
'We wish we'd never asked for help': Family's hurt as thousands with learning disabilities locked up
Everyday for an hour he's allowed to leave the hospital in Hull, where he's locked away, and ride around the nearby park with his dad, who struggles to keep up.
It's the highlight of each day for him.
Josh is 21 and has severe learning disabilities and autism.
For the past four years he's been locked away in secure units. Josh's needs became more complex when he was 17.
Desperate for help, his parents, Garry and Sara, turned to social services.
He was admitted to an inpatient unit and his parents were told it would just be for three months while he was assessed. But he never came home.
"It's the biggest regret of our lives," Garry and Sara said.
"We wish we'd never asked for help.
"He was taken from us and locked up." Josh was detained under the Mental Health Act and moved to a different hospital 100 miles from their home.
According to his parents, he suffered physical and mental abuse at the hospital which was eventually closed down. "He's gone through absolute hell," Sara said.
"I don't think anybody will ever realise unless they've actually seen it.
"For one person to go through that much trauma in his life; it's so sad."
When ITV News first met Josh nearly two years ago, he was at a hospital closer to home.
Staff declared he was ready to be discharged but there was no adequate community care in place and Josh became trapped in the system.
His parents told ITV News that Josh had deteriorated significantly since.
He had been repeatedly physically restrained and injected with drugs to sedate him."Sometimes I'd go in and he was laid in his own urine because he just couldn't be bothered to get up," his mother Sara told ITV News.
"I've had to hold him while changing his sheets because he couldn't stand up.
"He was slurring his words, it was absolutely heartbreaking.
"No mother wants to walk out, leaving her child like that but you have no choice."
His father, Garry, said doctors at the facility had told him that Josh was "over medicated" most of the time."In the first meeting that we had, we were told that it was well over the limits of roughly around 80 per cent over drugged, over medicated," he said. Josh has continued to be in long term segregation and spent almost two months isolated in a room with nothing but a toilet in the corner.
Any communication was through a small hatch in the door.
That's where he spent his 21st birthday, with his parents forced to pass presents through that hatch.
Last year, Josh's parents were told he would be moved to a forensic unit which houses people involved with the criminal justice system. "I was just ready to give up," Sara said.
"I was so close to just having a breakdown and saying, 'I don't feel like I can be a mum right now' because I was just in such a bad place but then who would fight for Josh?" Garry and Sara were told it was the only option.
But it wasn't. Melissa, an occupational therapist and specialist practitioner from HOPES, arrived.
HOPES is a NHS programme which has been running for three years to support people like Josh come out of long term segregation.
Staff are trained to work intensely with the patient and family.
The model focuses on compassion and dignity and avoids using any kind of restraint, except as a last resort for a short amount of time. Exclusive analysis by Mencap for ITV News has revealed people with learning disabilities and autism locked up in mental health units are disproportionally restrained.
They make up about 16 per cent of patients in mental health units, but receive more than a third of the total restraints used. Melissa worked intensively with Josh helping him to come off his medication. "I remember when Josh first came to the hospital and, obviously, he was on so many drugs they had to wean him off slowly and he did have some ups and downs while coming off them and it resulted in Josh needed to go in seclusion," Sara said.
"Melissa sat on the floor with him at the other side of the hatch and she was holding his hand and Josh said to her, 'why can't I come out?'" About 70 per cent of people who have been supported by HOPES have come out of long term segregation.
But funding for the HOPES programme was only ever allocated for three years.
Now, it's up to local trusts to decide if they can afford the programme and the services of practioners like Melissa . Funding for Melissa to continue working with Josh stopped a few weeks ago. Josh's parents say he's struggling without her help. "It's cruel," Sara said.
"For Josh, she was here and then gone.
"She was amazing and helped him so much; we're terrified he'll regress and never come out."
Former Care Minister Norman Lamb, who chaired the HOPES project, told ITV News priority needed to be given to people like Josh. "It is an enduring scandal to continue with the practice of long term segregation," he said.
"It's a truly inhuman treatment and it's usually because of a lack of understanding.
