Mother courage
Who will care for my son when I’m gone?
‘Iworry about David all the time.” Moira Harris, 82, speaks softly as she looks out through the window of the picturepostcard countryside cottage outside Macclesfield that she shares with second husband Andy, an 85-yearold retired GP.
“He is my son and he is going to be 54 next birthday, but I am still worrying. Who will know what drugs he needs to take if I’m not here? He doesn’t know. Who will check daily that he is all right and taking his meds? Who will be monitoring his mental state? I’ve seen others in his situation who have no family member to care for them. They fall by the wayside.”
David, Harris’s middle child by her first husband, was diagnosed with schizophrenia 30 years ago. Like many parents in a mental health system that everyone involved accepts is chronically underresourced (it currently accounts for just 11per cent of NHS spending), this dignified, determined mother has learnt to be a fighter over the years in getting him the care he needs – but is mindful she won’t be around to fight for him forever.
“I have a diary,” she says, “that I’ve kept through the years. I went through it yesterday to remind myself. I wished I hadn’t.”
A promising actress in her youth – she trained at Lamda, worked with Sam Wanamaker and got her big break when director Tony Richardson chose her from 300 aspiring starlets for a part in 1961’s A Taste of Honey – Harris gave up her career after her divorce to raise her children alone. David was, she recalls, top of his class and good at sport until he was 13, but then flunked his O-levels, and developed a severe eating disorder.
As he entered his 20s, one crisis followed another and his behaviour grew more erratic. In 1985, he was spotted walking down the central reservation of the M56 motorway.
“He wanted to get to Manchester Airport because he thought there was a computer there causing the voices in his head. I was called to the police station, where he was quite literally throwing himself against the walls.”
Since he was formally diagnosed at 25 in 1989, there have been periods of calm and good health, where he has lived in supported housing. But there have also been repeated crises when he requires inpatient care.
“Sometimes I think about what he might have been,” Harris reflects. Her other two children have busy careers and families of their own. “He’s never had a job. I’ve mourned him for years, that he wouldn’t reach his potential.”
Her latest battle on David’s behalf is over the fate of the Millbrook Unit, a specialist inpatient mental health facility for adults and older people on the campus of Macclesfield District General Hospital.
“David absolutely depends on it. His illness means he needs things to be familiar. And Millbrook is familiar. Now they want to take that security away from him.”
It is the last such facility in the whole densely populated east half of Cheshire, but under threat of closure as part of a variety of options out for public consultation on a “redesign” of services provided by the local Cheshire and Wirral Partnership NHS Foundation Trust (CWP). National statistics show that, over the past three years, the number of inpatient mental health beds in England has dropped by around five per cent to 18,282. In the same period CWP’S provision has fallen at almost double that rate, from 290 to 269. And its bed occupancy – at 92.6per cent on the latest figures – is well above the 85per cent average that it considered good practice.
Which makes Harris all the more puzzled at the suggestion being made that any loss of beds at Millbrook could be absorbed by two other CWP facilities on the far west side of the county. On current figures, they appear to have very little slack.
Her biggest worry, though, is that the likely outcome of the consultation process will mean a gruelling 80-mile, three-hour round trip for her to visit David when he needs inpatient care, instead of the current short drive from her cottage into central Macclesfield.
Peter Hayes, a former chairman of the East Cheshire NHS Trust, has heavily criticised the plans, pointing out that “moving people 40 miles away from their home town smacks a bit of the old-style asylum” – leaving patients out of sight, out of mind.
The proposed reorganisation comes against the backdrop of the Government’s Five-year Forward View for Mental Health, announced with great fanfare in February 2016 and promising an additional £1billion in funding by 2020. “The Five-year Plan includes putting a stop once and for all, to sending people sometimes hundreds of miles away from their families and friends when they are at their most unwell because there are no hospital beds near them,” points out Paul Farmer, chief executive of Mind.
Jacki Wilkes, associate director of commissioning at NHS Eastern Cheshire Clinical Group, stresses that the proposals are “not a cost-cutting exercise. It is about spending the same amount of money, but in a way that gives people better community mental health services, robust early intervention delivered close to home, as well as a crisis care centre and crisis beds when they need them.”
The plans have been drawn up as a result of widespread consultation with user groups, she says – though Harris only learnt of them through a newspaper report. How does she feel about the prospect of requiring an 82-year-old mother to drive for hours to see her schizophrenic son?
“We are acutely conscious of this and, if it does arise, then we are already looking at driving schemes or use of technology that will make it easier for families to keep in touch.”
Local opinion has mobilised against any closure of Millbrook. An online petition (doyoumind.co.uk) has attracted 3,200 signatures and the local Conservative MP, David Rutley, has set out his opposition.
Part of the rising tide of concern comes from a fundamental lack of trust engendered by recent experiences of care in the community. In 2014, Harris remembers, David messed up taking his medicines while living in his sheltered flat and ended up on a downward spiral. Her attempts to summon help from community services went unheeded because it was the weekend. He ended up in A&E, and then on the Millbrook Unit for several months.
Then last December, David abruptly stopped taking his medication altogether. “He told me the drugs were a straitjacket and he wanted to feel life again,” Harris says. Again it was a Friday afternoon. Her frantic attempts – and those of his mental health social worker
– to contact the community care coordinator failed.
Harris found David on the Saturday “shaking his head and telling me he was getting rid of the plasma”, and spent the weekend ringing the six emergency numbers she had been given, to no avail – by the Monday, her son had to be immediately sectioned, and he is still in an intensive care bed now.
But Harris is reluctant to criticise individual workers. “They are simply overburdened. What I do know, though, is that it is Millbrook that David can depend on in a crisis, and there just isn’t enough care available in the community to replace it.”
And if Millbrook does close? “For as long as I am able, I will always be vigilant.” She touches the side of her head. “David is always here.”
‘I think of what might have been… I’ve mourned him for years’