Ravi Mehta allowed home after 13 months but denied personal health budget

Ravi Mehta, a 37-year-old with Duchenne muscular dystrophy, has spent more than 13 months in London's Royal Brompton Hospital after what was meant to be a three-day checkup on his ventilator. There is no medical reason for him to remain in hospital, but a dispute with his local NHS integrated care board, the ICB, has left him there at a cost of tens of thousands of pounds.

Before the hospital stay, Mr Mehta lived at home and received a personal health budget from the ICB. The budget allowed him to hire his own carers and have control over his daily care. He was able to go out with friends, volunteer and have a life. Shortly into his hospital stay, the ICB removed the budget and told him and his family that he would need to go into a care home.

Mr Mehta said the prospect of a care home would be devastating. 'Over each day that goes by, I'm just losing each part of myself. I just want to go home, that's my only mission,' he said. He added: 'if I go to a care home, I really feel that's literally the end of my life.' His mother, Neeta, showed the equipment at home waiting for him, including a hoist, and described losing precious time with him. She said his condition has a short life and that he is well past his life expectancy.

Because Mr Mehta is eligible for NHS continuing healthcare, he has a legal right to a personal health budget. He appealed against the ICB's decision. Last week the ICB said he could leave hospital and go home, but it said he cannot have his own personal health budget and cannot choose who will care for him. The ICB also said another environmental report is needed, although the family has not been told what it is looking for.

The family tried to show a video of the house to the appeal panel, but it was refused. A previous environmental report on the home was riddled with errors. It said there were no radiators, although two were visible, and that the main heating source was Calagas, which the family says is not true.

In the House of Lords last week, Baroness Jane Campbell became the first peer to use AI-generated voice technology. Her speech focused on the importance of personal health budgets for disabled people. 'Choice must be safeguarded through stronger guidance, including a right to portability and flexibility. ICBs must not use residential care or budget withdrawal to coerce individuals,' she said. She also warned that the medical model must not swallow decades of progress on disability rights and independent living.

Concerns have also been raised that cash-strapped ICBs are ignoring the government's wish for more, not fewer, people to have these budgets and that rights are being eroded. Disability rights advocates argue that people with health needs are still entitled to live ordinary lives and that choice and control are morally right and good for society.

The South East London ICB said it is committed to supporting Mr Mehta's choices and preferences. It said that, as with any discharge planning process, the NHS has a responsibility to ensure proposed care arrangements are safe, appropriate and capable of meeting an individual's assessed needs. It said an updated environmental assessment is being arranged.

For now, Mr Mehta remains in hospital. He said every day is becoming more difficult and that on many days he has let the time go past doing nothing. His mother continues to wait for him at home.