"The NHS has a moral obligation to maintain this programme; it's clearly working." Josh's case is not rare.
Hundreds of others like him are trapped in hospital, detained under the Mental Health Act and unable to leave because there is nowhere for them to go.
ITV News has been investigating the continuing scandal of people with learning difficulties being locked away in segregated hospital units. Currently, more than 200,000 people with learning disabilities and autism are detained in inpatient units in England.
NHS figures show 40 per cent of those people do not need to be there.
Since 2011 successive governments have pledged to reduce the numbers of people with learning disabilities and autism in hospital by 50 per cent.
That target has never been met.
Exclusive analysis by Mencap for ITV News revealed it would take eight years to achieve.
In April, the government introduced a new, much lower target – a 10 per cent in year reduction by March 2026. Garry and Sara have a very clear message for the Health Secretary Wes Streeting.
"I would ask him why they're locking away people who have got learning disabilities?"
"Would they lock a five year old child away? Because that's what Josh is mentally.
"If it was his family, if it was their child, would they be happy with him being locked up?" ITV News put that question to the Health Secretary.
Wes Streeting MP admitted the treatment for people like Josh was unwarranted and cruel.
"In our ten year plan, the emphasis shifts from hospital to community," he said.
"So those adults who are hospitalised for no reason, care could be provided within the safety and dignity of their homes.
"I want that for everyone, particularly this group in society who have poor health outcomes.
"I take the challenge from the family on the chin. If this was my mum, dad, brother would I tolerate it? No.
"I'm here as Health Secretary to be a voice and a champion for patients and care users, so when parents put those challenges to me I'll able to take those challenges on."
Mr Streeting insisted the Mental Health Act Bill would stop people with learning disabilities and autism being inappropriately detained.
But Dan Scorer, Mencap's Head of Policy, said it was not so simple. "The Government has said clearly that this change in the law will only get 'switched on' when there is sufficient community support in place," Mr Scorer said.
"However, there is no plan for making sure sufficient community support will be in place any time soon.
"This is a serious flaw. There is a serious risk that the key law change for people with a learning disability and or autistic people will never be activated." Garry and Sara said Josh was excited about a future outside of hospital."He wants a job, he wants to work with bikes, he wants to go to college to learn to read and write," Sara said.
"He wants a life that's not locked away in a hospital.
"Surely he deserves that?"
Josh asks his parents daily when he can come out but they can't give him an answer.
Until there is proper community support in place Josh continues to be locked up."It's easy to lock people like Josh away and just forget about them rather than get them out there," Sara said.
"It's an easy life to lock them away, drug them, keep that one quiet.
"It's only when they've got someone who will actually speak up for them and say, no, this isn't right.
"Obviously, we are there for Josh all the time, so we know what's going on.
"But not every patient in them hospitals has someone to look out for them. So then people that are just stuck there and being drugged and nobody's seen it.

Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles


Daily Mail
an hour ago
- Daily Mail
Investigation launched into SNP ministers over huge eye operation delays as thousands of Scots are forced to go private
An investigation has been launched into long waiting times for cataract surgery in light of MailOnline's revelations that thousands of hard-pressed Scots are having to go private. The Scottish Liberal Democrats are heaping pressure on SNP ministers after it was revealed 8,500 Scots were forced to raid their savings to pay for basic care last year – more than double those who went private in 2019. Nearly 19,000 people are stuck on NHS waiting lists for the eye op across Scotland – with one patient in NHS Grampian waiting for more than three years. Party leader Alex Cole-Hamilton has now filed more than 20 written questions to the Scottish Government to uncover the reasons behind such long delays. He said: 'I'm pleased to see MailOnline drawing attention to this important issue and piling the pressure on the Scottish Government. Patients having to go private or facing waits of up to three years to be able to see again is simply not on. 