bed, but maybe restless or agitated.

“This is both time consuming and tiring. My average sleep over 24 hours is 3.5 hours. My average deep sleep is 25 minutes.”

Responding to these findings, Imelda Redmond CBE, national director of Healthwatch England said:

“Reviews and assessments are about more than just ticking boxes on a form. Over half of the reviews for people with dementia were missed by councils last year, so we simply don’t know if people are getting the support they need.

“Behind each missed review is a real human story. We heard examples where a lack of support left people and their families struggling to cope on a day-to-day basis, with tasks that many of us take for granted, like eating, washing, dressing or even using the toilet.

“The fact that councils are struggling to meet the Care Act requirement to deliver care reviews should provide a real wake-up call to us all.

“Council resources have been stretched to near breaking point over recent years, meanwhile the number of people with dementia is forecast to increase rapidly, as such the demand for vital support services will only rise.

“When the new Cabinet comes into office in a few week’s time, fixing social care must be a top priority.  A sustainable funding solution will be key, but it is not a fix-all. Service commissioners and care providers must also take a lead role in ensuring that the care they provide is responsive, appropriate and of the highest quality.”

Jeremy Hughes CBE, Chief Executive Officer of Alzheimer’s Society said: 

“It’s downright appalling that more than half of people with dementia didn’t get a care package review last year. Dementia is a complex disease, and a person’s care needs can change dramatically over time. This means thousands of people are not receiving the appropriate care and support that they so badly need.

“Decades of squeezed Government funding has left the social care system on its knees. With one person developing dementia every three minutes in the UK, we need the Government to deliver a long-term funding plan urgently, before the whole system buckles under the strain. In the meantime, we’re calling for substantial investment in quality, specialist dementia support through a dedicated Dementia Fund. The Fund will provide a lifeline to hundreds of thousands of people living with dementia who have already waited too long for decisive, political leadership on social care.”

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