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Shambles mean that BBC journalist Humphrey Hawksley’s son has been stuck in limbo without the care he needs for FOUR years
- Humphrey Hawksley’s son has conditions including cerebral palsy and autism
- Christopher needs constant medical care to help walk, eat and communicate
While most of us have been out enjoying the sunshine this past fortnight, 27-year-old Christopher Hawksley has been mostly sitting in one room, watching TV.
In fact Christopher, who has multiple severe disabilities and uses a wheelchair, zoloft and valium must wait for his parents’ weekly visit just for a short trip around the block.
The care staff where he lives have limited resources so can’t take him to the shops or the music lessons he loves.
At this point, readers might be struck by a sense of déjà vu.
The Mail on Sunday first told the story of Christopher – the son of former BBC foreign correspondent Humphrey Hawksley – back in February.
The talented pianist was born with a number of conditions, including cerebral palsy, and requires round-the-clock medical assistance to help him walk, eat, communicate and use the toilet. He is on the autistic spectrum and often bites and scratches himself when frustrated.
FRUSTRATED: Christopher Hawksley, 27, pictured with his parents Jonie and Humphrey, a former BBC foreign correspondent, has struggled to access services
Back then we revealed that, thanks to a series of catastrophic failures by the care system, Christopher was technically homeless. After he graduated from his specialist residential college in 2019, the local authority struggled to find a suitable home, so he was placed in an emergency respite centre an hour and a half away from his family’s West London home.
READ MORE: BBC’S HUMPHREY HAWKSLEY WROTE DESPAIRINGLY OF THE LACK OF HELP FOR HIS PROFOUNDLY DISABLED SON
These facilities are meant to provide basic care for disabled people for just a few weeks.
It now means that Christopher can’t enjoy activities such as swimming and walks in the park because there is no one available to take him.
In the days following The Mail on Sunday’s first report, the family received a flurry of apologies from local MPs and health chiefs, who promised to find Christopher a home. But nearly six months on, little has changed.
‘My son is rotting away,’ his father Humphrey told The Mail on Sunday. ‘The care team do what they can – and are brilliant, given the circumstances.
‘But there are no activities for him, or anything to do. He is constantly asking when he can go home, and his outbursts continue.’
Shortly after Christopher’s birth he suffered a build-up of fluid on his brain and had to be kept alive by a machine. Doctors gave Humphrey and his wife Jonie, both then 41, a stark choice: give the go-ahead for a series of risky operations that might save Christopher but leave him severely disabled, or have the machine turned off.
In February, Humphrey, 68, admitted, hauntingly, that at times he has questioned whether they made the right decision.
‘It is something I’m still thinking about all the time,’ he says. ‘My wife and I are in our late 60s now – we can’t lift a grown man several times a day. I’m worried now that there’s nowhere suitable to look after my son.’
The past three years have brought a series of disappointments for the Hawksley family. One potential home promised by Hammersmith and Fulham Council – an apartment in a supported living facility for people with disabilities – fell through. Then another private care provider withdrew its offer. Both services said they didn’t have enough staff to provide Christopher with the round-the-clock care he needs.
Christopher, who has multiple severe disabilities and uses a wheelchair, must wait for his parents’ weekly visit just for a short trip around the block (pictured with his father Humphrey)
Humphrey Hawksley, 68, a former BBC foreign correspondent, says he and his wife are worried about the options for their son’s care
After publication of our last article, Humphrey and The Mail on Sunday received supportive emails from the family’s local MP, Shadow Solicitor General Andy Slaughter. He promised to write to local providers to demand they help and ‘ensure the NHS is able to offer a placement for Christopher’.
READ MORE: DISABLED PEOPLE STRUGGLE TO LIVE INDEPENDENTLY DUE TO RIP-OFF MEDICAL AID PRICES
Both Hammersmith and Fulham Council and the Parliamentary and Health Service Ombudsman – an independent body that investigates complaints about Government departments and healthcare providers – said they would conduct investigations into the failures in Christopher’s care.
Within two months, a new home was on the table. The council offered a flat, a 20-minute walk from the family’s home, which was part of a new social housing development with some homes designed for wheelchair users. But a plan for Christopher’s care is yet to materialise.
‘At a meeting, someone from the council suggested six carers coming in and out of Christopher’s flat in one day, working shifts,’ says Humphrey. ‘But given my previous experience, that would be impossible to finance for one person. We are also concerned he’ll be isolated there, with no community or activities.’
Things to do are essential for Christopher – without them he can become agitated and aggressive towards himself and others. ‘When he was at college his days were filled with piano lessons, swimming and physiotherapy, among other activities,’ says Humphrey. ‘Back then, he’d only show signs of agitation during the school holidays, because he had nothing to do. In term-time he expressed far less frustration. He knew what he was doing, and where he was going.’
This month the Parliamentary and Health Service Ombudsman said it would not be investigating Christopher’s care after all. It is not clear why.
After Christopher graduated from his specialist residential college in 2019, the local authority struggled to find a suitable home, so he was placed in an emergency respite centre an hour and a half away from his family’s West London home
The situation is ‘a nightmare,’ says Humphrey, but it is far from unique. The Mail on Sunday has heard from other families in similarly dire positions, with disabled young adults stuck for long periods in hotels, psychiatric wards and old people’s homes.
