ITV News has been investigating the treatment of people with learning disabilities<\/a> in private care homes, NHS hospitals and the courts. <\/p>\nBaroness Casey invited ITV News along to the hearings she is holding with members of the public, the first time cameras have been allowed in to film the work of The Casey Commission, which will be central to the creation of a new National Care Service. <\/p>\n
At the charity Mencap\u2019s offices in Central London, she heard from people with learning disabilities and their families about their experiences of the care system, as part of \u201cThe Big Conversation on Social Care\u201d initiative. <\/p>\n
Rahima Begum said people with learning disabilities are often ‘not treated as a person but as a thing’. Credit: ITV News<\/p>\n
Casey also confirmed that she will deliver her final recommendations on how social care should be run and funded earlier than previously promised.<\/p>\n
Previously, Keir Starmer had said the report wouldn\u2019t be delivered until 2028, but she will now deliver it by the summer of 2027 after the new Prime Minister Andy Burnham called for a speeding up of the process. <\/p>\n
\u201cI happen to have known Andy Burnham for quite a long time before he was Mayor of Manchester,\u201d Casey said, when asked what impact Burnham coming into office had had on her work. <\/p>\n
\u201cSo for me, it’s a great gift that he wants to prioritise social care. It’s a huge, fantastic injection of support, direction, and I’m delighted. <\/p>\n
\u201cHe set out then how he wanted to move faster and I’m absolutely delighted about that,” she added. \u201cWe need to get on with it.”<\/p>\n
Casey refused to be drawn on how she thinks the system would be funded, but told ITV News that politicians need to be \u201ccompletely upfront\u201d with the public about how much social care costs. <\/p>\n
\u201cI think complete and direct honesty with the public is the best way of dealing with this, which hasn’t happened in the past,\u201d she said. \u201cNobody’s been completely upfront about it… <\/p>\n
“We’re already spending billions on it. So my starting point is: before I ask politicians to ask the British public, it’s time to raise more money, we need to look at the money we’re already putting in. And why would we put more money into a failed system?<\/p>\n
“If there’s a private provider that’s taking 12 or 15% profit out of running care services for people, is that a good use of how we would plan for the next decade, when actually lots of FTSE 100 companies are very happy to take 5% profit? So these are the things we need to look at, not just how do you persuade the public to spend more money.”<\/p>\n
ITV News has exposed the shocking way some people with learning disabilities are treated in NHS hospitals, and allegations of abuse and neglect at some of the country\u2019s biggest private care providers. <\/p>\n
We asked Casey how she would describe the state of the adult social care system today. <\/p>\n
She said people with learning disabilities have been \u201ccompletely forgotten\u201d in Britain\u2019s adult social care system, and that society has been too \u201cfrightened\u201d to listen to what they and their families think needs to change. <\/p>\n
\u201cI think people with learning disabilities are often completely overlooked, completely forgotten, because essentially there aren’t millions of them,\u201d she said. <\/p>\n
\u201cI think often we’re a bit frightened, actually. And I think that as a society, and we shouldn’t be, we should embrace listening to people and we should make sure that we don’t make this social care system so darn complicated that people end up lonely, they end up uncertain. <\/p>\n
\u201cTheir families are worried sick about what’s going on for their adult children in many cases,\u201d she continued. <\/p>\n
\u201cAnd I don’t think it should be too difficult to do a better job, but it appears to be. The starting point was to listen directly to people with learning disabilities and take it from there.\u201d <\/p>\n
Parents like Annabel Tall attended the panel talk to share how her experiences of navigating the system for her son. Credit: ITV News<\/p>\n
For her, the poor care provided by NHS hospitals is central to why people with learning disabilities continue to die 20 years younger than the general population. <\/p>\n
Seventy years on from its creation, she says, Britain\u2019s health service \u2013 and population – still \u201chasn\u2019t got its head around\u201d how to look after learning disabled adults. <\/p>\n
\u201cOur National Health Service and our society more generally, hasn’t got its head around that. We just don’t. We haven’t planned for it, we haven’t organised ourselves for it. It’s seen as a burden,\u201d she said. <\/p>\n
A big part of the problem, she said, is that people with learning disabilities are not \u201cseen\u201d or \u201cheard\u201d by medical professionals. <\/p>\n
\u201cPeople with learning disabilities, they are often voiceless,\u201d she concluded. <\/p>\n
Casey also hit out at the existing frameworks in place to help learning disabled people and their families navigate the complicated social care system, telling ITV News that the government needs to improve the legislation that regulates the sector. <\/p>\n
\u201cWhat you have is families that we’ve just listened to this afternoon, who are pillar to post, pillar to post, pillar to post. They don’t know what they can expect, they don’t know what is certain,\u201d she said. <\/p>\n
Subscribe for free to our weekly newsletter<\/a> for exclusive and original coverage from ITV News. Direct to your inbox every Friday morning. <\/p>\nIn June, the Care Quality Commission \u2013 the body which regulates health and social care in England \u2013 admitted they are not inspecting enough providers of learning disability care, following an ITV News investigation. <\/p>\n
\u201cI think you know probably more than I do about this amount of time it takes between visits, between regulations and inspections,\u201d she said.<\/p>\n
\u201cI think that we default into \u2018this will all be sorted out by the regulator\u2019. It’s a great government technique. You outsource your responsibility, you outsource your accountability. You say it’s not for us, it’s the regulator. <\/p>\n
\u201cI think when you’re dealing with actually quite small numbers of the population who are learning disabled, you can’t outsource your responsibility for vulnerable people who you\u2019re letting other people look after, and not their family, and that we have a greater responsibility to those people than we would to others.\u201d <\/p>\n
A Department of Health and Social Care spokesperson said: \u201cEveryone with a learning disability deserves safe, compassionate care and the right support to lead a fulfilling life.<\/p>\n
\u201cThe stark health inequalities faced by people with a learning disability, including poorer health outcomes and lower life expectancy, are unacceptable and we know there is a lot more to do.<\/p>\n
\u201cThis government is rolling out mandatory training on learning disability and autism for health and care staff, ensuring staff have the right knowledge and skill to provide safe and informed care. <\/p>\n
\u201cWe are also firmly committed to creating a National Care Service and Baroness Casey\u2019s Independent Commission will set out next steps to build a system that is sustainable, joined-up and works better for those who rely on it.\u201d<\/p>\n
An NHS England spokesperson said: \u201cThe NHS remains committed to improving care for people with a learning disability with thousands receiving a health action plan each month, and specialist learning disability nurses now working in general acute hospitals to support their specific needs while they are receiving support for a physical health issue.<\/p>\n
\u201cPeople with a learning disability are also eligible for an annual health check to ensure their physical health needs are met, while their medical records now include an adjustment flag to ensure staff in all healthcare settings can identify their specific needs easily.<\/p>\n
\u201cWe welcome Baroness Casey\u2019s comments in highlighting the care of people with a learning disability in NHS services and look forward to working with her and Government when her recommendations are published.\u201d<\/p>\n
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