'Ministers need to ensure that cataract surgery waits come down and people can get the care they need swiftly. I want these patients to know that I am on their side. These questions are part of an effort to get to the bottom of what is holding back patients from getting the care they need.' Mr Cole-Hamilton has asked about staffing levels, the reasons for waiting times, and what contact Health Secretary Neil Gray has had with NHS boards over the delays. Earlier this month, the party revealed figures showing the true scale of cataract surgery waiting times with NHS Grampian admitted that one person had been on their treatment list for 1,253 days. Delays recorded at other health boards include 869 days in NHS Shetland, 824 days in NHS Greater Glasgow and Clyde, 680 days in NHS Ayrshire and Arran, 644 days in NHS Borders, 548 days in NHS Fife, 532 days in NHS Lanarkshire and 508 days in NHS Highland. In total 18,956 Scots are on a cataract surgery waiting list, with the longest list in NHS Ayrshire and Arran, where 3,207 people have been referred. NHS Fife is second, with 2,440 patients waiting for the surgery. MailOnline's own investigation found 8,500 Scots paid for cataract ops out of their own pocket in 2024, more than double the 4,075 people forced to go private for the surgery in 2019. Grandfather David Samson from Tayport in Fife has been waiting more than 19 months for a cataract operation on his right eye. The 87-year-old was first diagnosed in January 2024 and was originally told he would be treated within 18 weeks. That then became 18 months – and later almost two years. Mr Samson, a former kitchen designer and builder, hopes to finally be seen at Dundee's Ninewells Hospital in October. He said: 'It's not affecting my driving yet but I am anxious about it. My condition is slowly getting worse.' Mr Samson has a relative in England with the same condition who expects to be treated in 16 weeks. He added: 'I am 87. When I'm in my box I want to see where I'm going.' A spokeswoman for NHS Tayside said it hopes to cut surgery waiting lists to 52 weeks by the end of the financial year. Mr Cole-Hamilton added: 'Our NHS is being held back by neglect and mismanagement from SNP ministers. 'The SNP has repeatedly demonstrated that the NHS will never be its priority.' A Scottish Government spokesman said: 'This year, we are investing a record £21.7 billion in health and social care including £106 million to help health boards tackle the longest waits and deliver over 300,000 additional appointments. 'The Scottish Government is clear that no one should face a lengthy wait for important surgery and procedures.'


The Sun
an hour ago
- The Sun
Hero doctor crosses picket to treat 6 patients after striking union blocks cancer tests
THE militant BMA union refused a hospital's plea to allow a doctor to carry out potentially life saving cancer tests. But a hero doctor caught wind and crossed the picket line to help six men waiting for prostate biopsies. 6 6 6 Health Secretary Wes Streeting blasted the British Medical Association and praised the 'brave' doctor who broke ranks. Milton Keynes University Hospital trust was due to perform biopsies on the six men on Friday. But they faced cancellations after thousands of junior doctors, now called residents, walked out that morning in the long-running row over pay. The trust made a special patient safety request - a derogation - which allows striking doctors return to work if there is a risk to patient safety. The Sun on Sunday understands they were worried about the anxiety and mental health impact on the men who could face significant delays in finding out if they have cancer. Prostate cancer biopsies are also invasive and uncomfortable procedures. The request was signed off by NHS England but the BMA refused to bring anyone in because the request was based on anxiety rather than on clinical concerns, sources claimed. Fortunately, a resident doctor on the picket heard about the row and broke ranks to care for the men. And all six men had their biopsies that day as planned. Mr Streeting - who previously had kidney cancer - said it was 'completely unacceptable' for the BMA to dismiss the impact of a delayed diagnosis. He said: 'As someone who has been through it, I know all too well what a worrying time it can be while you are waiting to see if you will be diagnosed with cancer. 'Not knowing can be one of the most difficult periods. 'Patients concerned about whether they have cancer and their loved ones want the NHS to provide a diagnosis as quickly as possible. 'It is completely unacceptable for the BMA to dismiss the mental anguish a delayed diagnosis can have on people and families. 'I want to thank the brave resident doctor who broke the strike to ensure these men got the care they deserve.' Dr Victoria Alner, acting Chief Medical Officer at the trust, said: 'Thanks to our staff whose ongoing professionalism and support have enabled us to keep clinics running during the industrial action. 