Two sisters have launched a campaign to introduce CCTV into care homes and a dementia rights charter to protect those living with the illness in memory of their mum.
Ashley Joachim, 47, and sister Lesley Haswell, 50, from Sunderland, lost their mum Patricia Heslop - who had dementia - at the age of 75, in April 2017.
Mrs Heslop was at Hebburn Court Dementia Nursing Care Home, a HC One Care home in South Tyneside, and as the disease progressed into late-stage Alzheimer’s dementia, she lost her ability communicate and would spend hours walking round the home.
The sisters say that, after seeing her condition deteriorate an ambulance was called at their request and their mum was admitted to hospital in November 2016, where doctors diagnosed her with an impacted hip fracture requiring extensive hip replacement surgery.
She never recovered from her injuries and died five months later in palliative care.
The sisters believed their mum had suffered a fall which had not been reported.
An inquest held in March last year Sunderland Coroner Derek Winter ruled Mrs Heslop died from the combination of natural causes and an unwitnessed fall which had resulted in a fractured right femur neck.
The Coroner also sent a Regulation 28 report - aimed at preventing future deaths - to the Secretary of State for Health and Social Care Jeremy Hunt and HC One Care Homes.
The sisters have started campaign - I Still Matter Now - in memory of their mum Patricia.
The campaign sets out a Dementia Charter - including the introduction of CCTV into care homes.
Ashleigh said: “We want the case reopened. People with dementia are vulnerable.
“The Government are not stepping up to the plate on this issue and it ends up being families like us having to suffer.
“We need the charter to be a national template because every care home is different.”
The sisters are also on the lookout for a local film maker to tell the story of the impact of dementia after seeing their mum battle with the illness.
Ashleigh said: “We want someone brave enough to make a documentary or film that is the true story of dementia - the hidden horrific truth in order that we change forever the public’s views of this terrible disease and to ensure the laws change to protect people and their families.” A spokesperson for the HC One care home said: “The health and wellbeing of our residents is, and always will be, our top priority and we take cases such as these very seriously.
“Our deepest sympathies and apologies go to Mrs Heslop’s family for what took place in 2016 and which we were deeply saddened by.
“A full internal investigation was completed at the time and several changes were made as a result.
“This included the introduction of a new management team and the retraining of care staff. “We also have in place a compulsory and comprehensive series of safeguarding and risk assessment evaluations which all care staff are required to complete to a high standard.
“Over the past two years we have made significant positive progress in improving care at Hebburn Court.
“This was recognised by the Coroner, both during the inquest in March and in the documentation released afterwards which confirmed we addressed concerns appropriately and within a suitable timescale.
“More broadly, we receive regular positive feedback from the majority of the home’s Residents and relatives too, which is why we are currently rated 9.9/10 on Carehome.co.uk the care sector’s leading customer comparison website.
“Over recent years we have looked very closely at the use of CCTV and conducted extensive consultation with residents, and their loved ones and other stakeholders about the use of CCTV in our homes.
“We found the majority of residents, and many of their relatives, had concerns about privacy issues that would need to be addressed if CCTV were to be introduced.
“However, we continue to assess the potential benefits of the use of CCTV in our care homes and will continue to make sure we are doing everything possible to deliver the kindest care for all our Residents at all times.”
Anyone who is able to get involved in making the dementia film can email firstname.lastname@example.org
People can follow the I Still Matter Now Campaign on Twitter @ISTILLMATTERNOW.
MP backs campaign
The sisters have written to Sunderland MP Julie Elliott who has pledged her support to their campaign.
Julie Elliott said: “This is an extremely sad story, and what Lesley and Ashleigh and the rest of the family have been through was harrowing, when I met with them it was clear the heart break they had endured.
“It goes without saying that better care, more funding for training of medical staff and an overhaul of social care, in particular within the care of dementia patients is needed and I give my support to their campaign for this.”
Debra Stephen, deputy director of quality and safety at North East Ambulance Service, said: “As a Trust, we recognise the challenges that can be faced by patients living with dementia as well as those caring for them.
“Since 2016, we have been working to improve the knowledge and skills of our staff, which has included becoming a Dementia Friendly organisation and being part of a regional dementia network to share best practice.
“We have a dementia awareness session in our statutory and mandatory training for all staff and have produced an Introduction to Dementia booklet for frontline staff.
“We have also worked with the Alzheimer’s Society to develop a communication tool to assist our front line staff when caring for patients living with dementia and have developed our Dementia Strategy, which aims to further improve the service we provide.”
The charter sets out a number of points which include:
* Rights to adequate nutrition and hydration.
* Rights to being kept hygienically clean and cared for.
* Protection from all types of staff abuse and neglect with individual accountability.
* CCTV legalised in all dementia nursing homes/NHS hospital wards across the UK.
*An emergency ambulance service late-stage dementia protocol to prevent further suffering when potential fractures and serious injuries have occurred in late-stage dementia people.
* Nursing dementia care home sector to be returned to the state in its entirety
* Provision of specialist dementia NHS hospital units with highly trained dementia staff throughout the UK.
* 100% free nursing dementia care at disease’s mid-stage onward.
* Greater protection/recognition for those holding Lasting Powers Of Attorney.
*A specific dementia-related organisation to replace the CQC with greater powers to prosecute care homes when a neglect case is not deemed criminal by police.