How children with learning difficulties like Alexandra are abandoned by penny-pinching councils as adults
That’s why her family is raising money to build a special centre to provide vital care
RACHAEL SCott-HuntEr is not inclined to dwell on things that might have been. rather, she cherishes every single moment shared with her beloved daughter Alexandra. Alexandra was 47 when she died suddenly of sepsis, in 2019, having spent her entire life dependent on others to support her in the day-to-day tasks that most of us take for granted.
A brain haemorrhage when she was just four days old left her with profound learning disabilities.
‘It took her speech, it destroyed most of her sight and it took the motor control so she couldn’t walk, couldn’t feed herself, couldn’t even rub her nose — nothing,’ says rachael.
‘It rendered her completely dependent on somebody else. But what a bright cookie she was. She understood everything and she would express her feelings, albeit differently from you and me.’
there is no doubting one thing Alexandra did do with gusto, and that was smile — it beams out of just about every photograph in the family album. that smile is testament to the years of devoted care rachael, 76, and her husband Ian, 78, put into ensuring their daughter was not just cherished, but listened to; fighting for every opportunity to enrich her life.
And three years after Alexandra’s death, rachael, who wears her daughter’s picture in a silver locket around her neck, has not stopped fighting.
But now her energy is focused on improving the care available for the estimated 145,000 adults with severe and profound learning disabilities, for whom provision has been steadily eroded by years of local authority budget cuts.
Alexandra’s support was gradually reduced after she left school: one-to-one care; hydrotherapy; even hot meals, each stripped away.
rachael and Ian spent their daughter’s lifetime fighting to plug those gaps and make her life as rich as it could possibly be — and now rachael wants Alexandra’s lasting legacy to be improving care for others.
A beautiful plot of land on the outskirts of Bicester, near their oxfordshire home, has been donated, planning permission granted and nearly £850,000 raised to create an adult care centre, which will be called the Alexandra House of Joy.
THE centre will include a wealth of facilities designed not just to ease physical discomfort, but to stimulate the adults using it. there will be a music room, arts and crafts and a hydrotherapy pool. It will have six bedrooms, split between respite and hospice care, the latter something particularly close to the ScottHunters’ hearts, because they saw for themselves just how sparse palliative care tailored to non-verbal patients is.
rachael hopes the project will be a trailblazer for similar centres; but first, she needs to raise the £3 million required to build it. retired businessman Sir Frank Davies is spearheading a fundraising drive, but the beating heart of the project is a mother’s love.
the reasons this project is so important to rachael are many, but chief among them is the erosion of care she witnessed.
Six years ago, in oxfordshire, there were 22 daytime support centres where adults with disabilities or dementia could go. today there are eight.
the number of learning disability nurses in the nHS has fallen from 5,500 in 2009 to approximately 3,200 last year — even though people with a learning disability have a significantly lower life expectancy than the wider population: 18 years fewer 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, defying expectations, Alexandra rallied. When she was two, they moved to London to be near to specialist care, and later to oxfordshire, where she went to a special school.
While her life was severely restricted, Alexandra, says her mother, was bubbly; an extrovert.
And by the time she left school, she’d even started to learn how to deploy a system of large computerised buttons to communicate.
‘Her school years were wonderful,’ says rachae. ‘ She was well looked after and encouraged.’
then, aged 19, education stopped and Alexandra was moved to a day centre for adults in Kidlington, oxfordshire. At first, this transition proved to be a good one. rachael was pleased, and Alexandra delighted, when adults with severe learning disabilities were integrated with those with milder disabilities. ‘It seemed to help both groups,’ says rachael.
But then cuts began, starting with the computerised system that Alexandra used to give her a ‘voice’.
‘the argument they gave was it was a specialist service that couldn’t be provided because she was no longer in education,’ says rachael. Holidays and day trips were an easy target for cuts, then came hydrotherapy — sessions that provided relief from Alexandra’s near- constant physical discomfort.
next, the centre itself was sold, meaning sociable Alexandra, who thrived on familiarity, ended up in a much smaller centre with no garden and fewer facilities. Friends she loved disappeared; so, too, did carers (rachael has nothing but praise for the many who helped look after Alexandra).
‘ We were all horrified,’ says rachael. She and fellow parents protested at oxfordshire County Council’s offices, but to no avail.
‘Each loss created fear, anxiety, stress and grief, and her mental health — which no one but us considered — took a dive into depression, which affected her eating, drinking, entertainment and sleep to a big degree,’ says rachael.
‘Each time it would go on for months, and it took Ian and I months to lift her spirits again.’
then, in 2016, 14 more day centres countywide were closed, integrating the care of adults with learning difficulties with elderly people with dementia.
‘Carers of both groups were horrified,’ says rachael. ‘the two groups require completely different provision: elderly dementia patients need quiet, calm surroundings; while adults with profound learning disabilities love loud music and bright lights.’
Alexandra was moved to a centre in Bicester where, within a short time, even the provision of meals was removed.
the strain of all this was huge, not least as the Scott-Hunters were already living with worry about what the future might hold for Alexandra — without them, but also because of her health.
the value of day care provision for these parents cannot be overstated. the Scott-Hunters know of people in their 80s and 90s still caring for adult children, for whom a day centre is a lifeline.
‘It [caring for Alexandra] took over our lives completely,’ says rachael. ‘Ian and I would be up two or three times a night, every night. We didn’t mind at all, yet at times we reached a fever pitch, thinking: “I don’t think I can do this any longer.” But we would soon get out of that, because we just adored her.’
NOW, rachael wants those in the same situation as Alexandra and their families to have a better provision of care. ‘this project we are trying to achieve will help primary carers, and it is so important to me that they are helped, because we know what it’s like to struggle; to feel like nobody wants to know.’
rachael is not a woman to dwell on ‘what ifs’, but she admits there are times she wonders about what might have been.
‘ there was this massive dedicated input when Alexandra was at school. But when education stopped, definitely progression was halted,’ she says.
‘We saw it with the [system of computerised] buttons and her communication — how could someone do that [take it away]? As a parent, you almost wish they had never started.’
As for why this particular group has been so hard hit by cuts, rachael can’t help but feel they are easy targets. She recalls one occasion when Alexandra’s care manager went to a meeting at which budgets were discussed.
‘He came back and told us that during this conversation one of the grey suits — that’s what he called them — had said to him: “Hang on a minute, you are asking for an increase. Can you just tell me what does this person give society?” He said he had never been so shocked in his life.’
rachael and Ian were Alexandra’s voice to the end. She became ill quickly — and it was only when she was taken to hospital that it was discovered her gallbladder had burst, leading to sepsis.
For three days the devoted parents didn’t leave their daughter’s side; they were there, too, when she was transferred to a hospice.
‘We knew ourselves, because of the life we’ve had with her, that they would never have understood her body language or her communication,’ says rachael.
that experience has made her determined that this new centre must provide hospice provision.
telling their story, rachael’s love and pride in Alexandra is unmissable. ‘It’s been hard, it’s been tough, stressful, lonely and frustrating at times, but we feel honoured; she was an absolute joy,’ she says. ‘there were more than 250 people at her funeral, which says it all.’