READ MORE: HEALTH CHIEFS DENY VULNERABLE PATIENTS ROUND-THE-CLOCK CARE
‘Families are so burnt out after doing the caring themselves they accept the first placement the council offers, which often ends up being inappropriate,’ says Danny Dooney, a case worker from the charity Access Social Care which provides free legal advice.
So why is this happening? Experts say it’s partly due to a shift, over the past three decades, toward supported living: flats and houses where people with disabilities can live independently, with the help of on-site carers. Campus-style care homes were shut down.
While this has been positive for many, campaigners argue it has made life harder for a minority of those with severe disabilities who need more support.
The few remaining residential facilities for disabled people are run by private providers or charities. But they may refuse to take challenging NHS patients.
Kari Gerstheimer, chief executive of Access Social Care, says it is not uncommon for severely disabled people to be turned away from residential facilities at the last minute and told their needs are too complex.
And there is another major challenge – the national care staff shortage. Between spring 2021 and 2022, the shortage of carers rose to roughly 165,000, according to a report by The Association of Directors of Adult Social Services. Low pay seems to be an issue.
In the week after Christopher’s story was first published, The Mail on Sunday ran a report detailing the failures of all four Ministers for Disabled People and calling on politicians to take action.
Christopher (right) getting treatment in 2000 with help from his dad Humphrey (left) and mum Jonie (rear)
The MoS demanded that Ministers from all relevant Government departments take part in a parliamentary debate about the standard of care, housing, education and financial aid for disabled Britons.
The All Party Parliamentary Group for Disability backed our call and wrote to the Minister for Disabled People, Tom Pursglove, to request the debate. His press team got in touch to arrange a meeting with The Mail on Sunday about our campaign – but so far he hasn’t been able to find time.
Labour’s Jonathan Ashworth MP – the Shadow Secretary of State for Work and Pensions – also showed initial support. He is ‘very passionate’ about supporting disabled people,’ according to a letter written by his political adviser.
A meeting with him was promised, but no date has been offered. We called again last week and were told to contact the Shadow Department of Health and Social Care.
Next month, the Hawskleys are due to visit another potential home for Christopher – in a supported living service, an hour from home. ‘A care package hasn’t been discussed,’ says Humphrey. ‘And we’ve been in this position twice before and it’s fallen through, so who knows if it will come off.’
Mr Slaughter, Labour MP for Hammersmith and Fulham, said that he has been working consistently to get Christopher settled in a suitable home, adding ‘I wish more progress had been made. I am resolved to redouble efforts – both on his behalf and to improve the living conditions and quality of life for people with complex needs.’
‘My wife can’t move or eat but NHS won’t fund care’
By Eve Simmons
Maureen Kirby cannot move unaided. The 82-year-old former fashion journalist has lost the ability to speak, feed herself or use the toilet, and no longer recognises her husband of 50 years. Yet the NHS refuses to pay for the vital round-the-clock care she needs.
It is a situation that affects thousands across the UK – a scandal that The Mail on Sunday first highlighted in May last year. A £3 billion-a-year pot of cash, known as NHS continuing healthcare (CHC) funding, is specifically allocated to pay for those who don’t just need care but also have specific medical needs.
But we revealed that many elderly, disabled people were having to fork out thousands in legal fees in order to fight for CHC funding.
We told of several desperate families who have been denied the cash – including a frail man with bone cancer and dementia, and a bed-bound stroke victim.
Campaigners hoped that the situation would improve once new legislation came into force in December 2022 that transferred CHC funding disputes to the Care Quality Commission – the independent regulator that can crack down on failing hospitals and trusts.
A LIFE TOGETHER: Jim and Maureen Kirby on their wedding day
The body was expected to be harsher on local health boards. But according to a report last month, four in five CHC applications are still rejected.
Maureen’s husband Jim, 84, has been battling with his local authority since she collapsed while out walking the dog in June 2021.
An ambulance took Maureen to the hospital, where she was admitted to intensive care and diagnosed with an unexplained brain stem injury.
Jim, a former advertising executive, says: ‘I was told she wouldn’t live longer than a year.’
Doctors decided that Maureen should move to a care home, but the NHS would pay for only the first six weeks. ‘And they wouldn’t let me choose which one,’ says Jim. ‘The one they picked was 20 miles from home. Several were much closer, but I was told if I didn’t accept the recommendation, they wouldn’t pay a penny.’
Jim decided to use the couple’s savings to pay for Maureen to live in a care facility closer to home. He also wrote to the council, local hospital and GP, asking for CHC funding.
Maureen subsequently underwent two CHC assessments, in which a nurse and a social worker judged her needs. On both occasions she was denied the funding. Since September 2021, Jim has spent £140,000 on care fees – almost the entirety of the couple’s savings. ‘I’ll be cleared out by September,’ he says.
The local authority will only fund care if the patient has assets worth less than £23,250. Those assets can include their savings, stocks and shares and the value of the property they own.
Jim says: ‘The NHS is denying care to those who desperately need it. We’re lucky because we had some cash. What about the thousands who don’t?’
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