One daughter’s seven year battle to get dignified dementia care for her mum
Thursday 29th November 2018 @ 15:59 by Tom Greggan
Denton & Audenshaw News Tameside

A daughter from Audenshaw has spoken out about her battle to get proper care for her mother who has dementia and lives at home.

Lisa Evan’s mum, Margeurita, was diagnosed with dementia in 2011. She told Lisa that her wishes were to never go into a care home, and that when the time comes, she wants to pass away in her own home.

Since then, Lisa has spent seven years battling care agencies, social services and the Tameside & Glossop Integrated Care Clinical Commissioning Group to get proper care for her mother at home.

Only now, Lisa feels, is her mother getting the care she deserves in the surroundings she wanted.

“I just decided that I couldn’t go through agencies anymore,” Lisa said. “It just doesn’t work. It isn’t person-centred care. I see it as money for old rope. I could write a book on the shocking care my mum has received since she began her journey with dementia.”

The care given to Margeurita got so bad that Lisa resorted to installing CCTV to ensure that all the care given to her mother is of a proper standard and included all the elements both Lisa and Margeurita want in her care are being implanted. Lisa added that she would encourage other people in a similar situation to do the same.

Now, Margeurita’s care is funded by the NHS under a personal health budget, provided by the CCG, which Lisa says she had to fight for. The budget is used to employ a team of nine personal assistants, who care for Margeurita in a way that is specifically tailored to meet her needs.

The team came up with a specific care plan for Margeurita that they follow daily. Dignity is a big part of the plan, ensuring that Margeurita is treated in the way she would treat herself if she could. Since the plan was implemented, Lisa says her mother’s health has maintained, proving that receiving proper care at home is a realistic option.

“At one point I couldn’t even have an afternoon out because the care was that bad,” Lisa said “Now, I’ve just come back from a week in Gran Canaria and it was perfect. It was the first time I’ve gone away in six years.

“It was nearly half the price of what it would have cost had my mum gone in a nursing home. The girls took it in turns to stay and it worked. In the past, it’s been out of respite and straight into hospital.”

Marguerita Evans is finally receiving the dignified care that her daughter Lisa has been fighting for.

Lisa even claims that she is saving the NHS money as the doctor doesn’t need to come out to Margeurita anymore and nurses only come out to do compulsory checks. “It’s down to us working as a team,” she said.

While Lisa is delighted with how things are now, she is frustrated that it’s taken seven years of struggling to get to this point. She feels she should have been supported more and presented with this option when her mother first fell ill. She’s angry that other people who wish to look after a loved one in the same way she does for her mother aren’t told about this option and aren’t aware of it.

“Nobody should have to go through what my mother and I have been through,” Lisa said. “My mum is now having the best of the best but that’s only because of me. Why aren’t the CCG showing people this? Why aren’t they showing people that there are alternatives to care homes? Why do you have to fight for everything?

“I have made poor choices and I’ll hold my hands up but at the end of the day, you don’t know what’s right and wrong. You’re just left to your own devices. I would most definitely recommend this to other people in the same situation as me.”

Lisa has been campaigning for dementia admiral nurses in the community since 2013, to not only support people with dementia, but also their carers.

She added: “Nicola Lavery, the dementia nurse from Willow Wood came to visit and noticed my mum was aspirating. She got somebody from the hospital and got us the correct equipment we needed to ensure my mums health and safety. This was all because we had guidance from the right people. This is the goodness that dementia nurses bring into the community. especially Nicola as if it were not for her, we wouldn’t have known, we are not dementia nurses.”

“If it wasn’t for Nicola, we wouldn’t have known. We’re not dementia

nurses,” Lisa continued. “I am a daughter, just trying to uphold my mum’s personhood and give her her wishes.”

Denton & Reddish MP Andrew Gwynne has supported Lisa in her battle for proper care. Speaking about her story, Gwynne said: “My office has been helping Lisa Evans and her mum, Rita, for a number of years now, so much so that Lisa has become almost a family friend as a consequence.

Andrew Gwynne MP

“The battles that she has had to fight to get decent, quality care, love and attention for her mum who suffers from dementia, is something that I think no one should have to go through.

“Lisa has fought a battle on behalf of her mum, but actually it’s more than that, she’s fought a battle for the wider Tameside community. I think we need to look again at how we provide decent social care services as a country going forward.

“They need a lot more funding and support from central government so that we can truly achieve that ambition of person centred care.”

Lisa is still in an ongoing battle to ensure other people are getting help with options like hers. She is adamant that care within the home is reachable and Margeurita is a prime example of that.

She said: “There are thousands, if not millions, of people who have worked all their life and deserve to be cared for by the highest of standard. My mother and I are two of a few people who are going to inspire and lead the way for better care within the home.”

While the Tameside and Glossop Clinical Commissioning Group don’t comment on individual care plans, a spokesperson for the organisation said: “With the introduction of NHS Personal Health Budgets (PHB) for Continuing Health Care, the Clinical Commissioning Group supports patients in receiving a personal health budget to allow them to develop their own care team for care delivery. This allows flexibility in care delivery so it is personalised to the patient’s needs, therefore making it a better option for achieving improved personal health outcomes.

“Personal health budgets are offered to all NHS Continuing Health Care patients and from April 2019 they will become the default offer of care. In addition the CCG has recognised the importance of supporting people to live well with dementia in the community. The Strategic Commission has agreed a plan to invest in and redesign community dementia support across all five neighbourhoods.

“A new team leader will manage all dementia staff who work in both the community and the hospital ensuring continuity of care. The team will be boosted by an extra dementia practitioner post as well as the new Dementia Support Worker Service, commissioned from the Alzheimer’s Society. The dementia team will work within the Integrated Neighbourhood Teams, thereby building dementia expertise across all community services.”