Why are care homes refusing to tell relatives how loved ones died? MP says NHS may be breaking law

The daughter who can’t figure out when her mother was diagnosed with dementia. The grieving husband desperately wants to know how his wife died, but can’t read her hospital notes. The son who may be forced to sue his late mother’s hospice – because they refuse to hand over her medical records.

These are just some of the heartbreaking stories of people who have been denied vital information about their deceased relatives.

Last week, Dr. Ellie Cannon, GP of The Mail on Sunday, told readers if they had no access to the documents of deceased loved ones. We received a flood of emails claiming that GP surgeries, hospitals, care homes and hospices are refusing to hand over important data.

In many cases, families request the files when they believe their deceased relative has been abandoned by their healthcare provider — and bureaucrats’ unwillingness to share them heightens suspicions that there is something to hide.

“It is worrying to hear that families are struggling to access medical documents they are entitled to,” said MP Dr Caroline Johnson, a member of the Health and Social Care Select Committee. “An NHS service refusing to hand over this data may be breaking the law and there is no excuse.”

Family members do not automatically have the right to inspect the medical file of a deceased loved one. Confidential documents remain confidential even after death, but there are specific reasons why a family member is allowed to see these notes.

If a person is named in a will as an executor — making them legally responsible for carrying out the patient’s instructions, such as handling money, property, and possessions — it also means they have access to medical records. The law also allows access to those who need the information for legal purposes, for example if they are suing the NHS for malpractice.

But even in these circumstances, requests are being blocked by healthcare providers, who falsely claim it is for privacy reasons.

A woman from London told the MoS how care home staff refused to share her mother’s medical records despite providing the necessary legal paperwork.

“My mother had received poor care in a previous home, so I wanted to make sure she was treated well in her final days,” says Patricia Myers, 74, who was the executor of her mother’s will. “It feels like care homes are interpreting the law because they want to make their lives easier.

“I know many people who have been in the same situation. Grieving people can’t figure out what caused their loved one’s death.’

In several cases, this newspaper heard of families involved in lawsuits to access these vital documents, which are often lengthy and prohibitively expensive.

Anthony, 47, from Maidenhead, has been fighting for three years to get his mother’s medical records. His mother, Katie, a retired librarian, died in the summer of 2020 at age 76 after a sudden cancer diagnosis.

She spent her final months in hospice, but Anthony claims the family was not told how quickly she deteriorated. “The day before my mother died, we were looking for a nursing home to put her in because the hospice had said there was no room for her there,” says Anthony. ‘But the doctors were sure she didn’t have long, right? I just want clarity on what they knew.’

Despite being named as Katie’s executor, hospice Anthony refused to give her medical records.

He complained to the Health Ombudsman, but the agency said it had no powers to enforce the handover of documents and he would have to go to court to request her records. “I’m not sure I can afford a lawyer,” he says. “I just want to know what happened to my mother. Why is that so difficult?’

However, it also appears that many people do not know what access rights they have to the medical records of loved ones. A number of readers wrote in to say they hadn’t realized they weren’t legally allowed to see the notes of their deceased relatives.

James Cole, 73, from Bradford, never expected to be denied access to his wife’s records after her death. Evelyne, 71, died in 2021 after contracting Covid in hospital.

According to James, a retired environmental health officer, his wife was released from hospital while still infected – even though she suffered from conditions that left her clinically vulnerable to Covid’s severe illness. A week later, she collapsed at home and was taken back to the hospital where she died.

“We wanted to go through the medical records to understand why they sent her home with Covid when she had several serious health issues,” he says.

But the hospital refused to allow James access to the notes because Evelyne had no will, so there was no named executor. In the absence of a will, even a spouse does not automatically receive this status.

James says, “My wife didn’t have a will because she had nothing to leave. Our house was jointly owned, so it didn’t happen.

“I understand the need for confidentiality, but I think this is a gray area – I should have the right to see her records.”

Experts argue that the rules are there because it is vital that information is properly guarded.

‘Doctors have a duty to protect the privacy of their patients, even after they have passed away,’ says Dr Dean Eggitt, a GP from Doncaster. “There are plenty of things someone could tell their doctor in confidence that they might not want their family to find out about. So there must be a clear legal reason to view this data.’

Experts say all adults should write a will and appoint an executor — otherwise known as a personal representative — even if they’re healthy.

“Not enough people have written wills when they die, and it’s often because they don’t realize it’s not just about passing on money,” says Stephen Clarkson, an associate solicitor at law firm Leigh Day.

“If you’re not named as an executor or personal representative in your loved one’s will, it’s a very complicated process to rectify this after they pass away.”

Chris Rodwell, 79, from Surrey, was shocked when the hospital where her mother died refused to tell her whether or not she had dementia. The former flight attendant says her mother died of cancer more than a decade ago, but the family suspected she also suffered from dementia due to her confusion and forgetfulness.

“My husband and I wanted to know if she had been diagnosed with dementia in the weeks leading up to her death, so I called a few years ago to ask.

“I was totally surprised when I was told that this information was private. I was her only daughter and I was taking care of her, so I felt I had to know.”

Experts say the best course of action is often to contact a lawyer, who can write a letter to the healthcare provider requesting the documents for legal reasons.

“If a request for medical records includes the name of a lawyer, the hospital tends to comply,” says Mr Clarkson.

“We can then go through the files with the family member and decide if there’s anything going on that could warrant a lawsuit.”

Some names have been changed in this article.