'Our priority is always to provide safe care, and we will continue to do our utmost to minimise disruption for patients.' This time round the NHS is trying to keep as many services as possible running. And the public is being urged to still come forward for care during the walkout. Mr Streeting said the government would "not let the BMA hold the country to ransom". NHS England said hospitals are aiming to reschedule appointments cancelled due to strikes within two weeks. But Professor Meghana Pandit, NHS England's co-national medical director, warned this could have a knock-on impact for other patients. 'Even two weeks is too long for somebody to wait and actually that has an impact on the people who are then displaced at that two week period," she told BBC Breakfast. She apologised to patients facing delays, adding: 'I know that is extremely distressing when that happens, and it can potentially lead to both physical and psychological harm. So I am sorry.' Prof Pandit said three derogations were granted on Friday. Nottingham City Hospital reached an agreement to call a striking doc back from the picket line because babies' lives were at risk. Exemptions were agreed for two doctors to return to the Northern General Hospital. Another agreement was made for two anaesthetists to work at University Hospital Lewisham on Saturday. And one registrar radiologist to cover the acute service at King's College Hospital. The number of resident doctors who have joined picket lines is thought to be down by thousands compared to last year's strikes. Labour handed them the biggest pay award of any public sector service with an average increase of 28.9 per cent over three years. But public support has fallen for the latest round strikes. Despite this, resident doctors are demanding a further 29 per cent rise. A BMA spokesperson said: "This service was not suitable for a derogation as the BMA assessed there was no urgent clinical need. "NHS England was repeatedly warned that encouraging non-urgent elective care would lead to last-minute cancellations - with patients bearing the brunt. "Despite this, they chose to press ahead. We remain focused on ensuring a safe service continues." 6 6 6


Telegraph
2 hours ago
- Telegraph
Leading figures back Telegraph's campaign for prostate cancer screening
Leading figures have thrown their weight behind the Telegraph's campaign for targeted screening for prostate cancer. Men are not offered tests even if they have a family history of the disease, but the UK National Screening Committee is considering whether to recommend the rollout of testing. Launching the campaign, The Telegraph revealed thousands of men are only receiving a diagnosis with prostate cancer after being dismissed by their GP multiple times. Every year about 55,000 men are diagnosed with prostate cancer, the most common cancer in men. Of those, around 10,000 only receive the diagnosis after at least three visits to their GP seeking help, NHS data suggests. Rishi Sunak, the former prime minister, on Saturday backed the call for targeted screening, joining several figures from the world of television and sport who have been treated. Experts believe there is a growing case for targeted screening, meaning that prostate-specific antigen (PSA) tests would be offered to those at heightened risk. The plight of men with prostate cancer has been highlighted by Sir Chris Hoy, a six-time Olympic cycling gold medallist, who was diagnosed with terminal cancer that originated in his prostate in 2023. Despite prostate cancer affecting his father and grandfather he was never offered PSA tests. Targeted screening could mean offering checks to men with a family history of the disease, higher genetic risks or those whose ethnic background increases the chance of disease. Men over the age of 50 can request a PSA test but GPs are told not to offer them proactively, and to use their clinical judgment about younger men. Under the current rules, those with symptoms should be offered tests. Wes Streeting, Health Secretary, has said that Sir Chris 'makes a powerful argument' about the case for prostate screening, especially where there is a family history of disease. Every year in the UK around 12,000 men die from it with around half of men only diagnosed when the disease, which can be symptomless, is at a late stage. Mr Sunak, who recently became an ambassador for the charity Prostate Cancer Research, said: 'Too many men are leaving it too late to get checked. They get lulled into a false sense of security by the absence of symptoms. 'In too many cases, by the time there are symptoms that are impacting your lifestyle, it's probably too late. By the time men do seek help, the cancer can be advanced and much harder to treat. 