Rachael Scott-Hunter doesn’t tend to dwell on what might have been. On the contrary, she cherishes every moment she shares with her beloved daughter Alexandra.
Alexandra was 47 when she died suddenly of sepsis in 2019, after a lifetime of relying on others to support her with the daily tasks that most of us take for granted.
A brain haemorrhage at just four days old caused severe learning difficulties.
“It took away her speech, it destroyed most of her vision, and it took away her motor control to the point where she couldn’t walk, feed, even rub her nose—nothing,” says Rachael.
“It made her totally dependent on someone else. But what a happy cookie she was. She understood everything and expressed her feelings, even if they are different from you and me.’
Dedicated: Rachael Scott-Hunter with her daughter Alexandra, who suffered a brain haemorrhage when she was just four days old, leaving her with a severe learning disability
The number of carers with intellectual disabilities in the NHS fell from 5,500 in 2009 to around 3,200 last year
There is no doubt that Alexandra did one thing with enthusiasm and that was the smile – it shines in almost every photo in the family album. That smile is a testament to the years of dedicated care that Rachael (76) and her husband Ian (78) have given to ensure that their daughter is not only appreciated, but also listened to; fighting for every chance to enrich her life.
And three years after Alexandra’s death, Rachael, who wears her daughter’s photo in a silver locket around her neck, hasn’t stopped fighting.
But now their energies are focused on improving care for the estimated 145,000 adults with severe and pervasive learning disabilities, whose services have been continually undermined by years of local government budget cuts.
Alexandra’s support was gradually reduced after she left school: one-to-one support; hydrotherapy; even hot meals, each one slimmed down.
Rachael and Ian fought throughout their daughter’s life to fill those gaps and make her life as rich as possible – and now Rachael wants Alexandra’s lasting legacy to improve the care of others.
A beautiful plot of land on the outskirts of Bicester, close to her home in Oxfordshire, was donated, planning permission granted and nearly £850,000 raised to create a care home for adults called the Alexandra House of Joy.
The center will feature a host of facilities designed not only to reduce physical discomfort, but also to energize the adults who use it. There will be a music room, arts and crafts and a hydrotherapy pool.
Rachael and Ian fought throughout their daughter’s life to fill those gaps and make her life as rich as possible – and now Rachael wants Alexandra’s lasting legacy to improve the care of others
It will have six bedrooms, divided into respite care and hospice care, with the latter especially dear to the Scott-Hunters, who have seen firsthand how rare palliative care is for nonverbal patients.
Rachael hopes the project will be a trailblazer for similar centres; But first she needs to raise the £3 million needed to build it. Retired businessman Sir Frank Davies is leading a fundraiser, but the beating heart of the project is a mother’s love.
There are many reasons why this project is so important to Rachael, but the most important one is the erosion of caring that she has seen.
Six years ago there were 22 day care centers in Oxfordshire for adults with disabilities or dementia. It’s eight today.
The number of nurses with learning disabilities in the NHS fell from 5,500 in 2009 to around 3,200 last year – although people with learning disabilities have a significantly lower life expectancy than the rest of the population: 18 years less for women; 14 for men.
Rachael and Ian, a retired butler, were living in Wales when Alexandra suffered a brain haemorrhage.
It turned life upside down. The couple, who have an older son, Paul, now 53, were cruelly told their daughter would be “a vegetable”. But against all odds, Alexandra recovered. When she was two they moved to London to be near specialist doctors and later to Oxfordshire where she attended a special school.
While her life was severely curtailed, Alexandra, her mother says, was bubbly; an extrovert.
And by the time she left school, she had even begun to learn how to communicate using a system of large computer-controlled buttons.
“Their school days were wonderful,” says Racae. “She is well looked after and encouraged.”
Then, aged 19, her education stopped and Alexandra was transferred to an adult day care center in Kidlington, Oxfordshire. This transition turned out to be good at first. Rachael was delighted and Alexandra was delighted when adults with severe learning disabilities were integrated with those with milder disabilities. “It seemed to help both groups,” says Rachael.
Now Rachael wants to take better care of those in the same situation as Alexandra and her families
But then the budget cuts began, starting with the computer system Alexandra used to give her a “voice”.
“The argument they made was that it was a specialized service that could not be provided because she was no longer in training,” says Rachael. Holidays and day trips were easy targets for budget cuts, and then came hydrotherapy – sessions that offered relief from Alexandra’s near-constant physical ailments.
Then the center itself was sold, leaving the pleasant Alexandra, who thrived on intimacy, in a much smaller center with no garden and fewer amenities. friends she loved disappeared; so were caretakers (Rachael has nothing but praise for the many who looked after Alexandra).
“We were all shocked,” says Rachael. She and other parents protested at Oxfordshire County Council offices, but to no avail.
“Each loss caused fear, anxiety, stress and grief, and her mental health – which no one else but us thought about – descended into depressions which severely affected her eating, drinking, entertainment and sleep,” says Rachael.
“It took months each time, and Ian and I took months to cheer her up.”
Then, in 2016, another 14 day centers across the country were closed to integrate care for adults with learning disabilities with older people with dementia.
“Carers from both groups were shocked,” says Rachael. “The two groups need a very different offer: Elderly patients with dementia need a quiet, calm environment; while adults with severe learning disabilities love loud music and bright lights.’
Alexandra was transferred to a center in Bicester, where even the catering was stopped within a short time.
The tension was immense, not least because the Scott-Hunters were already living with worries about what the future might hold for Alexandra – not only without her, but also because of her health.
The value of childcare for these parents cannot be overstated. The Scott-Hunters know people in their 80s and 90s who are still caring for grown children for whom daycare is a lifeline.
For three days the devoted parents did not leave their daughter’s side; They were also present when she was transferred to a hospice
‘It [caring for Alexandra] completely took over our lives,” says Rachael. “Ian and I were up 2 or 3 times a night every night. We didn’t mind at all, but sometimes we got a fever and thought, ‘I don’t think I can do this anymore.’ But we would soon get out of it because we just adored her.’
Now Rachael wants to take better care of those in the same situation as Alexandra and her families.
“This project that we are trying to implement will help caregivers on the front line and it is so important to me that they get help because we know what it is like to struggle. feel like nobody wants to know.’
Rachael is not a woman to dwell on what ifs, but she admits to occasionally wondering what could have been.
“When Alexandra was at school, there was enormous commitment. But when education stopped, progress definitely stopped,” she says.
“We saw it with that [system of computerised] Buttons and their communication – how can anyone do this [take it away]? As a parent, you almost wish they never started it.”
As for why this particular group has been hit so hard by budget cuts, Rachael can’t help but think they’re easy targets. She recalls a time when Alexandra’s care manager went to a meeting to discuss budgets.
He came back and told us that one of the gray suits – that’s what he called it – said to him during this conversation: “Wait, you’re asking for a raise. Can you tell me what this person gives to society?’ He said he had never been so shocked in his life.’
Rachael and Ian were Alexandra’s voice until the end. She fell ill quickly – and it wasn’t until she was rushed to hospital that it was discovered her gallbladder had burst, leading to sepsis.
For three days the devoted parents did not leave their daughter’s side; They were also present when she was transferred to a hospice.
“We knew ourselves, because of the life we had with her, that they would never have understood her body language or her communication,” says Rachael.
Based on this experience, she decided that this new center should offer hospice.
They tell their story, Rachael’s love and pride in Alexandra is clear. “It was tough, it was tough, stressful, lonely and sometimes frustrating, but we are honored; It was an absolute pleasure,” she says. “There were over 250 people at her funeral, that says it all.”
- Visit: alexandrahouseofjoy.co.uk to support the fundraiser and make a donation
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Crystal Leahy is an author and health journalist who writes for The Fashion Vibes. With a background in health and wellness, Crystal has a passion for helping people live their best lives through healthy habits and lifestyles.