'In some cases people don't realise they are in high-risk groups because of family history or ethnic background. Ignorance kills and that's why we need a targeted national screening programme. It will ensure men are seen and checked before it's too late.' Government advisers have previously been reluctant to recommend the programme because of concerns about PSA tests. However, in recent years the back-up diagnostics used to make a diagnosis have significantly improved. Actor Stephen Fry, 67, was diagnosed in 2018 and underwent surgery to remove his prostate and some lymph nodes. He was diagnosed after a routine PSA blood test and MRI scan following a suggestion from his doctor. He too backed the Telegraph campaign, saying: 'Prostate cancer is the most commonly diagnosed cancer in men in the UK yet it remains one we speak about too little, test for too late and act on too slowly. Thousands of men are dying needlessly from a disease which, when caught early, is eminently survivable. The status quo must change and it must change now.' He urged the Government and the National Screening Committee to introduce a targeted screening programme, beginning with the men most at risk. Fry said: 'We know early detection of prostate cancer saves lives. It really is that simple. No man should die from a cancer that could have been treated if found in time. We have a moral obligation – as a society and as a health system – to act. The opportunity is before us; the cost of inaction is measured not just in numbers but in fathers, brothers, partners and friends lost and families left shattered.' Dermot Murnaghan, 67, the former Sky News presenter, revealed in June that he has Stage 4 prostate cancer, meaning it has spread to other areas of the body. He said he 'fell through the gaps' in the system, never asking his GP for tests because he assumed that regular private health checks included PSA tests. He told The Telegraph: 'I know first hand the difference early diagnosis can make. We now have the tools to target those most at risk and save thousands of lives each year. It's time we rolled out screening for high-risk groups.' TV presenter Nick Owen, 77, was diagnosed with aggressive prostate cancer in 2023, for which he received treatment. He said: 'Being diagnosed was one of the worst days of my life. It triggered some turbulent times, not just for me but my family too. Life is better now but it's not the same as it was. The groundswell for change in how this awful disease is diagnosed and treated is growing. 'Prostate cancer is the most common cancer in the UK without a screening programme, but the evidence is there to change this. 'Early diagnosis is key and changing that senseless situation where its still incumbent on men to be aware of their risk and proactively talk about it with their GP. Black men and those with a family history are at increased risk, so its so important that they are armed with the full facts. 'I am a dad to three boys all in their late 30s and early 40s. I know about inherited risk. I am really concerned about them. I am very anxious about it. 'We all want a world when there are regular, reliable tests to find prostate cancer in its early stages, when it's easier to treat. Hopefully this campaign can set us on the right path to get there.' Kenny Logan, 53, the former Scotland international and husband of BBC presenter Gabby, underwent treatment for prostate cancer earlier in 2022. He said: 'I was asymptomatic when I was diagnosed in 2022, if I hadn't taken a blood test it might have been too late. I'm grateful to be here, this is why I'm backing The Telegraph's campaign urging the Government to act with urgency.' Bill Turnbull, a TV presenter and journalist, died of the disease in 2022 aged 66. His daughter Flora said: 'A targeted screening programme for men who are most vulnerable of developing prostate cancer will be a step in the right direction. Those at highest risk of this disease deserve better. 'My family and I know how cruel prostate cancer is after watching my dad gradually decline after his diagnosis in 2017. 'I know how decisively and swiftly the illness can act if left unchecked. I really hope this campaign results in better outcomes and a better future for all men and those who love them.' Nick Jones, 61, the founder of Soho House, an international chain of private members' clubs, was diagnosed with a large and aggressive tumour on his prostate which was urgently removed. He said: 'I consider myself one of the lucky ones, my prostate cancer was caught just in time. But luck shouldn't decide who lives and who dies. It's time for the Government to act. Too many lives are on the line.' Journalist Paul Henderson was diagnosed with stage two prostate cancer in June and will be writing a regular column for The Telegraph about going through the process of diagnosis and treatment. He said: 'Prostate cancer awareness shouldn't start with a diagnosis. As the most common cancer in the UK, we all need to be talking about it. We need to understand the risk factors and we need to catch it as early as possible. 'Like almost all men, I never thought it would happen to me. But in all honesty, I never really thought about prostate cancer, full stop. That has to change. And bringing in a national screening programme shouldn't really be a discussion because it's simply a matter of life or death.'